H. Ben's Blog

"Sticky" Schedule

2009-01-01T08:25:00.003-06:00

Last Updated: 17 April 2008, 11:10PM

~~~~~~~~~~~~~~~~~~~~~~~~~~~
Since I find that this blog is being visited by the public-at-large, allow me to explain just a bit. I'm a 56-year-old esophageal cancer sufferer. I have been diagnosed as having “Invasive adenocarcinoma of the esophagus with metastasis to stomach and lymph nodes.” I've had 5 rounds of chemotherapy and have started radiation therapy.

This blog was started to keep friends and family updated as to what is going on in my life, how I feel, when my treatments are, etc.

It is also a diary, where I try to get rid of my frustrations by pouring my heart out into these "pages." So, if you choose to read a little, be prepared for some "belly-aching." Now, how's that for a pun? Especially since I have a tumor in my stomach?

If you got here from a link on Sunni Maravillosa's web site, you won't find a scholarly discourse on Liberty and Freedom. However, since I do believe in Liberty and Freedom, my beliefs do come out in my posts, as evidenced by the link at the bottom of this post. As I said, this is primarily a diary of my life. But feel free to stick aound and browse to your heart's content, if you have the time.

This schedule will remain at the top of my blog until further notice. Any NEW POSTS will appear directly below this one. Claro?

~~~~~~~~
Notes
~~~~~~~~
My Short Term Disability paperwork came back stating that they don't want me working at all. So I won't be working until after the surgery.

~~~~~~~~~
SCHEDULE
~~~~~~~~~
3/21/08 - 07:15AM I'm hoping that I go in for my last PET Scan today.

3/24/08 - 02:20PM Lab blood tests.

3/24/08 - 03:00PM Consult with Dr. Himmy about lab results and PET Scan results. I should find out what is in my future at the same time.

Since I'm not working, I deleted my work schedule for now.

~~~~~~~~~~~~~~~~~~~~~~~
MEDS
~~~~~~~~~~~~~~~~~~~~~~~
Pain Meds Schedule:

Packer Candy – PC; Time Released – TR; Short Term - ST
Naproxen Sodium - NS

02 AM: PC-ST 5 mg.
06 AM: PC-ST 5 mg.
08 AM: NS 220 mg.
10 AM: PC-TR 20 mg, PC-ST 5 mg.
02 PM: PC-ST 5 mg.
06 PM: PC-ST 5 mg.
08 PM: NS 220 mg.
10 PM: PC-TR 20 mg, PC-ST 5 mg.None.

Blood Pressure:

Anti-Cancer:

Round 1

Round 2

Anti-Nausea:

Aprepitant, anti-nausea.
Aloxi, anti-emetic, IV use only!

Others, or as Needed:

Protonix, proton-pump inhibitor.
Dexamethasone, steroid to reduce fluid retention.
Lomotil (Lonox), anti-diarrhea.
Mannitol, diuretic/laxative?
Neulasta, Granulocyte colony-stimulating factor
Lovenox, anticoagulant.
Warfarin, anticoagulant.
Mobic, non-steroidal anti-inflammatory.

~~~~~~~~~
Need more info here, let me know, OK?
~~~~~~~~~

DPC - De Pere Clinic
VLCC - Vince Lombardi Cancer Center.
ABCMC - Aurora BayCare Medical Center
EGD - EsophagoGastroDuodenoscopy

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Update and Obituary

2008-05-04T13:36:00.003-05:00

Hello all,

I wanted to let everyone know that Dad's obituary ran in today's Green Bay Press Gazette. The link to the on-line obit is:
http://www.greenbaypressgazette.com/apps/pbcs.dll/article?AID=/20080504/GPG010301/805040782/1212

Ben and I and Dad's brother Bill and his wife Julie said our final goodbyes to Dad's body on Friday and watched him be loaded into the cremation retort. We included many sentimental items in the cremation, including photos of loved ones, a few knives, feathers, a choker that belonged to his best friend Rawley before his own passing, and a few other requested items. Ben and I also decided to place a lock of each of our hair into Dad's hands, so he was clutching a part of each of us as he was cremated. I think Dad would have really liked the uniqueness of this whole thing ;-). Ben and I picked up his ashes on Saturday. So his earthly vessle is now no more.

We also wanted to let everyone know that we have decided to have the memorial celebration this coming Saturday, May 10, 2008, from 3:00 pm to 10:00 pm. (People can come and leave as desired). It will be at Dad's home. Please call Dad's phone number or Blaney Funeral Home at 920-494-7447 for specifics, if you would like to attend. All family, friends and acquaintances are welcome. We will have Dad's favorite Mexican food catered, but please bring your favorite dish, if you are willing, so that we can have a variety of food to choose from. Desserts, side dishes, good ole Wisconsin comfort food, are all welcome. Also, because we aren't big drinkers and we have no idea what people's preferences are, this will be a "bring you own booze" event. It just makes life easier ;-).

That's all for now,

Amy

A memorial link.

2008-05-01T21:04:00.003-05:00

H. Ben's Danish brother-in-law posted a touching memorial on his blog this morning.

Help me feel the joy through the pain

2008-04-30T16:15:00.002-05:00

Hello all,

I want to sincerely thank everyone who has stood by my father, Ben and I through this very difficult time. You are all loved dearly by my father, and for that reason alone you are very important to me. I know one of the hardest things for Dad to handle throughout his illness was his knowledge that it was so hurting the ones who love him, to see him suffer and struggle and hurt. It truly pained him to know that his suffering was hurting us, but I hope that also means that he felt very loved, respected, and valued by so many.

Like Ben, I cannot really imagine my world without him. I am trying to keep thinking of all the good in him, all the good he instilled in me, but right now all I feel is hurt. There is a gaping hole inside of me that I'm sure will never heal. Many wise people have told me it will, but at this moment, it is so hard to believe.

Thank you all so very much for your love and support. No matter what Ben and I have been feeling in this ordeal, we have NEVER felt alone because of all of you who love my father.

Amy Malliett

So it goes.

2008-04-30T11:54:00.002-05:00

I post this message from a house filled with grieving people. My father passed at 4:43 this morning. I can see him from where I sit.

I can't conceive of a world without him, and yet, here it is, unbidden and unwanted.

Another Update

2008-04-27T20:33:00.003-05:00

Here's another update, in the spirit of keeing everyone informed as much as possible. Dad had more visitors this afternoon. His brother Bill, Bill' s wife Julie, and Dad's mother Marie all visited with Dad. While Dad was in and out of consciousness, he seemed to enjoy the company. Of course, I know it was a difficult shock for Bill, Julie, and Marie to see Dad in this condition because things are progressing much faster than anyone expected.

Of course, Dad has been joking around whenever he was awake, including "petting" Ben's cats with the grabber-claw thing he requested I get him (So that he can pick things up from afar from a laying-down position). He has also been stubborn whenever the opportunity arises. So, he's very much still himself ;-).

He has been VERY drowsy the last two days, and that seems to be getting worse. It is due to both/either 1) the pain medication he is on, and 2) the deterioration of his liver. When the liver stops functioning, it makes one's blood composition wacky, which will affect the functioning of one's brain. Dad's nurses said this may be beginning to happen. A hospice nurse will be here again tomorrow, so we may know more then.

I will briefly go back to Tampa from Tues - Wed, but I plan to turn right around and come back, given the current situation.

We will do our best to continue keeping everyone updated. If anyone wants to email me directly, my email is the same as Dad's, except that it's my name instead of his. So, that would be amy.m @ "our last name here" .com

If anyone would like my phone number, email me and I will provide it that way.

xoxox,

Amy

Home and entertaining.

2008-04-27T13:16:00.002-05:00

Dad made it back from the hospital, but he's been very tried and mostly bedridden. He has been reading, and enjoying, the comments on the blog, but has not felt up to posting thus far.

Medically, things are not going well. His abdomen is still distended from fluid build-up discharged by the liver, and he was and still may be bleeding into his stood and urine. He is, however, on a pretty potent mix of drugs, so there shouldn't be much discomfort.

I don't recall off hand if Dad ever established just who the Stevens clan was for his blog audience; in case he didn't, I'll summarize by saying that they have been dear friends of his for many years. Many members of this family have been keeping Dad company this weekend (and for months before that, truth be told), and doing a very good job of it. It's a bit strange for me to wake up to the sound of laughter coming from Dad's room, but I can't imagine a scenario that would be more pleasant for Dad. Considering that my mother and stepfather have been visiting as well, this has made the house more crowded than I've ever seen before!

New Update

2008-04-25T06:13:00.002-05:00

Hi All,

Well, as I'm sure you've imagined, Dad is still in the hospital. They MAY let him go home today, but that remains to be seen. They had to give him more blood on Tuesday, so they have transfused him twice. They are not really sure where he is bleeding.

I hate to say it, but they have said the dreaded word, "hospice." They said it is time to start discussing that, and that when they discharge him, it will most likely be with hospice services set up to come to the house once a day.

I spoke with the nurse last night, and she said Dad's Oncologist said "it looks like things are moving faster than projected," meaning faster than that 3 - 6 month time line they gave us one month ago. BUT, it may also be just a bump in the road and he may rally and improve again, so it remains to be seen.

Once again, he really appreciated your comments to the last post. I am flying to Green Bay on Saturday, and will stay through Monday evening. We'll be able to post more frequently then, cause I can type while Dad talks ;-).

xoxox,

Amy

Update on Dad's Hospital Stay

2008-04-22T14:50:00.002-05:00

Hello all,

I spoke with Dad a couple times today. He is not being discharged today, because of his severe pain issues. They want that to be under control before they let him go home. They are trying multiple tactics, and will go with what works the best.

I read the comments from Ben-my brother-'s post to Dad, and he seemed cheered by your thoughts and wishes. So, keep commenting, and Ben and/or myself will make sure Dad hears you thoughts. If you want to talk to him, you can call (920) 288-4125 and ask for room #145. That will get you his room.

I'll warn you, though.... Dad is on morphine ;-)!!! Now, for someone like Dad, who has never really done drugs, and who has never been a huge drinker, morphine is kind of a beast for him. When I spoke to him, he was grumpy about how the drugs are making him lose his train of thought, mid-sentence. I reminded him that it was normal, and that he can blame the drugs, not himself or his head, but I don't know if that helped much. He does not like being in this situation, and who can blame him.

Thanks for all your thoughts, prayers, and well-wishes.

Amy

I have some unfortunate news.

2008-04-21T06:59:00.002-05:00

I'm blogging in Dad's place today because he's been admitted to the hospital. He is doing just fine, though.

The problems he's been having came to a head last night with severe nausea and light bleeding from the nose and anus. We summoned paramedics, and not long after we learned from the ER doc that he seems to have lost some blood. Not a lot, but enough to cause problems.

His admitting physician explained that the liver plays a role in regulating the thickness of a person's blood. Since Dad has some cancer on or at least near his liver, its functionality might be impaired somewhat, causing the thickness of his blood to vary. That, combined with the blood thinners he's been taking since the episode with the clots, resulted in blood that was way too thin, which in turn facilitated the bleeding.

They are going to do a CT scan to determine if they need to do any plumbing work on his kidney, give him some blood (A- it turns out, which is apparently rare), and of course, adjust the dosage of his blood thinners.

Right now, they expect him to be out as early as tomorrow.

Jaws Clenched Tight!

2008-04-19T22:24:00.000-05:00

Do they happen to have an abbreviation for something that would mean something like “jaws clenched tight” as in trying to keep from throwing up. Or what was it Sunni called it, “blapping?”

I’ve been sick for several days. I recently doubled up on my long term and my short-term pain meds and it helps a bit better, but not enough. And the meds cause constipation, which cause a whole bunch of problems all by themselves.

So, tonight I got to experience a whole lotta jaw clenching although I had nothing in my stomach to toss.

I called the doc and he recommended Milk of Magnesia for the constipation. And I’m to double up on the long term, 40mg twice a day. And since I had already doubled the short term meds, I was to double them again up to every three hours if necessary.

I was also directed to get something else for the nausea/vomiting but before I could document this, I received a phone call that caused me to forget that part of my instructions. So, I don’t remember anything else about what I’m supposed to do.

One thing I need to tell the doc is I have a nose bleed. It’s not your normal everyday nosebleed. The left side is bleeding slowly and building up a big blood clot. I finally was able to expel a clot that was the size of my little finger up to the first joint in three easy installments! :-) But if something like that is going on in my nose, what’s going on in the rest of my body?

Hopefully I’ll remember more before Ben gets home.

Kunolunkwa, y te quiero!

Down This Road Again

2008-04-18T21:41:00.001-05:00

All in all, I’d much rather roll over and try to get back to sleep. But I had promised you a post that I will not be able to keep my promise on. Sorry! The least I could do is explain my failure.

I don’t know if you noticed, I’ve posted my pain meds schedule in the “Sticky Scheduler.” So if I mention that if I forgot to take my 8AM NS, my naproxen sodium, you’ll know where it fits into the pain med schedule.

Or if I mention that I took an extra ST-ST 5mg at 6PM, you’ll be able to figure out how it fits into the overall scheme of pain relief.

~~~~~~~~~

I’ve been sick all day. First it was one thing that eventually, if only partially, resolved itself, although I did not take my 8AM NS because I thought it might be causing stomach pain. I did take my 10AM meds normally. My first issue resolved itself somewhat between 10AM and Noon.

But, and I don’t know if they’re related, the second issue, extreme pain in the back, manifested itself and I spent all afternoon trying to resolve that issue.

I ended up taking my 8PM NS early at 6PM, but two hours early after missing it for 10 hours isn’t a problem. And I needed it; my hip joint was really starting to hurt. But I had talked to one of those 24 Hour Health Care Nurses about the first issue and her point was I shouldn’t have to suffer any pain at all.

So, hurting like I was, I took an extra PC-ST 5mg at 6PM. So that meant that I took 10mg of fast acting pain relief. And if it helped, I couldn’t tell. Maybe it helped me sleep a bit, but not so’s I could tell.

So, I have had this second issue before; I just don’t remember if I ever knew what the problem was. And, I have had more of this issue lately, just not as bad as today. I’d sure like to know what is going on.

~~~~~~~~~

On another front, my crutches are irritating my underarms. I have a “scrape” under the left arm, and a skin tag that is extremely irritated and sore under the right arm. Makes me not want to use the crutches.

~~~~~~~~~

It has taken me over an hour to put this little bit of a post together. It shouldn’t be an issue when I’m feeling well, but when I’m feeling sick, it takes me a while to think about and put the proper words together. So that’s why I didn’t attempt anything intellectual today. And I don’t know when I can expect to feel better, so I won’t even try to make that promise again.

Kunolunkwa, y te quiero!

Three More Tattoos

2008-04-17T18:42:00.000-05:00

Boy, am I adding to my list of tattoos. I believe that these are rose buds, as well, but with all the other ink on my skin I’ll have to wait until I can take a bath and clean the sites.

And I don’t know if I can post pictures of these tats as close as they are to body parts that most Americans say they have problems with. I might end up becoming a sex offender and have to get registered and put on a list. I wonder if just talking about it means that I am violating any laws. Hmmmm!

Still hurtin’, still drowsy, and they have allowed me to take my pain meds whenever I want now. For example, I went out to take care of business this AM and to pick up a few things. I got home pretty tuckered and decided to lie down and catch a few z’s. I had taken my meds at 10:00 and was waiting until 2:00 to take more. But laying there made my kidneys seem to hurt, spoiling a perfectly good nap. So, at noon, I took another pill, hoping that it would allow me to take my nap. If I could take a double dose at 2:00, why couldn’t I take one at noon and one at 2:00? Apparently, it doesn’t hurt a thing except make me drowsy.

Speaking of drowsy, it’s kinda funny. I’ll be laying here, reading an article online, with my finger poised over the mouse button, when I’ll awake with a start and notice that the sound that woke me up was the scroll bar hitting the end of its range. So, I back up and start reading the article from the last point I can remember. And yet I have trouble falling asleep.

Well, I have nothing planned for tomorrow, so there’s a couple of posts I want to get written. And since it takes me so long to do the thinking, the typing, and the proofreading that I’ll probably need all day.

So, there’s an email that I want to get done tonight, so I’m going to end this one right here. No, right here! NO, RIGHT HERE!!

Kunolunkwa, y te quiero.

And A Belated Happy Birthday…

2008-04-15T21:13:00.002-05:00

…to the last of the Aries birthdays in the family. Since it was yesterday, and I did post yesterday, I should have mentioned it. I am sorry I forgot, and offer my humblest apologies.

~~~~~~~~~

I don’t know what is going on with me. I have been having trouble sleeping despite taking plenty of Valerian Root and melatonin. I took 12 mg of melatonin last night and didn’t fall asleep until some time well after 2:00AM. Usually that would put me right out! Then I drifted in and out of slumber all through the rest of the night. I didn’t finally start to get some serious sleep until after my 10:00AM meds. I’m wondering if the pain is still an issue, or if the little caffeine contained in the green tea is causing all the problems.

I did the ‘fever with no sweats’ vs. the ‘sweats with no fever’ thing last night so I tried the Aleve (naproxen sodium) that the doctor recommended. Now, the naproxen is an NSAID so I can't say that I wasn't curious to find out what would happen. I got up this AM after taking the naproxen once, ONCE, and found that most of the pain in my hip joint WENT AWAY!!! I could walk almost normal without any aids and with very little pain. What’s up with that? The meloxicam NSAID that my PCP prescribed didn’t seem to help, much at all but plain ol’ naproxen let me have my joint back. The only issue is that I have to be very careful with my stomach and any NSAIDS.

Speaking of stomachs, I haven’t had much experience with constipation, until now. All of the recent pain meds have overpowered my gastrointestinal tract leaving me with another type of pain - constipation. The chemotherapy almost always guaranteed having diarrhea so my experience level with constipation is very low. The Dulcolax hasn’t been working so I needed to try a Fleet enema. That’s what I have been reduced to, giving myself enemas! It helped but I can tell that more attention is needed in this area. It causes problems with appetite and eating.

The fever/sweats have contributed as well. Although I try to stay hydrated, I lose a lot of moisture through the skin. That means that I don’t have it in the intestinal tract to lubricate things. I’m still not sure how I’m going to handle this on a regular basis. I have gone back to the sugar-free Benefiber chewables. That should help a bit. But as I said, I’m not sure what I need to do.

So, I have to get prepared for a Social Security interview tomorrow so I’m going to cut this short tonight.

Kunolunkwa, y te quiero!

Back To Work

2008-04-14T21:56:00.002-05:00

No, not me! Ben!

I like spending time with my son—with ALL my kids really—seeing as how I only have two that are really, truly mine. But Amy isn’t here right now. So, if I don’t get too much posted on the weekends, I hope that you’ll understand.

Now there are other things that I’d rather be doing with Ben—snorkeling comes to mind—but if watching TV shows like we did in the old days are all I can manage right now, then that’s what I’ll do. Now, I also don’t want to monopolize his usual one day off per week—this weekend was unusual for him for now—especially if he has other things to do, so, just like my side effects, it can get to be a balancing act. But thankfully, we haven’t gotten to that point yet.

~~~~~~~~~

Reading my usual sites I ran across an interesting article from Bill St. Clair over at End The War On Freedom. With a title like that can you understand why I just might like this site? It was funny that the hospital blocked his site due to weapons!! LOL

Anyway, he came up with an interesting article this morning entitled “Cancer Therapy Without Side Effects Nearing Trials.” Guaranteed to get me to read it. No Side Effects!!!!!

It seems that nanoparticles can be targeted specifically on cancer cells, then radio frequency wavelengths can be run through the body, causing the particles to heat up, causing the cancer cells to heat up, killing them, but not the healthy cells around them!

Now, right off the top of my head, I’d say that this has a very good chance of working if they can get the cancer cells sufficiently targeted. So, there is hope for you if you ever develop cancer in the not too distant future.

However, being the pessimist that I am, am I to understand that the pharmaceutical industry is going to stand by and let someone start killing off cancer cells without them getting a big piece of the pie? And the two organizations who can do this for them are the FDA and the AMA. This scenario is almost identical to the one that lead to the suppression of the Royal Raymond Rife technology that was killing cancer way back in the 1940s!

BTW, I recently ran across an interesting article entitled “What the American Medical Association hopes you never learn about its true history.” Morris Fishbein, the guy who brought Rife to his knees, features prominently in the story.

~~~~~~~~~

Now, I’m not here intentionally spying on you, but I do like to know who is visiting my blog, what they are looking for, and where they are located. So I have installed a program called SiteMeter. It has led me to learn all sorts of things.

For example, I would have learned that Sunni Maravillosa—see my links—had put a link on her page to let people come visit me via my SiteMeter reports. Fortunately, I think I noticed the link on her page before I had checked SiteMeter, though.

Now, I end up having to make some logical “guesses” on occasion. I happen to have a friend down towards Madison whom I haven’t told yet about my condition. But we also have several friends in common. So when I started getting hits from the Madison area by someone using a news aggregator, I kinda figured it was him. Not for sure yet, just an educated guess.

So I was kinda surprised when I started getting hits from another blogging type of site, so I had to “checka out” as Rawley used to say.

If you recall a few days ago I had mentioned pulling together all the blogs that are talking about the big “C” and posting it somewhere. But as someone--it may even be the Bible--said, “There’s nothing new under the sun.” Someone’s already did a great job of pulling these blogs together. I found out when I started getting hits linked to me from that site.

The site is called Blogged.com, and here’s my page on the site. So, if looking for more cancer blogs or almost any other type of blog is your thing, head on over and see what can be found.

One of the things I noticed, being a former QA kinda guy, is they have a rating system for each blog. And my rating right now is 8.3 out of 10. Now the editor of Blogged.com is the only one who has rated me so far. But, since he sees a lot of these blogs, I thought that an 83% was pretty good. Maybe it’s so low ‘cause I use words like “kinda.”

Now, I’m not going to try to find out what the criteria for a good blog are and go nuts trying to hit a perfect 10. I have too many other things to do. But Amy, it looks like we’ve narrowed your focus a bit! :-P

~~~~~~~~~

I have totally switched over to just one pain med with two different versions: a time released, and a short acting version. It took me a while to get a control system in place so I could remember to take my meds when I needed them, especially in the middle of the night. If I can’t get comfortable due to the pain, then I can’t sleep, and I end up dragging all day. And dragging around all day in pain is no fun at all.

After taking some time to get used to the meds I’ve come to the conclusion that the meds aren’t doing the job. The pain in the hip joint doesn’t respond to the new meds as well as the liver pain. But I still have trouble getting comfortable at night in bed and end up tossing and turning all night.

So, I called the Clinic today and described my situation. I got a call back informing me that my “label directions” have changed. First I’m to try doubling the time-released meds and see how that works. If that doesn’t help enough, then I’m to try doubling the short acting meds and even start dosing every three hours if necessary. Without the acetaminophen, that shouldn’t be an issue. And I should get used to the dose fairly quickly so I won’t be running around all tuckered out.

I just checked my temp and found that I’m at 100.4 degrees. Now, just by feeling my forehead I wouldn’t have guessed that it was that high. Skin temp doesn't always match internal temps. And I have checked it on occasion with a mercury-filled glass thermometer just to double check. And later tonight, my temp will be fine, but I’ll be sweating “like a stuck pig,” as they sometimes say around here. But, I’m to take naproxen sodium for that condition. I’m curious to see how that works. And it’s also an NSAID. Maybe it’ll help the hip and the shoulder.

So, I’m going to put this issue of my blog “to bed” now, pull together the garbage to go out, and wait breathlessly for Ben to come home.

Kunolunkwa, y te quiero!

And remember, "As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

It’s The Weekend!

2008-04-12T22:47:00.001-05:00

And today happens to be one of those rare Saturdays that Ben doesn’t have to work. So, I slept in until late. This evening, when I was planning on updating this, Ben and I have been watching Doctor Who episodes. So, my apologies.

I have to be more careful with my pain med doses. I had my alarm set for 4AM to take my pain meds. But when the alarm went off, I guess I forgot to take my meds. So, 5:30 I wake up, wondering why I’m hurting. Checked the pillbox and found my 4AM meds, duh!

So, between not taking them because I don’t have them handy last night—I dug out a small portable pillbox—and not taking them when the alarm goes off—I’m going to have to work on that—I haven’t had a great day. And I do need to take these meds every four hours.

So, I may get to updating more substantively tomorrow. I hope!

Kunolunkwa y te quiero!

Too Many Things…

2008-04-11T22:02:00.005-05:00

…to talk about, tonight, so I’m just going to bring up one thing tonight. I’ll see if I can get to the rest of them tomorrow.

My brother, Bill, and his lovely wife, Julie, who will be celebrating 12 years of wedded bliss very soon, had invited me to dinner on Thursday night. While they were at it, they invited Julie’s sister, Ellen’s, family, Julie’s parents, and my mother as well. Julie’s sister happens to have two yonkers, a boy and a girl! Can you tell where this is going?

I tried to take some back roads that I haven’t been on in years and what with the darkness, the rain, and the unfamiliarity I got turned around. So I headed over to roads that I knew better and did just fine.

Doing so, however, took me past the roadside location where my best friend died 9 years ago. I guess I’m never going to give up on that, huh? So, I took my hat off as I drove by. The guy that had been riding my bumper all the way from town decided to back off and give me some room for some reason.

It was nice to see Julie’s folks. I had thought of stopping by their house on the way down, only to find out from talking with them that they had sold that place and had moved closer to the grandkids. Sometimes memories work against you!

Julie had cooked a great meal—I wasn’t sure that Bill would tell you, Julie, so I had to put it here—and I found myself wishing I could have eaten a lot more. But it was nice to see how most everyone pitched in to help get it on the table. It was primarily Italian so it had plenty of flavors! I could taste it even with my limping taste buds. At the end of the meal, she served desert and that’s when I was able to start teasing the kids.

Michael is 6-years-old and I hadn’t seen him since Lorie, Tayler, and Robin had last been here in 2002, I believe. You can’t say they grow up fast if you don’t see them for almost six years! They’re just here.

But Michael seems like a great kid, great sense of humor, and full of life.

Gabrielle—I hope I’m spelling this right since I didn’t take notes—was a sweet young lady. I was told that when she found out that she’d be meeting uncle Bill’s brother, she decided against the jeans and t-shirt and went with a skirt and blouse. This at almost 4-years-old!

She had been rather shy so we played it cool for a while. But as I said, at desert, I thought I’d make my move.

I have a pen/stylus for my HP iPAQ that contains a laser pointer and a small flashlight. So, while Gabrielle was settling in to eat her custard pie, I pointed the laser beam at her piece of pie. She stopped, fork poised in the air, and watched what was transpiring.

Now, Michael was sitting right alongside of her and figured it out immediately and enjoys my eternal gratitude for not saying anything about what I was doing. I said he was a good kid!

So, after watching the dot on the pie, and listening to comments from the folks around her for awhile, she went off into the kitchen to talk to Aunt Julie about the “red dot” that was on her pie. Julie, having no idea what was going on had to come back into the dining room to see what was going on. You see, B&J live in an old farmhouse that, in the fall, gets an influx of those Asian beetles that look like ladybugs but stink to high heaven when squished. They wait until spring then, if they survived the eradication and cleaning efforts, to come out of hibernation and make everyone’s life interesting. And we happened to have one flitting around the chandelier earlier in the evening.

But, Julie’s quick, and figured it out real fast what I was up to. So, we had Gabrielle sitting in front of her pie, while her father would “catch” the red dot off her pie and stick it in his mouth to “eat” it. It was hilarious! I looked up and down the table at all the smiles that were going on over my antics, realizing that I like smiles! And these folks know about how I love kids.

I finally got an attack of conscience and had to let her know that it was Uncle Bill’s brother that was messing with her and let her play with the laser pointer for a while.

All and all, a memorable evening.

I don’t know if they could tell that I was really tired, because I hardly moved from my chair and I should have been more physical with the kids.

But, it was time for the cameras to come out and I did get a couple of pictures. You should be able to tell from the pictures that I too that I wasn’t feeling too well because I usually do better.

PHOTOS
Michael is the subject of the first photo, so intent on getting a tiny RC car working.

Gabrielle is the focus of the second photo, sitting in Aunt Julie’s lap, while mom, Ellen, and brother, Michael, look on. Look at those eyes! Don't they just break your heart?

The third photo has that guy from the streets on the left--how does he keep getting into my photos anyway--then my mom, brother Bill, and then Julie!

Now, the fourth photo shows Gabrielle's proud mom, Ellen, along with that street guy again. I'm sorry that it's a little blurry, but that sometimes happens when somone uses cameras they're not used to. As you can probably tell, Ellen is a bon vivant, otherwise known as a fun-loving person. And she's a good listener, too!

Oleander Soup????

2008-04-09T20:50:00.002-05:00

Hey, does anyone have any oleander lying around their yard that they want to get rid of or cut back on? I’m looking for some. I ran across some references that indicate that oleander soup is useful in treating cancer.

The major drawback to this plan is that the oleander plant is poisonous!

Now, most folks will tell you that the entire plant is poisonous whether fresh, dried or boiled. Then, there are other folks who will tell you that boiling the plant destroys the neurotoxins and the rest of the mixture is actually beneficial to the human body.

It seems that Turks, among other ancient peoples, historically have used the plant for medicine, including cancer treatment. You can read about the use of the plant here: Part 1, Part 2, and Part 3.

The problem with the use of oleander as a medicine goes back to the Turkish doctor who tried to bring this medicine to the world. Unfamiliar with governments, especially the US government, he actually told the truth about what he was trying to do. Normally I would think that would be a good thing, but not when dealing with governments.

Once the FDA got wind that the drug that was being made from the oleander plant was an anti-cancer drug, no stone was left unturned trying to keep it from the public.

You may think that the governmental agencies like the FDA are here to protect and serve you. Yeah, just like the police are here to protect and serve you. It reminds me of when, as a college student, I tried to tell my mother that Richard M. Nixon was guilty of a variety of crimes. She just couldn’t believe that the President of the United States would actually break the laws of this country.

I lost a good online friend who couldn’t believe my claim that the US government was actively involved in killing its citizens in this day and age. You see, the governmental agencies have rules that they couldn’t conceive of breaking even if it meant that US citizens would die. If you don’t save them when it is within your power to do so, that’s as good as murder to me.

Take the FDA for example. There are drugs out there that have been approved in quite a few “civilized” countries and that have proven themselves safe and effective. But here in the states, they’ve only started undergoing trials.

Now, there are patients in this country who are terminal, who only have 3 to 6 months to live, that these drugs could, in all likelihood, save from a premature death. Despite the fact that they are approved for use in other countries and are passing the tests in this country, the FDA won’t allow American citizens to take those “foreign” drugs. Even if it means that they DIE!

Now, the patient could jump on a plane to whatever is the closest country utilizing those drugs to seek treatment, if they have the money. But how many can do that?

Now, if you and I are walking down the road and see someone who is drowning in the river next to the road and I refuse to pull that person from the water, have I committed a crime? How about if I prevent you from helping that person? In either case, you wouldn’t suggest that I was “protecting and serving” my fellow man by allowing him to drown. So how is it you think that the FDA is protecting and serving you?

So, the FDA has restricted any sales of oleander-based “nutritional supplements” because one doctor told the truth as he saw it when he said that the plant could treat cancer. Which leave me to the mercies of one company in Honduras, who sells something similar for quite a chunk of change. Or, I’m left with the alternative of seeking the plants to make my own. Assuming that I am going to do this, how are they protecting me now? I won’t have the benefit of some company’s Quality Control policies and procedures. I’m out there on my own! Gee, thanks, FDA!

~~~~~~~~~

Last night I awakened rather abruptly coughing my lungs out. Or, to be more specific, I was coughing stomach contents out of my lungs. Yup, I had some back up due to the gas that I mention every now and again, and it went down the wrong pipe. It’s not exactly a nice way of waking let me assure you. I’m going to have to start taking my nighttime meds even earlier it looks like so I don’t have anything on my stomach when I go to sleep. It would help if I digested things faster too!

~~~~~~~~~

Since the oleander is a subtropical plant there should be quite a few in Florida. Amy, aren’t those tall shrubs against your back wall oleanders? It would be a good idea to keep the dogs away from them.

Kunolunkwa, y te quiero!

"Pain, Or Something Like It….

2008-04-08T22:18:00.001-05:00

...has got a hold on me." Recognize the lyrics to that old Kenny Rogers song?

I slept last night right up ‘til noon today. But it wasn’t an undisturbed sleep. My liver, hip joint, and right shoulder kept waking me up. I did the old sweating number a couple of times, as well, which also woke me up.

But I did learn something last night as well. A while back, I felt too exhausted to get out of bed to get to my pain meds, so I brought my pain meds to bed. Now that I have them bedside, how do I tell if I already took some?

I awake in pain, roll over, take a pain pill, and go back to sleep. I awake later, in pain, roll over, take another pain pill, and go back to sleep. I awake again, in pain… You see my problem? Pretty soon I’m not going to be waking up in pain, if I even wake up at all.

I found that out last night, but I went the opposite way. I didn’t take a pain pill because I might already have taken one and didn’t remember. I’m very big on survival instincts, if you haven’t been able to tell by now. So, I might have caused, or at least contributed to, my pain issues overnight.

So, I’ve had to dig out the pillboxes and I’ll have to figure out a system to stock the two different pain meds so that a sleep-befuddled mind like mine can understand what’s going on in the middle of the night.

I have short term and long acting meds. The long term only needs to be taken twice a day, 12 hours apart. The short term needs to be taken every 4 to 6 hours, even though I no longer have the acetaminophen to worry about. The problem exists that I can stretch things out to six hours when I am feeling good, and that throws any schedule off.

For a while, I was writing the times I took my meds down on my mirror in dry erasable marker just to try and keep track. But I’m not always near my mirror to keep track of what was going on. Then I switched to my iPAQ. Better, but still not satisfying enough for me.

But I have my pill box set up for tomorrow; I’ll see how it works.

Sorry this is so late, but I wanted a hot bath so I’ve been indulging. It does help a bit. And I just took my last pain meds for tonight. Hopefully, I’ll sleep better.

Kunolunkwa, y te quiero!

What To Say, What To Say?

2008-04-07T22:04:00.002-05:00

I think the hardest part of writing this blog is the title. I mean I have 225 posts here. How many titles do you think you can come up with within the scope of the blog?

Anyway, yesterday I slept in until 10 or 11 AM. And trying to deal with the fever and sweats I pretty much stayed in bed all day. Awake! So I was very surprised when I didn’t fall asleep until after 5AM MONDAY MORNING!!!

I don’t know what went on there unless it was the caffeine in the Starbucks Mud Pie ice cream and the Arizona Green Tea. But I didn’t have that much! I swear!

So today I was up before 10AM, called my doctor’s office to follow up on the ER visit, and ended up going in for a visit.

Apparently there is no infection, although the smell of my flatulence and feces tells me that I just may have an intestinal infection. Hey, every bit of information helps to deal with this stuff! The doc says that the fevers/sweats are from the liver and that I do have a tumor in the left hip. So there!

So, I got a prescription renewed for more pain meds without the nasty acetaminophen, so I don’t have to worry about killing my liver. :-) It’s so-o-o funny. The prescriptions are good for only 3 days; they can only prescribe 30 days at a time; along with a long list of what can’t be done. Isn’t it nice to know that my government doesn’t want me to feel too good while I suffer through this? I sometimes think that governments feeds off the pain and suffering so they do as much as possible to see that those conditions occur. I may freak you out later with some ideas about this issue that I've picked up that have me wondering..... The problem is it make too much sense.

I didn’t hear from H. Lee Moffitt today, so I’ll give them a call tomorrow to see if we can’t schedule something a little earlier!

I did get a nap earlier tonight ‘cause I was so-o-o tired but I only wanted to sleep a little while. Fortunately, I got a phone call that woke me up, otherwise I’d probably still be sleeping and would wake up around 2AM. Otherwise, I didn’t have any Starbuck’s ice cream tonight!

Kunolunkwa, y te quiero!

Beer Run!!

2008-04-05T22:15:00.002-05:00

B, double –e, double-r, u, n. Beer run!

I went on a beer run today, without the first “be.” In other words, I went on an ER Run.

I was up early and went out to take care of some business. Got home before Ben ran off to work, so we talked a bit and then I went to lie down. I was tired!!!!

So, from about 12PM to 5PM I stayed in bed. I would awaken for a while and then go back to sleep. I thought about getting up and getting my pain meds ‘cause my liver was killing me, but didn’t even have the energy to do that. I’ve learned; the pain meds are at my bedside now.

But I just felt crappy. So when I woke up enough, I took my temperature and found that I was 101.3 which is above the 100.5 threshold that I’ve been told about. So I called the clinic and eventually got the on-call doc. She sent me to the ER for a look.

My blood tests are pretty good, my neutraphils are somewhere in the 80’s which is great!! Neutraphils are the little buggers that kill cancer cells!

But why did I have the fever? I did forget that the Packer Candy contained acetaminophen, which actually lowers temperatures. So all those temps just below 100 that I've been talking about are due to the PC lowering my fevers; my temps are actually higher.

But what is causing the fever? The blood tests and a couple of x-rays don’t seem to answer that question. So they are going to do some blood cultures to see if there is an infection somewhere in my body. Like a hip joint maybe? I’ll find out Monday.

In the meantime, I’m supposed to rest. So I brought the computer into the bedroom along with my Igloo cooler set up to run on house current. I have all my cool drinks right here by my bed. If I rest anymore, I’m going to have to have you guys stay in bed for me!! Think you can handle that?

But while I was at the ER I went from hot and sweaty to kinda cool. And after not having anything to eat all day, I ended up feeling hungry on the way home at 9:00 PM.

What a day!

Kunolunkwa, y te quiero!

Not So Good Today

2008-04-04T23:18:00.000-05:00

Fever is still just below 100, so that’s cool. I’m curious what is fueling the fever, but right now, I don’t know. But, receiving a phone call early this AM, if 9:19 is early, exacerbated the pain in the hip. I had forgot about the hip being so rudely from a sound sleep, and tried to get out of bed too quickly. So it’s been acting up all day. It doesn’t cause pain that requires me to do something different while walking, but it does ache. The pain actually goes down the front of my thigh to the knee. AND, the tops of both my feet have been feeling an unusual pain there as well. Not a clue what’s going on there, either.

~~~~~~~~~

I ran across another cancer blog while looking for some info on sweating. The guy has been doing this longer since he has kidney cancer. Currently he’s in the hospital having fluid drained from his abdomen. His daughter/wife—I don’t know which—is posting for him. The little I read brings back memories. I sat there nodding my head going, “Yup, yup! That’s what it’s like.” I hope he does well.

He is from Georgia and has a friend from California who also has a blog who is in a similar boat. I didn’t realize that I had had such a good idea when I started mine. We should compile a list of cancer bloggers and publish it somewhere.

~~~~~~~~~

The phone call this AM was from Moffitt, asking for some info and for me to obtain some info from my current supplier. I’m curious why ABCMC hasn’t provided the info and the quantity required. I need ALL my imagery and they gave me only the last PET Scan for Moffitt. I need the original biopsy slides plus all the chemo records. Looks like I have to get more involved again. *sigh*

Another issue is that the earliest they can get me in, so far, is May 12! I explained that I had to wait to find out when I would have the time because VLCC doesn’t answer questions about the “what is next” kinda thing. And since I have been given 3 to 6, May 12 represents almost 2/3rds of my minimum. That doesn’t leave them much time to “save” me. So we’ll see what they have to say, if they can move things ahead at all.

So, Kunolunkwa, y te quiero!

Family Visit

2008-04-03T21:44:00.004-05:00

My cousin, Judy, called a day or two ago and wanted to stop by today. As long as she was coming she thought she’d bring her mom, her sister, her daughter, and our uncle. So it turned into quite a get-together.

The family stuff we talked about!!! And knowing me, I had the computer hooked up and we reviewed several websites, including this blog, and a whole mess of photos.

There are sites where I could post a whole mess of those photos, hand out passwords to the site, and you could download to your heart’s content. Especially since some people don’t empty their inbox too terribly often, right Judy? :-P But it would take a while writing the descriptions...

Speaking of pictures, we took a few with all the cameras here and so I thought I’d post one or two. The first one has my Aunt Imogene and Uncle Art seated in the front row, while the back row starts on the left with my cousin, Judy, Judy's daughter, Tabitha, my cousin, Margaret, and I'm not sure who the guy is on the right. We dragged him in off the street. But don't you think his hair and beard are coming in nicely, not too scruffy looking?

The second picture shows Uncle Art, Aunt Imogene, and that street guy again. Does the German and Norwegian side of the family show at all?

~~~~~~~~~

Today hasn’t been too bad. My temp has been just below 100 all day, but the trigger point is 100.5, so I’m cool. Get it, less than 100.5 --“cool.” Boy I hate it when I have to explain the puns!

The stomach still hasn’t given me any trouble, although I do have small aches and pains all over.

The hip joint still hurts when twisted the wrong way but otherwise isn’t too bad. It was kinda funny how solicitous everyone was with me getting up and down all the time. I tried to make them understand that I can do what I’m looking to do; I just have to move slowly to keep from hurting the darn joint.

So, I guess I’m going to start to get ready for bed. I’ve been tired all day. BTW, I have a post in the works that I’m going to need your help with. You’ll see my dilemma. Later!

Kunolunkwa, y te quiero!

Second Opinion!

2008-04-02T21:20:00.002-05:00

It’s amazing what kind of attention those two words can generate.

Early today I had told Beth of the Radiation Oncology side of the VLCC that I was going to wait until after my vacation to schedule any radiation treatments for my hip. The doc is going on vacation next week so the only time I would have been able to see him was today. His partner, the doctor who didn’t know or who couldn’t tell me anything about my condition the last time the first doc was on vacation to Hawaii, was then recommended to see me to get me started on a course of radiation for my hip.

I declined.

I told you about my “hero,” Kathy, who went through all the different departments to generate the medical records that the H. Lee Moffitt Cancer Center would be interested in, including obtaining my PET Scans. She faxed HLMCC the info and left the CD at the VLCC for me to pick up before my appointment with Physical Therapy. When I stopped by to get it, “they” were ready for me.

I explained that I would be going to Florida on a vacation, and while I was there, I was going to take advantage of the reputation of the HLMCC to get a second opinion.

So why wasn’t I getting started on the radiation treatments?

First, I wanted to see what Physical Therapy had to say. Then, since my vacation was only 10 days away, I figured I didn’t need the hassle. Besides, there is the possibility that the indication of cancer in the hip joint is just a false positive.

OK, between you and me, who reads these scans anyway? Usually, it’s someone who has never spoken to me, someone who couldn’t tell me from Adam. Remember when they called me a 56-year-old FEMALE in the one x-ray report? They have no idea about the old injury, the fact that it was killing me the day of the scan, etc.

Before these scans they keep me in a bed in a quiet darkened room so the “special sugar” only goes to those areas that are actively needing the energy, like the cancer cells. My body, trying to heal tendonitis in my hip joint needed that sugar, too! Bad!

So Kate, one of my favorite nurses, BTW—ask the kids, she’s from Ireland—told me that there were “indications” of damage already occurring. She also said that just a couple of hits of radiation would help with the pain.

The funny thing is that the pain has lessened somewhat today. Using the darn crutches actually causes me to irritate the area; just plain walking carefully doesn’t.

So how was their sales job? Would you have bought into their plans?

Talking with Bridget, from the Physical Therapy department, she said, “I really don’t know what it is that they want me to do for you other than show you how to use the crutches, and you seem to have them down pretty good.” Or words to that effect.

So, she examined me a bit; we talked about what is going on with me, the problems to this point, the cancer, and even about Florida. She just got back a few days ago. She celebrated St. Patrick’s Day in a Cubano restaurante! :-D BTW, Amy, she knows of, or ate at that Brazilian restaurant with all the different types of meat! She just couldn’t remember the name.

She has cancer in her family; she’s seen what can happen. So we talked about the future for me, and the plans I have to beat this thing. She even gave me her card and voicemail number so I can let her know how I’m doing IN 7 MONTHS!

I liked this woman!

~~~~~~~~~

This is my diary. I want to keep a record of what I’m doing here and accept the consequences for any bad choices. I’ve gone on record indicating that I think that the decision to employ radiation therapy on my left hip might not be as necessary as Conventional Medicine seems to make it. I may be wrong, but it was my choice, not theirs.

That brings me to my meds. I have gone on record before regarding the use of proton pump inhibitors, drugs like Prilosec and Protonix. They are meant to be used for a short period of time only, like 3 weeks. I’ve been on them for over 8 months. Constant use of these PPIs causes the body to eventually overcome the effect and the stomach starts to produce acid all over again. Irreversibly! It’s then a hyper-acidic condition and visits to your doctor then for the rest of your miserable life.

I wanted to prevent this. Using soda pop and orange juice for the acid content to help prevent the candida albicans (thrush) was also an excuse to get some acid in my stomach. But I wanted to stop using the drugs! So I talked to Dr. Himmy about it, and all he said was “So stop.”

I wanted to wait until I could set a baseline (thanks, Ben) for the pain level so I could keep track of what was going on. It looks like I won’t be able to do that. So, April 1, no joke, I gave up the Protonix.

It was kinda funny because late yesterday, the first day I was off the drugs, I was hungry! It was the first time that I wanted something to eat, at that intensity, in quite a while. This morning, when I woke up, I was hungry again!

Now, imagine how Protonix sales would go through the roof if folks were to find out that it is actually an appetite suppressant!

So, I’ll keep an eye on the pain levels (so to speak) and where the pains are and see if I can finally stay off the Protonix.

It should help with digestion, metabolizing my magnesium oxide pills, and a variety of other ills. So wish me luck!

Kunolunkwa, y te quiero!

False Positives?

2008-04-01T15:05:00.003-05:00

Apparently, the PET Scans can exhibit false positives:

"As well, false positive results may occur in the presence of active inflammation or infection, since white blood cells that mediate the inflammatory process take up glucose at a high rate."

"False positive scans can occur because of metabolically active tissue taking up the tracer FDG in high concentrations. This may be seen post operatively, in a focus of infection or inflammation."

So let's see, on April 19, 2004 at 5:19 AM I get run into by a spotting truck injuring my left hip joint. Most every time I get inflammation, possibly arthritic inflammation, that joint causes me pain.

My last PET Scan, taken on March 21 of this year, was during such a flare up! That particular black spot on the image to the right of my bladder--my left side in real life--may not be cancer at all, but the indications of severe inflammation. Feels like inflammation and tendonitis!

The doctors have me believing that this is bone cancer. Shouldn't they be telling me that this may just be a reaction to the inflammation?????

If you want to be afraid, talk to the folks that want to control you, for whatever reason. If you want to live with less fear, learn to think for yourself! As Epictetus said, "Only the educated are free."

Kunolunkwa, y te quiero!

No Wonder I Hurt

2008-03-31T20:46:00.002-05:00

I forgot to take my pain meds today. Oh, I took the AM meds, but have been too busy to think about pain; so I just block it out. Later, when it really starts to act up, I mentally review the possible causes and, DUH, I forgot two doses of meds. There are days when I think that I need a keeper.

~~~~~~~~~

What kind of system is it, when a customer, in pain, has to traipse around to 4 different departments around town just to get releases signed so his medical records can be transmitted to another facility for a second opinion? Certainly not one-stop-shopping here.

Things just weren’t working over the phone so it was back to looking for a hero, again. Some system! But I did find a hero, even if she may have been reluctantly drafted into helping. Bless people who have a desire to help their fellow man! Or, to put another way, "Blessed are the merciful, for they shall be shown mercy."

I tried to get my medical records released to H. Lee Moffitt Cancer Center today so I can drive down and get a second opinion. My insurance company actually likes the idea of the second opinion, and I’m wondering why that makes me nervous. But they’re willing to pay to pay for some mileage, per diems for food and lodging, etc. So why not? And if I can catch some rays on the beach, I mean to generate some Vitamin D through the exposure of my pasty white skin to the sun, again, why not? Medical expenses, right?

~~~~~~~~~

So, I’ve talked to my insurance company, the current local Clinic, and the H. Lee Moffitt Cancer Center. I think I have things squared away. Now, I have to see if I can get some vacation time from my company! You may think that's funny; I'm not so sure.

~~~~~~~~~

I have still been running a slight fever. I’m sure it has something to do with the cancer, probably the stuff in the liver. Don’t know for sure.

And using crutches in the rain is a royal pain in the groin, or maybe it’s the hip. That joint or the tendons right there anyway. I still need to find a diagram of that joint so I can determine exactly where the pain is coming from.

BTW, how are the PET Scans working for you guys? I know what it is I’m working on, so I can see what’s there. But you might not be able to. I do have a couple of options for attempting some changes if anyone needs a better view. Let me know.

I’m off to do dishes, wait for Ben to get home, and then it’s off to bed again. Get up, go to bed. Get up, go to bed. There should be more to life than that! :-)

Kunolunkwa, y te quiero!

PET Scan Imagery

2008-03-30T14:30:00.005-05:00

Wow, that went easier than I thought. The only issue is will the pics be large enough to be visible posted to this blog.

~~~~~~~~~

I was diagnosed sometime in August after seeing a Doctor of Osteopathy in June or July who sent me home to take Prilosec OTC. I’m more philosophically in tune with a DO than I am with an MD, but it looks like this time they failed me.

When I saw my new PCP for the first time, he wasted no time referring me to a GI doc. This doc performed an EGD and took several biopsies. Unfortunately, the system lost my biopsies and I had to have the procedure repeated.

Then, I underwent my first PET Scan on 8/27/07. This is what they found. The circled areas are the cancerous sections. You will see some spots that normally take up the radioactive sugar, including the bladder way down below.

Don’t look too close; privacy you know. As the Japanese say, "Nudity is often seen but never looked at!" :-) It's not often that I appear this naked on the Internet! And if you've seen those videos, I can assure you that they are fake. They photoshopped pictures of my head to some other guy's body. Some lucky guy's body! :-D

~~~~~~~~~

“Dramatic Improvement!” As you can see from this 10/19/ 07 pic, there has been a significant reduction in the size of the tumor in the stomach. I’ve circled the areas where the cancer had metastasized but is no longer active. Yay!

So all I have to deal with is the circled stomach tumor and the lower esophagus.

~~~~~~~~~

This is the 12/14/07 pic that shows some regression, the tumor is somewhat larger after all that chemo. This is the scan that solidified the decision to get the Radiation Oncologist involved.

But otherwise a pretty clear image, wouldn't you say?

~~~~~~~~~

Then there's this one. This is the recent, 3/21/08, PET Scan. Notice that the tumor itself is almost gone, if not gone altogether, but there are multiple sites of cancer all over my body. From the circled hip area down near the bladder, to my right side (the left side of the pic) liver area, to the circled lymph node up where they had been active from the first pic.

Now, going from little bit of tumor in the 12/14 scan to the cancer all over the 3/21 scan, something has happened. What could that be?

One of the things that I, and others, have complained about is the efforts by the allopaths to reduce our immune system’s ability to fight off cancer by dosing us with chemicals that are supposed to kill our cancer but actually let’s some of the drug-resistant cancers to grow.

If you recall, I was so sick, my blood levels were so bad, that they couldn’t even give me chemo the last two or three weeks in a row. So let’s see, a severely weakened immune system, an increase in the amount of cancer sites; I’m starting to see a pattern here.

So, only the future can tell what will happen with this cancer. I’ll continue to do what I can to fight it off. I'll be available to take any questions you may have, although Ben and I may run out to a Mexican restaurante!

Kunolunkwa, y te quiero!

Another March Birthday Wish

2008-03-30T10:10:00.003-05:00

I wasn't kidding when I said that a majority of my family was born in the spring and are actually Aries, astrologically speaking. It makes remembering the birthdays kinda easy. Now if I can just keep the 'who on what day' correct, we'll be fine.

So, Happy Birthday, family member!

I'm reticent about telling b-days for people on line, if you know what I mean. If you want to acknowledge my b-day wish and broadcast the date to the world, that's fine with me. I just want you to know thta I know...

And on another matter, while I'm thinking about it, CJ, if you're out there today, it's kinda funny 'cause I'll be putting an email together for another CJ today to discuss what to do, what to do, health-wise. Coincidence? I think so! :-) But still curious.

Oh, speaking of birthdays, there's another one coming up where someone actually turns 50 the day after his 10th wedding anniversary. Are we going to let a 50th go by unnoticed? I hope not.

OK, so I'm up, took my pain meds right away, but I need to get the rest of the meds going and then start thinking about breakfast. I still want to get the PET Scans posted today plus read all the sites I normally visit. And now that I can't multi-task by running back and forth between rooms it'll take more time.

Again, Happy Birthday, kunolunkwa, y te quiero mucho. Those words mean so much more today!

H. Benjamin B.?

2008-03-29T21:52:00.003-05:00

Well, I’m a four-legged critter now! Yup, I’m on crutches. The docs want me to keep as much weight off this hip joint as possible, so I stopped by St. Vincent De Paul and found a pair for $5. Have you ever tried to get around on crutches? Especially when it entails holding one leg in the air? Did I mention that it hurts to hold the leg up in the air like that?

I figure that for all the stuff I’ve given SVDP over the years I could use some of their help now. I still have a bunch of stuff to go over there if I ever get it all pulled together.

But, I may just have to move the computer back into the bedroom. I’ve had a low-grade fever again today, and slept quite a bit this afternoon. And then there’s the “keep off my hip” thing going on.

~~~~~~~~~

Maybe you girls out there can help me. I’ve discussed the Beau lines on my finger nails before. The chemo has really weakened my nails. I keep them trimmed as short as I can and they still split, or maybe I should say “flake.” Is there anything that I can do, something that I can buy and apply, to help keep the nails from coming apart so easily?

~~~~~~~~~

I got my “You Don’t Have To Be Afraid Of Cancer Anymore” book today. Now where have I heard that theme before? :-P

There isn’t a lot in it specifically about esophageal cancer, but they do cover quite a lot of the rest of them. So it looks like I’ll have to get some reading in.

~~~~~~~~~

BTW, I figure if I commit myself, I’ll try harder to get something done. So, with Ben’s help, I plan on posting my PET Scans tomorrow so you can see that I’m not pulling someone’s leg through all this.

If I don’t get it posted, bitch at me about it, will you? “Bitch avoidance” is a good source of motivation, but you have to bitch occasionally to make it work!! But the carrot works much better than the stick most of the time!

~~~~~~~~~

BTW, I didn’t mention that yesterday I was awakened from a sound sleep about 9:00AM by a group of people at my front door. I got up, answered the door, and was about to point out my “No Soliciting” sticker on the door, preparing to do battle with a group of Jehovah’s Witness folks who don’t believe that I mean what I say when I post the sign, when I recognized my aunt and my mother in the group! I was too focused on the guy in front.

Turns out I was half right; the guy in front was my Aunt Bert’s husband, and I apologize that I can’t remember his name, but he is/was a pastor of a church out west of the Fox Valley.

So, I invited them in, ran, OK hobbled, off to the bedroom to put some clothes on, and came back for a chat. It was heart-warming that, in these days of high gas prices, they would travel all that way, stop by to pick up my mom, and then to drive up here to GB.

They invited me out to dinner, by then it was 11:00, but I still hadn’t taken all my meds yet. I had grabbed my pain meds right away. It’s amazing how quickly we become addicted to those darn things when we have severe pain on occasion.

I had to regretfully decline. Without being prepared ahead of time to go out, I can’t just grab my coat and go anymore. I have some meds that I need to take on an empty stomach. Then I have to wait an hour before there are meds that I have to take on a full stomach.

I don’t know if you remember my ‘Carafate fiasco;’ Carafate 4 times a day, nothing to eat two hours before and one hour after, meant that for 12 hours a day I couldn’t eat, OK, make that suck Ensure. And, as sick as I was, that was about all the time I was awake!

So, although things have gotten somewhat better, it isn’t by a whole heck of a lot. And I do notice when I miss my pain meds, now! Like today! Oh, well.

~~~~~~~~~

“H. Benjamin B.” That’s how they have me listed now at the Aurora Baycare Medical Center. Somehow, they’ve combined my name, H. Benjamin, along with my father’s name, Benjamin B., into one multi-purpose name. I suppose, if my father ever came back, that they want to have all their bases covered. It gives me shivers all over to know that they are on the ball, paying so much attention to the details of my medical treatment.

So, I’m off to wait for Ben to come home and to browse my new book. But one question I have on my mind is, how are you prepared for cancer if it should ever show up in your life? Most of what Conventional Medicine does is move money from your insurance company’s pockets to theirs and does little to prolong your life. Read the medical journals, or read the journalists who report on them. Then start taking the vitamins and herbals that are recommended to prevent cancer. You don’t want what I have, trust me!

Kunolunkwa, y te quiero mucho!

Now I’m Depressed!

2008-03-27T22:05:00.001-05:00

No, not THAT way! Let me explain, officer.

I went in Monday to see a doctor only to hear some not-so-good news. It means that I’m gonna hafta do some work. The news on Monday precipitated a visit with a doctor on Tuesday. The visit on Tuesday turned out to be unnecessary because the imagery that was obtained wasn’t the proper imagery needed for this doctor.

I pointed out that a CT scan was taken, but was told that a high-contrast media was necessary to see what they wanted to see. Today’s CT scan was supposed to take care of that.

So I did my research and found that my Power Port—I’m a Power Ranger now—was capable of accepting the pressures necessary to get all the contrast media into my body in a short period of time. The last time I had a CT w/ contrast I had media running down my arm from the IV. I didn’t want that happening again.

So, I mentioned it to the tech escorting me into the bowels of the department. “Oh, we don’t need to worry about that. We don’t need it for this scan.” WTF? I would have stopped but I was already hobbling as slow as I could, I mean as fast as I could. Oh, you know what I mean.

So, if they don’t need the contrast, why am I doing the scams all over again? I mean “scans.” Got bills that need paying, Aurora? I got an insurance company that’ll pay.

I have been joking lately that I’ve finally reached the group that includes the females, the aged, and the infirmed. I just thought that I’d never make all three categories at once, “Don’t you worry your pretty little head about it. Just shut up and get on the table.” Ladies, I do know how you feel, now.

I asked what the pictures showed since the x-ray taken on 3/19 showed an unremarkable hip joint. The tech, quite properly I suppose, stated that he just runs them and isn’t authorized to interpret them. But he did say that they did look just like hip joints. They looked at both of them. His attempt at humor was appreciated, although not by much. :-)

I mentioned after the CT scam was done, that I needed to see someone about the results of my last two PET scans. To make a long story short—now there’s something new—the tech took me upstairs to the 3rd floor and talked to them about what I didn’t get. Then he took me back down stairs to wait. There are good employees working there. To bad the system wasn’t as good.

Finally an employee came out and said that it would take 2 hours to get what I wanted and asked if I wanted to wait.

I asked if they could send the discs to me like they had on Wednesday. “Oh we can’t do that; these can only go to a doctor through the mail.” So, I get to waste fuel running over to the hospital tomorrow.

Can you see why I get confused?

Why can’t they have procedures in place, with a little check mark next to my name in my records, so they know that, after the doctor has had the chance to surprise me, they can somehow—again, following a procedure—deliver into my sweaty little hands the imagery that I’m looking for?

And it seems that the customer, I mean the patient, needs a champion to get things done. Dr. Patel got me the first two scans. I tried on my own this last time to get the imagery I wanted and you know what happened there. And today, I had a champion in the guise of a technician get me what I wanted, if I’m not being premature.

~~~~~~~~~

So I’ve been playing on the computer trying to get some things done. But I was so-o-o-o groggy. I trundled off to bed in the middle of the afternoon to see if I could reduce the effects of the meds. I fell asleep for a while, but I had strange dreams. I dreamt I was in pain.

Now, I want the imagery from the PET Scans so I can determine the cancerous areas so I can ignore the pain from those areas. That way anything new will be from those areas not associated with cancer. But it’s hard to do that having a 20 second look at a computer screen while the doctor is manipulating the image.

And does it matter if you have real pain or if the pain is from a dream state? It still hurts. And I’m not so sure that it wasn’t real pain that faded just before I woke up.

So, we’ll see how I sleep tonight.

~~~~~~~~~

I did order a book on Cancer. Now, Amy sent a book on cancer that has a lot of good info, but not what I’m looking for.

Have you answered the question what will you do if and when, God Forbid, you find out that you have cancer. What will you do?

I was already so sick, thinking that it was just gastritis, that I didn’t know what to do. In contrast, Bill Sardi comments, “Strikingly, when asked, most oncologists (cancer doctors) would not elect to undergo these same treatments if diagnosed with cancer.”

What to do, what to do? Since I’m on my own now, with the love and support of my family and you guys—Thanks, BTW—I need to figure out where to go from here. And, if I can figure out what you can do to keep yourself from getting into my situation, then at least I will have helped my fellow man as a bad example!! :-)

So, I’ve already downloaded the couple of .pdfs to read. I’ll print them out soon and get them digested. Then I’ll have a 500+ page book to read when it gets here.

~~~~~~~~~

Have I mentioned lately how much I appreciate my kids? When Ben made his comment about the barstools and I picked up on how good an idea that was, I didn’t realize how good that would make me feel. Although I didn’t get the counter done like I wanted, I did get a little further today, and every litter bit hurts, I mean every little bit helps!

So, as you can see, it can get kinda confusing when your world doesn’t make sense. And what’s worse is that when the people who have your life in their hands don’t make sense. Or at least, doesn’t communicate anything approaching sense.

Oh, and hey! Did I mention that I’m starting mouth sores again? Mouth sores? Without chemo?

I need to go in to the hospital tomorrow because I also need to see if I can pick up a couple of letters from one of the doctors that I’ve been waiting on now for a month? The nurses say that he’s having to do the work of 2-1/2 doctors. That makes me feel real confident about the level of care I got, too!!

Anyway, kunolunkwa, y te quiero. And if you happen to see my kids, make sure that YOU tell them that I love them, just in case I haven’t told them lately.

Well THAT Was Fun!

2008-03-26T21:40:00.002-05:00

I had to go out this AM to take care of some paperwork, so while I was out I started looking for a barstool. Since I’ve gotten into drinking so heavily lately…. No, wait, that’s a different story.

I was talking with Ben yesterday, or last night, I don’t remember, and somehow we got on the subject of a barstool. I’m supposed to keep the weight off my left hip and I still want to get the dishes done and the like, so why not work from a barstool?

BTW, I got the X-ray results back from my PCP. The conclusion was that it was an “Unremarkable x-rays of the left hip.” OK, now I’m confused.

Anyway, while I was out I stopped at St. Vincent’s, Goodwill, and Wal Mart looking for a barstool and found nothing worth mentioning. I checked out The Men’s Mall and found a good stool, padded, made in Tennessee, for less than $13. I bought it, brought it home and started using it in the kitchen. Not only did I get my dishes done, but I also got most of the counter top clean, and especially the sink area. That stainless steel really needs the attention or it looks like crap!

So, do you think I’m felling better? If it weren’t for the hip, I’d be getting a lot more done. Tomorrow, I’ll get the rest of the counter tops and the stovetop done!!! Now THAT will take some effort! BTW, I use a product called Greased Lightning. It really seems to work well for me!

I’m just wondering how I’ll get the kitchen floor washed from my barstool. Any ideas?

While I was out, I found that the prices for some things are cheaper at TMM than they are at WM! So I picked up 4 small Corelle bowls. I’ve wanted some “rice bowls” for a long time now. I got used to them when an old girlfriend gave me a set. She was younger then. So was I!

Anyway, I figured now was the time to get them. I know, I know; I’ve been trying to get rid of things and actually discourage folks from getting me “things.” I’m already sorting through what I have so the kids won’t have to at some later point in time, down the road. But I just couldn’t resist. And they were cheaper than at Wal Mart! How’s that for justification?

I found out today that I can actually drop off to sleep, in the middle of the day, sitting upright in a kitchen chair and start dreaming right then and there! Aren’t drugs wonderful?

You’re not going to believe this, but the stink I made at the ABCMC on Tuesday morning about my imagery and records actually resulted in getting a CD of PET scans from 12/14 and 3/21 in the mail today. Are you shocked? Don’t be.

The first two PET Scans came to me on two different CDs for a reason; there are too many files to fit two scans on one CD. So when I received one CD today, I knew something was up. And I was right. The files that I wanted from the last scan on the 21rst weren’t there. There just wasn’t enough room on the CD. Did you miss that? The very important files that I wanted to peruse to understand what’s going on with me a little better weren’t there.

Do you know what I would call any company that provided me with service like this in the private sector? A former supplier.

I’ll have to see if I can’t get things straightened out tomorrow.

Well, it’s off to take some more drugs!! Kunolunkwa, y te quiero!

Not Much To Say Tonight, Again

2008-03-25T20:53:00.002-05:00

Still recovering from the shock, I guess. And getting up early today for a consultation didn't help. And I'm still kinda wondering what for.

I reported to the doctor's office for my consult and didn't seem to get anywhere. I had to fill out all the paperwork all over again. If these folks were in charge of Homeland Security, I'd sleep a lot easier at night. They had my father listed on my account!! Then, come to find out, before they can talk to me enough to make any sense--although they did charge me for today's consult--they need to take a CT scan which has now been scheduled for Thursday.

I tried to get the imagery from my last 2 PET Scans and I'm sure that you can guess how that went. You can tell that they are socialists and not laissez-faire capitalists. I came home empty handed with some weak promises from a receptionist who honestly said that she didn't know what was up. But I do admire her company spirit for expecting me to believe her promises after overhearing her phone calls to the "people who know."

I'm told that the new pain meds, at the levels I have, will make me drowsy for a while, so I did take a short nap today but it didn't seem to help. I'm also running a low-grade fever again.

I called Nancy today 'cause she doesn't have Internet service and broke the news to her. While on the phone with her, my daughter called so I talked with Amy for a while as well.

I've been trying to get some paperwork done, but concentration does appear to be an issue. I've been complaining to the kids that my success rate with Sudoku has been suffering lately so I should have had somewhat of a clue to what is going on. But I guess I'll just have to see what I can do!

So, before I go back and write a few checks, I thought I'd keep you guys updated.

It's not as hard to write about this as you would think. Mostly because it's just about someone that I'm pretty familiar with, I tell myself. I've told Ben that he can be expecting jokes about the situation from me as I get used to it. But, at least, as Cuz says, I have options of what I can do.

You guys, on the other hand, don't have much in the way of options if you continue to keep in contact with me and my blog. And it's that "not being able to do anything" thing that makes it hard on you. I know that; I'm very aware of that. And I feel very sorry for you guys.

So, hang in there and I'm sure that we'll all get through this just fine!

Kunolunkwa, y te quiero!

Ain’t Gonna Say A Whole Lot…

2008-03-24T19:31:00.002-05:00

…tonight; I’ll need some time to digest what I’ve heard today. I hope that you’re sitting down!

The cancer has spread big time! It’s all over my body. That hip joint issue—cancer. There is cancer in the liver and lungs and just all over. And the hip issue just started the last couple of weeks. Hmmmmm.

The times of three to six months were bandied about today.

I wondered what was up when Dr. Himmy “got sick.” And I wondered when Nurse Beth was invited to join in my consultation. I still don’t know why she was there, though.

But it looks like I’d better use up my gift cards pretty quick—I had a Caesar Salad tonight and it took them forever to run the gift cards through—before I expire! :-) And, again, I do appreciate the thought behind the gift cards.

But I did get some more Packer Candy, tonight. The current stuff and the NSAID just aren’t handling the pain. The doc wants me to limit using that hip joint. He has ordered me to ride the cane for right now, and using my handicap sticker. I will be even more groggy, and might even need to rent a wheelchair. I may even move the computer back into the bedroom. And I just got most of the paperwork off the floor in the office!!!!

I also have to see another doctor tomorrow bright and early so it looks like I can‘t get too reacquainted with my old friends Ron Bacardi and Jose Quervo tonight. This doc will tell me what they have to do to my joint to provide some “Quality of Life.”

I’ve been wondering what was going on because I’ve been making mistakes on my Sudoku puzzles lately. I got into one that said it was quick and easy and it took 45 minutes for me to finish. But even some of the old standbys have taken way too long to finish. I guess that’s in keeping with what’s going on though. My thought process has been messing up; I figured it was just me.

Before you get too upset, there are a couple of things that we’ll try. Amy, the doc said that he’d get the paperwork back to me very soon, maybe even tomorrow. So, we can get started on that vaccine.

I’d still like to get a second opinion at HLM. I was hoping that I’d be in better shape so that I could enjoy a trip to Florida, but it looks like that’s not gonna happen.

And BTW, just so’s you know, I’m not concerned about dying. It’s all a part of life. And ever since I did get run over by a spotting truck, I have been kinda wondering about it. One of these days I’ll tell you all about it.

So, I’m going to post this and make a few calls. Kunolunkwa, y te quiero!

Dr. "Himmy" Is Sick...

2008-03-24T10:22:00.002-05:00

...and didn't even bother to come in today. So much for that appointment.

The PET Scan went well, as far as I know, on Friday. And that's the results that I'm expecting to discuss today. So it looks like I'll have to go in later, 'long about 5:00PM, for a consultation with another doctor.

So, if I don't get something posted quite as early as you'd like, that's why.

I just realized that whichever way the consult goes, tonight might be a good night to get reaquainteed with Demon Rum, or a little bit o' the Irish, or whatever. I'll have to think about that!

Kunolunkwa, y te quiero!

BTW, in which universe does "shall not be infringed" become interpreted to mean "reasonable restrictions?"

And TWO March 23 'Hoppy' Birthdays!

2008-03-23T08:09:00.003-05:00

These birthdays today are a bit different from the others. Both of the people I refer to today have long since passed away. Benjamin L., my grandfather, was born on this day back in 1893. His son, my father, Benjamin B., was born on this day in 1928.

I vaguely remember my grandfather; he died in 1955. I would have liked to learn more about him from my father, but he died six years later, in 1961.

Four generations: grandfather, father, son, and grandson; all born within four days of each other. All with Benjamin in their names. What's so special about the first day of summer, anyway?

Good Saturday!

2008-03-22T20:57:00.000-05:00

I’m tired again. But my hip joint isn’t hurting as much.

I slept late this morning; got up around 10:00. I was tired, so I went back to bed, which is kinda unusual for me, after Ben went off to work. I slept until around 6:00PM.

You don’t realize how much you use your hip joint until you injure it. Just to turn over in bed requires use of the joint. Using the joint causes pain, and pain causes an awakening from sleep. A return to sleep doesn’t occur instantaneously. So, too much of that and you don’t get much sleep at all.

However, being awake also means wanting to do things and 'doing things' exacerbates the inflamed joint tendons. Not a plan. So I figured I’d sleep.

When I awakened at 6:00 I wondered how I was ever going to get back to sleep tonight. But since I am already tired, I guess I won’t have any problems. It’s funny how that works.

Not much to say tonight ‘cause I wasn’t up much today to do anything.

So, Kunolunkwa, y te quiero!

And TWO March 22 Birthdays!

2008-03-22T10:42:00.002-05:00

Happy Birthday guys!

One of the birthdays belongs to someone in my family, someone very near and dear to me. And the other birthday belongs to a friend who read this blog.

So you can see how hard it woud be for me to forget my friends birthday. All that has to happen is that it get mentioned once, I document it somewhere, and it's mine, Mine, MINE forever more! Until I lose my memory, which has happened. :-) But the memory link is there!

Now, I know, I know, I'll see it when you visit my blog, so there's no need to respond. You know how I am about privacy, and so I won't put names to dates and verse vice-a! :-)

Just let it be said that I remembered, and wished you both the Happiest of Birthdays during this, the early days of a new spring!

Happy Birthday!

A March 21 Birthday!

2008-03-21T21:55:00.002-05:00

Happy Birthday!

I was lying in the hot tub, soaking up as much heat as I could when I remembered something I had wanted to add to today’s post. I feel a lot better, BTW.

I have a birthday in the family today. Rather than broadcast whose and how old, etc. I figured I’d just post a birthday wish here. Although this person is getting rather old. :-D

I had spoken with my son about it before he had run off to work today, but it was this afternoon that I finally decided to say something about it here.

So, again, Happy Birthday, with love, and I wish you many, many more!

Real Moody Today For Some Reason

2008-03-21T20:09:00.002-05:00

I was up after midnight but still got up at 6:00 for my 7:15 PET Scan appointment. So I’ve been tired all day. I even fell asleep on the table.

The procedure went well, other than falling asleep. The technician was rather talkative as he showed me back toward the familiar sections of the facility. Now, I don’t want to be reading too much into this, based on a sample size of 4 scans, but it may bode well for the results on Monday. He was talkative back when the diagnosis was “Dramatic Improvement.”

~~~~~~~~~

I stopped by Wendy’s on the way home to try and use up my gift cards. Thank you, BTW! You know who you are!!!!

I’m always complaining about the graduates of the government schools. The dropouts almost always seem to do better. Why is that? Even back when I was a kid there was a saying that A-students went on to teach, while B-students ended up working for C-students.

But you’d figure that an order taker/ assistant manager would know how to handle gift cards. I received two cards. The first had already been used so I know it worked and still has some credit on it; the other card hasn’t been touched at all. When I offered the first card I was told that the card had been declined. The same explanation came when I tried to use the second card. Looking at the receipts offered to me to prove that the card had been declined I read “Invalid user ID/pswd.”

What would that tell you? The user of that little card reader couldn’t input their ID and password correctly. Yet they made it sound like I tried to rip them off with using bogus cards. And this was the ranking person in the restaurant.

Imagine what would have happened if I had only those cards to pay for my order! Just one more reason I don't trust digital cash.

At least this time I got a decent amount of gravy. Although I am a fan, now, of the B&G, the breakfast burrito isn’t very good at all! The way the restaurant is run leaves something to be desired. I remember when Wendy's was a step up from the rest of the fast foods. Now, the food is barely any better, just more expensive.

~~~~~~~~~

I got home and lay down for a while. Then I got back up and drove over to mi amiga’s house and got to play with her daughter, Daniela, for a couple of hours. Her daddy was there and printed out a calendar with her photo, and a page of other photos, for me to have. No, he’s not proud at all! :-)

She is so cute, though. Six months old last week, standing up pretty well while hanging on to something, and getting ready to cut some teeth; I want one!!!

If I ever get my scanner working, I’ll put her pics in my computer. I did get a video of her making funny fussing noises for some reason. I need to get that into the computer; it wouldn’t work in my handheld. I wonder if it will work in my iPod.

Is it strange that I go to my friend’s house, play with her daughter, and spend most of the rest of my time talking to the proud papa? Well, they are latinos after all… No se!

~~~~~~~~~

Stopped to grab a couple of staples at the store, and could barely walk out afterward. Obviously, I had overstayed my pain and anti-inflammatory meds. Been that way the rest of the day.

So, is it the pain meds, the anti-inflammatory meds, the meds given for the PET Scan, and the lack of sleep responsible for my run down, drug out mood? Don’t know. Moods are funny that way.

I thought it funny when I ran across a Pisces bookmark I purchased in Ybor City, Florida, a year or two ago. One comment about the personality of a Pisces was “Self-pitying when low.” Haven’t checked lately but I must be at least a quart low about now.

Kunolunkwa, y te quiero!

Which Would You Choose?

2008-03-19T20:59:00.001-05:00

I had to make an interesting choice today: morphine or Mobic, an NSAID. I went with the NSAID.

[sarcasm on]The left hip joint has been feeling just wonderful today. [sarcasm off] So I called the Clinic this morning to schedule an appointment to see the doctor. Luckily, they could get me in this afternoon.

So, if you called this afternoon and I didn’t answer, that’s probably where I was. And I am suffering some cancer drug hearing impairment, as it turns out. Several times when I should have heard the phone, I only noticed the vibrating feature.

Evidence so far would indicate that it isn’t the joint itself, but the tendons, that are causing the pain. They took an x-ray today to see what they can see. If that doesn’t work it sounds like MRI time. I can’t recall having one of those. So for now my choices were to live with stronger pain meds, or go with an anti-inflammatory that, combined with my Warfarin, can cause me to bleed internally.

Why isn’t it ever easy? Then again, for me, maybe it is. It could be a lot worse.

That’s one of the things that I discussed with Nurse Diane today. She’s the one who kept calling me “Sir” during several phone conversations that we’ve had and who is undergoing cancer treatment. She was encouraged to hear that I’ve had some of the same symptoms that she has been having. And we discussed how hard it is to get people to understand and believe us sometimes about what we are going through.

She called another nurse over, saying, “Come over here. Ben’s been having the same symptoms that I complain about. I’m NOT crazy!” So we three discussed symptoms for a while.

We also discussed the problems that the people in our lives have watching us in sickness and in pain and how they feel so helpless to do anything that can ease our suffering. I wanted her to know the situation from the other point of view, too. I can’t imagine being married and having to go through all the pain I would be causing my partner. It’s bad enough having to have my kids go through it. But then again, I am a pretty big softy!

~~~~~~~~~

I got to use my handicapped parking permit today!! When I stopped by Shopko, all the normal spots nearby were filled, so I broke down and used the permit. I didn’t at the Clinic; there were other spots near enough that I didn’t need to. But then again, they made me walk all over at the Clinic. Maybe I should have parked closer.

Walking exacerbates the problem, the pain. My attempts at exercise have probably contributed to the inflammation. So, I really should be limiting the amount of walking I do. Good Luck with that!

You know me; I’ll keep you updated! Speaking of updated, I kinda updated the Sticky Schedule recently if you hadn't noticed.

Kunolunkwa, y te quiero!

You Could Knock Me Over With A Feather

2008-03-18T21:58:00.003-05:00

No, there isn't any good news. Quite the opposite!

I think I need to call a doctor. Remember that I mentioned my old "getting run over by a spotting truck" injury to my left hip joint from 3 years and 11 months ago tomorrow was acting up? Well, now it's acting up big-time! It wouldn't take too big a feather to knock me over right now.

I guess that I just can't get enough of that pain thing. So, I may have to go back to the doctor and be put on aspirin or something.

I have been exercising as much as I can and my calfs (calves?) are showing it. I'm starting to get my 'hard body' back! OK, so maybe there is some good news after all. Now I need my arms to tighten up so they can support my weight when I have to use my cane. BTW, thanks Kris for the cane; it has come in handy quite a few times.

Maybe I'll get to use my temporary handicap parking permit after all!

Don't have much to tell tonight. There's a lot going on, but we need to make more sense out of the situation before I can say anything. Let's just say that Type Number Three has proven to be true to form. The question is "what to do; what to do."

Kunolunkwa, y te quiero!

Om Mani Padme Hum

2008-03-17T20:26:00.002-05:00

I’m cool; I’m cool. It just takes a while to get over it, that’s all. Not that I can ever get over it. But at some point you have to just write it off, let it go, and get on with life.

This past week hasn’t been a particularly good one. I’m used to the ‘being sick’ part, and as ‘being sick’ goes, this last week has been pretty good. I’m starting to see light at the end of the tunnel. Then again, being the pessimist that I am because I like being right, I realize that the light at the end of the tunnel may just well be a train! But I keep hoping.

This past week has been pretty bad due to the actions of my fellow humans. I’d like to describe just one incident from last week, if I may.

Like a lot of people, I needed to obtain a loan to purchase my current vehicle. At the same time, I took out a Death and Disability insurance policy on the loan. If I die, the kids get my vehicle free and clear. It’s while I’m disabled that things get sticky. Insurance companies don’t like to pay off on policies.

Late last month I got a nasty letter saying, “Since you haven’t seen fit to fill out the form we sent you and return it to us, we’re going to terminate your policy in two weeks.” I called and responded that I’d be happy to fill out their form; they just have to send me one! I haven’t received any mail from them until the nasty-gram. They said they’d send another one out right away.

Ten days later I was still waiting for the USPS to “deliver de letter, de sooner de better!” (It still hasn’t gotten here. I mean Minneapolis isn’t THAT far away.)

So, another call to the insurance company last Thursday resulted in “We’re so sorry. It went out the same day we last talked, blah, blah, blah!”

It makes you wonder why they didn’t send a form along with the nasty-gram, doesn’t it?

So, rather than have them mail another and have the USPS use the letter to toss under the wheels so the mail truck can get out of another snow drift—OK, what’s your guess where it went?—I asked if they could fax the form directly to my doctor. They said “Sure, we can do that. We’ll do it right now. What’s the fax number?” So I gave them the fax number and off we went, I thought!

I needed to let the doctor’s office know whom the fax was coming for, and what I needed from them. It just happened to be 8 minutes after 5:00PM but I called the doctor’s office anyway. I got the after-hours computerized answering machine. I stayed on the line to talk to a person and requested that I be transferred to my doctor’s office’s voice mail. “We can’t do that. You’ll have to call back during office hours in the morning. This line is just for emergencies.” That’s why it took so long to get through the computerized menu!

So I set my alarm and called back bright and early. Of course I got the old “Due to the high volume of calls it may take until Doomsday for us to answer the phone but we will take you in the order in which you called. BTW, we may monitor this call for Quality Assurance purposes.” I wish they would have.

After about a 10-minute wait I finally got a human, and I’m being kind. There’s another word lurking in the back of my thoughts even today, three days later.

I asked for my doctor’s office and the, the, ah….woman… said that they don’t do it that way. I have to leave a message and they may return my call. Then she wanted my name so she could call up my record and leave my message and that’s when all heck broke loose. I tried to explain that I don’t use my first name, just my first initial and that I wasn’t sure how they had it in the computer.

She wouldn’t accept that. I had to give her my “legal first name.” I tried to tell her that even if I gave her that name, it wouldn’t be in the computer because I DON’T USE THAT NAME and the account wasn’t set up with it. But she wouldn’t listen. She said, quite snottily, “You are just wasting our time if you don’t give me that name.”

That’s when I lost it. I hung up on the, ah, the…woman!

I got dressed and drove to my doctor's office so I could actually talk to a human. I handed the receptionist, Bonnie, my driver’s license and said, “That’s my name. I need to know if a fax was received last night regarding my disability status.”

Bonnie looked at me kinda strange, and said that she’d check. She came back and said that nothing had been received.

Even when I give them the fax number, the insurance company couldn’t deliver the fax. Or maybe AT&T was on strike. (OK, what’s your explanation?)

So I called the insurance company and asked if the form had been faxed. “Of course it was.”

“Well that’s funny because I’m here at my doctor’s office and they have no fax to back up your statement.”

“Ah, ah, ah….”

“Do you think that it is possible that you could fax it here while I wait?”

“Ah, yeah, sure, we can do that? What’s the fax number?”

“Well just take a look at the fax transmission verification report.”

“Well, I, uh, I don’t seem to have one in your file.”

“Fine, just let me ask the receptionist.”

So, I got the insurance company to finally get the form to me through the use of my doctor’s office. The girls, excuse me, NO! Don’t excuse me! I’m not calling them by the same description that I gave that other, that, …woman! The girls in the office did a wonderful job and got the darned form filled out and back to me very quickly.

I filled the rest of it out, photocopied it, had it faxed to the insurance company, and mailed them a copy as well. I’m sure time will tell that I should have sent it registered mail, but by then I was so pissed I was seeing red, hence the title of this screed, Om Mani Padme Hum.

So, how was your day? LOL

Would it surprise you to know that was probably the least of my worries last week? You may eventually hear about more as time progresses. And it gets weirder.

~~~~~~~~~

As long as I was out I stopped by Wendy’s and tried their biscuits and gravy again, eating it there instead of taking it home and eating it hours or days later. It’s still pretty good! A little short on portions, but still good!!!

~~~~~~~~~

I received another photo of a little angel and her mother. I think it’s going to have to go up on my screensaver.

It’s been quite a while since I’ve seen mom. I probably saw her the last time at her mom’s wedding, when we were all a little younger. But I’ve been getting pics of the angel fairly regularly, thanks to grandma!

I would post the photo but I don’t have permissions, so I’m going to cheat just a bit. I ran it over to a photo-editing program and cropped everything but the eyes of the angel. You have to see these eyes. And I’m wondering how they will turn out in this format, so let me finish this up and post it.

~~~~~~~~~

BTW, I keep posting the link to the Fully Informed Jury Association via a quote by L. Neil Smith. I just might have to stop. If you know your jury rights, would it surprise you to know that the judge and prosecuting attorney don’t want you on the jury? Read the adventures of one juror.

Kunolunkwa, y te quiero!

The Old Ben!

2008-03-15T21:27:00.002-05:00

That’s how I feel today, like the old Ben. Now, I don’t mean the Ben from two years ago,; I feel like the Ben from twenty years in the future!

Remember back when I had pain in the joints and I asked one of the Doctors of the Day if there were something I could take for the joint pain and he kicked me off the PC altogether? That’s how I feel now.

Three years, ten months, three weeks, and three days ago I was crossing a parking lot and I had a spotting truck run into me, knocking me unconscious and putting me in Emergency. My left hip joint was affected at that time. I had a big ol’ bruise on my left thigh. I had various aches and pains for several weeks.

It’s that same joint that is causing me fits right now. At the same time, other joints in my body are aching as well. It’s called a flare. When one hurts, they all hurt. Before, I found that I was low on magnesium. Supplementing my magnesium helped immensely with the joint pain. Right now, I’m not so sure. It’s not working very well.

When this is done, I'm going to soak in a hot bath!

~~~~~~~~~

There are thing in my life that I would like to improve. I hope that you have similar goals. Many things I’m pretty good at, depending who you ask, but there is one thing in particular that I would like to improve.

I got some paperwork recently from one of my doctors. Included in with all the documents was a hand-written note. You have to understand; I’ve talked to this woman several times on the phone, three times or so in person, and have seen her husband twice.

But she touched my heart with her note. It was simple:

Dear Ben;

I hope this note finds you doing well. You are such
a strong person. I think about you a lot. God Bless You and look
after you.

You are in my thoughts!

This woman is going through similar issues to those I face. When I’ve seen her, she’s always been in good shape, while she’s has gotten to see me in a variety of conditions. When we’ve talked, I’ve always tried to pass on the things that I’ve found that helped me.

Now, knowing what I know, with one simple note, she brightened my day immensely.

Some day, I would hope to be able to touch people the same way that she has touched me, and made me feel much better.

Kunolunkwa, y te quiero!

Let's Just Pass...

2008-03-14T19:57:00.002-05:00

...on the blog tonight. I did have one thing go right today, and I'm amazed at the effort it took to get it done. You aren't going to believe what you have to do when dealing with insurance companies. Then again, maybe you will.

I've done more today than I've done in months, so I must be getting better. But now I'm tired, slightly fatigued, and slightly out of breath. I'm not really out of breath, but that's doctorspeak for what happens to me when I do overexert a bit.

So, I'm going to sit back, watch a couple of episodes of Jericho and talk to Ben when he gets home. Besides, I made two posts yesterday.

Kunolunkwa, y te quiero.

Let Me Say This About That

2008-03-13T22:05:00.002-05:00

If you haven’t read the other post for today, this might not make too much sense. If you have, as you can tell, I haven’t let it go yet.

Back in the early ‘70’s, a guy by the name of Robert J. Ringer wrote a book called Winning Through Intimidation. Now, it isn’t really about intimidating people, but rather how not to be intimidated.

But I read his book a long time ago. My paperback is pretty ratty-looking today. What impressed me the most, what I “took away” from the book was his Three Type Theory as illustrated by a card game. To quote from the book:

What this theory states is that there are only three types of people who exist
in the business world (again, with the one exception being a person who stands
to directly benefit as a result of your earning, and receiving, income), as
follows:

Type Number One:

This type lets you know from
the outset—either through his words or actions, or both—that he’s out to get all
of your chips. He then follows through by attempting to do just
that.

Type Number Two:

This type assures you that he’s
not interested in getting your chips, and he usually infers that he wants to see
you get everything “that’s coming to you.” He then follows through, just
like Type Number One, and attempts to grab all of your chips
anyway.

Type Number Three:

This type also assures you
that he’s not interested in getting any of your chips, but, unlike Type Number
Two, he sincerely means it. That, however, is where the difference ends;
due to any one of a number of reasons—ranging from his own bungling to his
personal standards for rationalizing what’s right and wrong—he, like Types
Number One and Two, still ends up trying to grab your chips.

Later in the book, I wasn’t able to find his quote, Ringer does say that there is a Type Number Four who says that he isn’t after your chips, and really means it, but the number of people like that are so small that they are statistically insignificant.

Having read this so many years ago, I am still amazed how often I forget this advice. But, it forms the basis for the fact that I am loath to accept any charity because it has the nasty habit of turning on you. As Heinlein pointed out, “There Ain’t No Such Thing As A Free Lunch!” (TANSTAAFL)

Months ago I was assured that an act of largesse on the part of someone was quite valid and that I wouldn’t have to worry—I even commented on it in a post here—only to have that act rescinded today, and now I’m back to having to worry.

I’d like to believe that it was a case of Type Number Three in action. I’d hate to think that it was a case of Type Number Two. But it is still small consolation. And I do take it personally.

But I guess I should be thankful. This frees me from any gratitude that I may have held toward this person and the people they represent.

You Wanna Talk Stress?

2008-03-13T20:15:00.002-05:00

OK, my stress level has jumped considerably. Between the hospital, work, and insurance companies (plural), they have really put the screws to me this week. I thought I was supposed to keep my stress level down? And silly me, I thought that they’d help.

I’d really like to be able to talk about what’s going on, but I’m going to have to keep things quiet for now. The kids are aware of what is going on. But I may need to get some professionals involved.

But think about it. The hospital knows that I’m a cancer patient. They should know that in order for me to get better, they would have to keep their dealings with me at a low stress level. NOT!

Amy took a job in Florida working with a BayCare hospital in Tampa. I’m assuming that it is “Tampa Bay Care.” She says they’re not the same company. And that they call their “patients” “customers!” Looks like I need to move.

I had to call another insurance company that pays my auto premium while I’m “disabled.” They sent me a letter in late February, telling me that I have ignored the forms they sent to me and that they were going to discontinue paying my premium. I called back and said that they never sent any forms to me, because I never received them. They said they’d send them right out, again!

You guessed it; I still haven’t received any forms. I called today to complain, again. They said “we’ll send out more forms, blah, blah, blah.” I told them to fax the forms to my Doctor. While they checked to see if they had his fax number, I jumped on the Internet, and had his number very quickly. So I gave them the number.

Then I called the doctor’s office to let them know what was going on. It was just a few minutes after 5:00PM and all I got a recorded message. I hung on to get an operator and asked for the office voice mail. She said I’d have to call back after 7:15AM. I explained the situation and said that I just wished to leave a message. “Call back in the morning.” Customer service?

How much do you want to bet that I’ll still have to leave a frickin’ voicemail in the morning? How much? Anybody out there with a little sporting blood in their veins? Or are you too used to being treated like a nuisance instead of a customer?

~~~~~~~~~

But enough about that, my stress level is getting too high, again.

I started my beard again. My hair, what little there is on the top of my head, OK on the side of my head, has been growing out. I actually had to trim a little around the ears today.

Since the stubble on my face seemed to be growing thicker, I figured that I’d give it a try and try to get back to my personal self-image.

~~~~~~~~~

Have I mentioned lately how much I love my kids and appreciate them? You’re letting me slide here folks.

I got a call from my daughter today to catch up on a few issues. When my kids were little, I never “gave” them the answers. I made them think about things for themselves. Sometimes I actually gave them bogus answers on many occasions, just to make them discount what they heard and think about the answer they were looking for.

My son took things in stride and simply looked for the proper answer. But my daughter…. She liked to confront me with my stupid answers while looking for the answer.

I mentioned today that the stressful situation on Monday, nearly “blapping” after four decades of avoiding that situation, made me realize that I was, after all was said and done, still a human. And that I had had such higher aspirations than that.

Boy did she let me have it. I haven’t laughed so hard in quite a while. She was laughing just as much. She certainly helped relieve some of my stress today.

~~~~~~~~~

After all that, I may be doing better physically. I hate to get my hopes too high right now. But, I missed a dose of pain meds today and didn’t really notice until it was almost time for my next dose. That’s always good.

Kunolunkwa, y te quireo!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Not Much To Tell

2008-03-12T20:54:00.002-05:00

I’ve had a low-grade fever today and have been feeling poorly. My feet are acting up again and even my stomach is feeling a bit sore.

I walked over to The Men’s Mall to get some screws to fix my end table that suffered the “casualties of the Holidays.” I still need to put the door back on.

I fixed more Tuna Helper, today. I had to toss two cans of tuna that I had in the cupboard. They were under pressure and even I know that’s not good. I’ll toss the rest later. And I still need to do the dishes.

~~~~~~~~~

I mentioned RateMyCop.com yesterday and how it appeared that they were already “off the air.” Well, they were. Their hosting company, GoDaddy, pulled their plug without even telling them apparently. RateMyCop then paid for another hosting company only to have them pull the plug as well.

See what happens when you want to hold the “po po” accountable for their actions?

BTW, that is the focus of the article at Nuremberg II. People have to be held accountable for their actions. They can’t get away with just saying, “My government made me do it.”

Kunolunkwa, y te quiero.

Rate A Cop!

2008-03-11T20:09:00.002-05:00

As a kind of follow up to my Thoughts on the Police post from February 17, I decided to post this information.

It seems there’s a website that’s getting a lot of flack from quite a few police departments and organizations. This article explains what’s going on. It seems someone has come up with a web site that allows you, the masters of this country to rate the service you get from your servants, the police. It seems that the police doesn’t want that to happen,

The site is RateMyCop.com. Now, it may just be a coincidence that when I went out to view the site, it was “currently unavailable.”

The reporter said that, “The First Amendment would be the site’s protection.” Well we already know how that’s going to turn out, now don’t we?

Meanwhile, back in Utah, the incident that had politicians calling for hiding any documentation of police misconduct from the public garnered the man that was tasered by the police officer $40K despite the fact that the cop was cleared of any wrongdoing.

~~~~~~~~~

You may have noticed that the archive section over there on the left has changed. I got a question, which I interpreted as a request, to make life easier to access the older posts. A new reader wanted to start at the beginning post and read all six months worth of belly-aching in order. But it was hard under the former system to do that. This system will allow for starting and stopping a little easier.

As a former QA guy, I try to take care of my customers! :-) But I don’t know if I’ll write the book that she wants….

I am wondering though, is there any reason why I should allow the search engines to crawl all over my blog? As we approach 2,000 views, not counting mine anymore, I get a lot of hits for things like curamin, hydrocodone, hunting stories, and all sorts of things. Just wondering.

~~~~~~~~~

Are the new hours of daylight bothering anybody else? For some reason, it really seems to throw me off. Then again, I don’t have a schedule to keep while the rest of you do. Sorry!

~~~~~~~~~

I slept in today until almost noon, got up, got dressed and went out to check the mail. While I was out, I drained the big puddle that was forming on the sidewalk, and removed some ice from the drive so the water could drain. Had I more energy, I would have removed all the ice, but I ended up in the back of the vehicle several times trying to catch my breath.

And my back needed some support. After I came in, I slept for an hour or two just to catch up. I really do like valerian root!

I apologize if I have given the wrong impression about what ails me. Sunni gave some great suggestions to help calm an upset tummy, but that isn’t really the issue.

There have been comments about my ability to watch the depictions of autopsies on TV while I eat my meals. I even continued to eat tonight while Himmy was “blapping” his cookies on one of the chairs in my office. He got down, wandered around for a while and is now in the other chair in the office! Who said cats are stupid?

That type of thing doesn’t bother me.

Remember back when I got started on the chemo and I commented on the “hiccups and palpitations?” What I’m experiencing now is just an extension of that, I believe. The Blob, my own personal tumor, is just at the top of the stomach. The cancer is in the lower esophageal wall, which also contains the muscles that control the lower esophageal sphincter. That is the area that was getting hit by the radiation up until two weeks ago tomorrow.

Like an open wound, the area can be very sensitive. Most of the time it does just fine, but there are times when if I don’t treat it right, it wants to let me know in no uncertain terms that I did something wrong. That’s what happened ‘that day that shall live in infamy;’ can it have just been yesterday?

Apparently, my timing with my pain meds and the ingestion of my meds in pill form wasn’t right. The pills irritated the Gastro-Esophageal Juncture and it tried to rid itself of the offending substances. It will be a long time before I forget that spasm of my stomach.

So, I take my pain meds first. A bit later I take my pill meds. I try to drink something, something warm preferably, for a while before taking any pills. Then I eat something soft. I hate to say it but the Tuna Helper seemed to work just fine and it actually tasted pretty good.

While I’m just a snorkeler, my son is into SCUBA diving. We usually run down to Florida and hit the water for some fun. I’ll paddle around on the surface while my son plays 40 feet below me! It was during one of these dives that I got to see my first baracuda —“Ba-ba , ra-ra, cu-cu, da-da!” You may have to be as old as I am to remember that little radio ditty—so thanks to him, I got to watch my first baracuda as it circled us from about 30 feet way.

Anyway, my daughter got her brother some dive magazine subscriptions for Christmas this past year. We read them at the kitchen table. There was recently an article about “mal de mer” otherwise known as seasickness. It was an interesting article although I have never experienced it. But it’s the kind of thing that someone going on any cruise needs to know, diving or otherwise.

Sunni recommended a sugared soft drink and ginger, as in ginger ale. Both were mentioned in the article. It’s kind of funny because I’m a big fan of non-alcoholic ginger beer. I think I got my son started on it as well. He likes the Jamaican style, while I like the more mellow style, like Stewarts’s Ginger Beer.

My problem is that ginger augments the effects of the rat poison I take. As a result of Monday’s tests, I have to reduce the amount of Warfarin that I’m taking for the next couple of weeks because my INR is too high, again. I was surprised at how much blood was on the gauze after they removed the needle from my port.

However, I have been drinking A&W Root Beer ever since I found out that candida albicans needed an alkaline environment to survive. And I was having a problem with thrush for a while early in my chemotherapy.

So, again, I apologize if my choice of words, or the way I represent my problems might cause some misunderstanding. I blame it on my chemobrain.

I was engaged in a “discussion” in another venue when my partner disagreed with my choice of words. He had a different connotation than the one I was using for the word I used.

To try and make my big point and not get hung up on hair-splitting connotations, I conceded the word choice and tried to continue to make my larger point. He then proceeded to make a big deal out of my “error” in words and started to make fun of my error. And this is from a guy who knows about my “condition.” Imagine what someone who doesn't know would do to me!

So, I guess I’ll have to restrict my discussions to my blog where everyone knows that my brain is fried right now, but I’m hoping that it will start functioning again after all the toxic chemo and radiation effects have been chelated from my body.

But, again, I apologize if I sometimes might not make sense, or don’t use the right word, or give a false impression.

Four pages! For someone who can’t communicate his thoughts well, someone who can’t pick the right words, I guess I try to make up for it in volume. ;-)

Kunolunkwa, y te quireo!

What A Day—Now I’m Pregnant?

2008-03-10T21:04:00.002-05:00

It started out just like any other day. But it’s a day I will long remember.

Today was supposed to be my lab work and consult with the doctor of the day starting about 10:00AM. I got up and took my meds. It’s amazing how just taking medication can cause someone to not feel well. My mouth was tasting of metal again, like it is right now.

I stopped to get some cash so I could stop and get some biscuits and gravy from Wendy’s so I could tell if the other day was just a fluke. Since I wasn’t feeling well, I decided to pass on consuming the B&G and they ended up in my fridge.

I had my port accessed, to keep it cleaned out, for my blood tests, told my tale of woe to the nurse, and waited for the doctor. He came in and I explained my problems to him as well. “It’s your stomach,” was about all he said.

My back pain is from the radiation treatment. My stomach is responding to even more mistreatment than the back received. Even my abdominal muscles are sore, I found out, and that is supposed to be from the stomach somehow as well.

Anyway, I will have a PET Scan done of Friday, March 21, 2008 with a follow-up lab tests and consult on Monday, March 24, 2008 to give me the results of the tests and to tell me what they want to do.

I stopped to get some groceries, some Tuna Helper and the like. It’s good that I didn’t remember the BLT and egg sandwich I lusted after on the movie Spanglish. I probably wouldn’t be able to eat it. I can’t tell you the amount of food that I’ve purchased only to throw away because I wasn’t able to stomach it. “Stomach it,” get it?

I got home wanting to get a bunch of stuff done only to be weakened by the morning’s efforts so I ended up taking a nap, which is again unusual for me at this point. I am amazed how my stomach can affect my brain. I get confused so easily when I have the stomach pain.

Now you’re probably wondering what the reference of pregnancy in the title has to do with anything. In my post Long, Long Ago… I mentioned that vomiting, or “blapping” as Sunni called it, is against my religion, which is why I never want to become pregnant.

As mentioned in that post, I twice had started looking for something to “blap” into, but never really got that far. Today, this morning after taking my meds, I got that far. There wasn’t anything in the stomach to “blap” except for the meds and the little bit of water I needed to take them. And my jaw muscles are pretty strong, all the talking I do, so nothing actually came up. But the stomach contracted and tried very hard to get rid of whatever triggered it. Had I had very much in my stomach at all, it could have come out very easily.

So, now I’m wondering if I’m going to experience “morning sickness” every morning or what. As I said before, I am extremely grateful that I haven’t had any, make that ANY, nausea or vomiting, until now. But it looks like that honeymoon is over.

So, I didn’t get anything that I wanted to get done today at all. I’m hoping tht tomorrow will be different. I’ll try to jolly my stomach along before taking my meds to see if I can offset the sensitivity of my stomach.

Kunolunkwa, y te quiero.

Nuremberg II

Happy Birthday, Oscar

2008-03-09T19:54:00.002-05:00

Along about 4:30AM I got up to visit the little boy’s room. I found Mousebane outside my door and he was very glad to see me. Being in a middle-of-the-night stupor, I continued into the bathroom and looked around. Sometime earlier, the sound of a “bump” had made its way into my consciousness despite sleep and my white noise generator (WNG). It had sounded like something had tipped over in the bathroom, but I found nothing improper in there.

When I left the bathroom Mousebane was right up against the door, still very happy to see me again although he ran off down the hall. Being the good morning-zombie that I am, I followed. I discovered the door to the kitchen closed.

When Ben uses the oven the smoke alarm outside the bedrooms can go off for no apparent reason. Rather than pull the battery, we just close the door.

Well it seems that Mouse got stuck on the wrong side of the door. His water is in the kitchen and basement; his food and cat box are in the basement, out the other door in the kitchen.

He took off down the stairs without even saying, “Thanks!”

~~~~~~~~~

I see we changed back to regular time. I was checking to see when my email to my former neighbor finally got sent only to find that it left my outbox one hour into my future. So I had to stop and find out how that had happened. Since my cell phone along with my computer said I was living one hour in the past, I guessed that the government had changed time again. At least now when I go out to capture some midday sun, it truly will be midday!

See, even the government can be right once a year.

~~~~~~~~~

After careful consideration, I realized that since I hardly throw anything away, I must have fixed the brush for my vacuum cleaner at some point in the past. So downstairs I went and found two, count ‘em two, used brushes. It seems that long hair plays havoc on the brushes! Not mine, BTW!! LOL!!!!

So, I pulled the bad bearing from the most recent brush and substituted one from one of the old brushes after being rebuilt by yours truly. Put it in the vacuum and lo and behold, it worked! So, sometime tomorrow I hope to get the house vacuumed.

~~~~~~~~~

Of course that all depends on my VLCC visit tomorrow at 10:00AM. I’m only supposed to have blood work and a consult with Dr. “Himmy” but we all know how that has turned out before.

I’m hoping to find out what we are going to be doing in the near future.

~~~~~~~~~

So have you figured out what I mean when I link to Nuremberg II yet?

Kunolunkwa, y te quiero!

Variations On A Theme

2008-03-08T20:34:00.002-06:00

I tried most of the day to put into words what I wanted to say, but found that I couldn’t say too much without giving too much information away. Too many folks would figure it who I was talking about, even with a bunch of hypothetical situations, therefore I can’t post anything about it. So I guess I can't tell you what's troubling me.

~~~~~~~~~

I talked with Ben for a while last night and then headed off to bed. As I was brushing my teeth, I put my hand on my back, kinda where it hurts, and tried to stretch. You’ve all seen the gesture. Pregnant women do it all the time with both hands when they’re trying to ease their aching back.

Watching in the mirror I realized that my hand, my pain, was on the same level as my tumor. That’s when it hit me; my sore back is due to the radiation therapy. They hit me from three different directions to minimize the damage to the general area while concentrating as much radiation on the tumor as they could. But the radiation that went straight in passed through my back, and the right side site was pretty much in the back too.

Now I know why my back has been bothering me. If I weren’t so damn observant, I’d just think that I was still fatigued and the lack of exercise was taking its toll.

~~~~~~~~~

As I mentioned before, my Valerian Root is working pretty well. I was up this AM by 7:00-7:30. So, I got up, took my pain meds, started my succession of pills, and jumped on the computer. That was when I heard the knocking at the door. One of my friends from work stopped by to see how I was doing. He’d stopped by several times before and knocked softly but never got a response because Ben was sleeping, and I was probably sleeping with my white noise generator blocking out the extraneous sounds, like light knocking at the door, like it’s supposed to do.

So we had a good talk. He’s working over 60 hours a week and I find that we’re having a lot of new faces show up. And it was he, as I suspected, that left the package of stuff at the back door. He said he figured the book Reservation Road would have been the give-away.

He wanted to take me to breakfast but I had to explain that right now, I’m not normal. But then you knew that already. Until my taste buds and nerves and things get back to being a little more predictable, I can’t treat myself like other people can. But I did explain that and my gratitude for his invitation and how much I hated to have to pass on it. The Ensure did nothing to make me feel any better after he left, either.

~~~~~~~~~

I was feeling rather ambitious today so I dug out the vacuum cleaner. If I’m going to have guests, I want the house looking a little cleaner. I moved a bunch of things out of the living room to make way for a good vacuuming and got started. It was then that I noticed that my vacuum wasn’t picking up very well at all. Investigation proved that a bearing in my brush wasn’t working. My belt was actually smoking!

Well, here was a good opportunity to get a little exercise, so I walked over to the Men’s Mall to pick up a brush assembly. Nothing! No brushes at all! Oh, they had belts and filters, but no brushes. This should be the place that had brushes if anybody should.

So I walked home. Just that bit of effort wiped me out. My back started complaining all over again. It was then that I also realized that I had missed my afternoon pain meds. So I guess I’ll wait to drive somewhere until tomorrow.

I am feeling less fatigued in general, but doing too much can sure tucker me out.

BTW, my fatigue controls a lot of what I can and cannot do. I don’t wish to give the impression that I don’t care about what goes on around me. I care! It’s just that there isn’t a whole lot I can do about it, feeling as fatigued as I have. And, since I have been feeling less fatigued, my anticipation of finally getting something done is increasing by leaps and bounds. It’s kinda like that old joke, “Lord, please give me patience, and I want it NOW!”

~~~~~~~~~

I got an email from an old neighbor today. I shouldn’t call her an old neighbor, since she is younger than I. But she is the neighbor that lived next to me on South Oakland Ave. She finally got into some SSDI housing, she is disabled, and wanted to let me know the changes. Ben goes right by her new place on his way to work.

I replied to her email, but my ISP won’t let the email go out. I’m not even sure if I am getting all my incoming email. I’ve emailed them about the problem before but they couldn’t do anything. It has cleared itself up all by itself last time. I guess I’ll just have to wait and see.

All my other accounts are working.

~~~~~~~~~

I’m starting to lose my Spanish. I watched Spanglish yesterday and could barely understand the spoken Spanish. Nececito practicar!!!

But you gotta admit that Paz Vega is cute, in any language!

~~~~~~~~~

I’m starting to fade fast, so I think I’ll take my pain meds and my pills, and try to relax. I may not make it until Ben comes home tonight. But he’s off tomorrow, so we’ll have a chance to talk.

I wish a Wendy’s were closer. I’d like to see if that biscuit and gravy was just a fluke since mine didn’t turn out so well.

Kunolunkwa, y te quiero.

Nuremberg II

Getting Better?

2008-03-07T19:46:00.001-06:00

Sometimes I wonder. My post yesterday resulted in a couple of comments that said that I’m sounding better. I just wished that I felt better.

My peripheral neuropathy has been acting up today. I can understand now why doctors sometimes prescribe painkillers for the condition. I don’t think that there really is pain; it just feels that way. Does that make sense?

Rather than being stimulated by normal factors like pressure, heat, or shock that cause the nerves to report “pain” to the brain, the anti-cancer chemicals have actually changed the receptors causing them to falsely report the phantom pain.

Now, I don’t know if what I’m feeling is normal or what it means. I’ll ask on Monday. I’m hoping that it means that my tortured nerves are recovering from the abuse, and are just letting me know about it. It’s like the pain and tingling after your hand or foot has “gone to sleep” and starts “waking up.” Only more intense.

And this is with me taking my pain meds.

I may be feeling better anyway. I’ve done a couple of things today to “change my environment” which is always a good sign. I’m taking more of an interest in the things around me again. That’s the first step. Now, actually doing something about it will be a better indication that I’m getting better.

I am concerned that I’m having a problem with motivation and execution. I know that there are things that I have to do, but for whatever reason, I’m having trouble getting motivated enough to get some of them done. Is this a response to the chemo, like my chemo brain, or is it just my lazy ass not wanting to get up and do things? Enquiring minds want to know!

I’m also down in the dumps over a “people” issue. I’ve been wondering all day how to present it here without “tattling” and I finally figured out how. But I don’t have time to go into it tonight. So maybe I’ll spend the time tomorrow to document the situation and present it here.

Just remember, Kunolunkwa, y te quiero!

Did you check out NUREMBERG II yet? It has applications to my people problem.

One Small Step

2008-03-06T20:01:00.002-06:00

As you know, I switched from my OTC sleep meds to something more natural, Valerian Root, for help in sleeping. One thing I’ve always liked has been the fact that I can easily overcome the effects of the valerian root to wake up if I need to. Sometimes, with OTC and prescription meds, that’s difficult to do. Unfortunately, that will take some getting used to.

I awoke this AM at 3:00, trudged off to the little boy’s room, and went back to bed. Unfortunately, I didn’t get back to sleep until 4:00AM with the alarm set for 6:00!! So, I was kinda tired today.

I got up and showered for my appointment at work to have my blood drawn for our new “wellness program.” It took less time than I thought to get ready, so I trundled off to one of the stores that was open that early to pick up a few things I needed, including more Ensure.

Now, I didn’t walk all that far, but it sure tired me out. And the cold weather didn’t help.

I made it to work—now there’s something strange to say—almost ½ hour early. I figured that I’d sit somewhere until my appointment time, but they were able to get me started right away.

BTW, let’s talk politics for a little bit.

[rant on] I had to fill out a questionnaire for someone, insurance company, hospital wellness program, someone! Without it, I couldn’t get my blood drawn. There were questions that I didn’t answer or answered the way I wanted, not according to the reality of the situation.

I don’t know if you’ve noticed but the “health” professionals are getting pretty inquisitive about things that are none of their business. Couple that with the fact that the doctor/patient confidentiality is long a thing of the past, and you have a possibility of giving up your rights.

You have the right, confirmed by the Bill of Rights, to not incriminate yourself. But if you tell your doctor something that the government has made a crime, and your doctor tells the government, you could go to jail!

Take for example the Second Amendment, you have the right to keep and bear arms with no governmental infringement. The whole purpose of the Second Amendment was to protect your right to defend yourself from the government!

So the government says that people who are depressed, or who have been depressed, are a danger to themselves and to others so they can be denied their right to keep and carry. Remember the lady in Ohio who was strip searched by male and female officers because she answered the question if she were depressed, “You mean now or sometime in the past?”

The government is trying to apply the fact that our returning soldiers may have had episodes of depression to deny them their right to KABA (keep and bear arms).

So, a seemingly innocuous question on a “wellness” questionnaire asking if you are or ever have been depressed can have far-reaching implications. “So tell me, Ben, did you or did you not say on the Bellin Wellness questionnaire you filled out on March 6, 2008 say that you had been depressed? See, your Honor, Mr. Ben admits that he had been depressed, off with his head! I mean, take his weapons away.”

PAY ATTENTION! [rant off]

It was interesting because no one seemed to recognize me. Guys that I’ve worked with for years wouldn’t even look at me. I’d say “hi” and the most I got in return was a “hi?” I can’t blame them, though. I don’t look anything like they last saw me.

I did have one woman say “hi” to me who sounded like she knew me, but I didn’t even know her!!

Even the HR person, Barb, had to ask if I were there and had the vampires, I mean the phlebotomists, point me out. :-)

I didn’t have to do any exercises, though. I wouldn’t have been able to. The whole getting weighed, measured, and drained of blood—BTW that was the most painful antecubital venipuncture that I’ve ever had—was tiring enough all by itself. I was going to stop at another store, but decided it would have to wait for another day.

On the way home, since I was so close, I stopped at a Wendy’s for breakfast. They’ve started serving breakfast while I’ve been sick so I thought I’d try their biscuits and gravy (B&G). I’ve told you before about my search for good B&G. I think I’ve found a good fast food version.

I took it home, but didn’t get around to eating it right away. I’d had an Ensure before I left work—boy does that sound strange—so I wasn’t terribly hungry. Even after heating it in the microwave, it still tasted pretty good. I would recommend that you try it if you like B&G. Now they need to put up a Wendy’s closer to me.

Maybe my taste buds are coming back, I hope, I hope, I hope!!

So here I was, at home and feeling really whipped, so I put my groceries away and headed off to bed just to rest.

My son recently got me started watching TV programs on line. I get to watch episodes of NCIS that haven’t made it to DVD yet. When I ran out of them I tried the CSI series, the original, Miami, and New York. They are mildly interesting. It’s interesting how they treat the same subject on different shows. Miami is pretty much a farce, all flash, not much to think about. Las Vegas is a little better, while New York is the best of the bunch.

After I ran out of those episodes, I started to watch Jericho from the very first episode. Now this is an interesting show. I’m waiting to see how it progresses.

Anyway, I watched “TV” until Ben got up, got ready for and left for work. I watched maybe one more episode and decided to try a nap. I needed it. It was then that the phone rang.

One of my favorite nurses, Nurse Diane, the recent transfer from medical oncology to radiation oncology gave me a call to see how I was doing. After our conversation she told me to keep in touch. She is one of the nurses who cares about the person and not just the patient. I like her.

Thinking about it, she reminds me of my grandmother who died at the ripe old age of 58 back in ’62. At least as much as a boy of 11 can remember his grandma. Nurse Diane fits the body type but doesn’t have the mustache. And is just a few years younger than I, according to her.

So I took the computer out to the recliner and figured that I’d watch some more to stay awake, then go to bed early. Himmy jumped up on the chair on the other side of the end table, walked across all the remotes lying on the tabletop, and plopped himself down between me and the computer. I mentioned that this is a laptop computer, right? I don’t have that much lap! But we worked it out.

I took a small step today that I mentioned in the title. I moved the computer out of the bedroom and reinstalled it back in my “office” after my stint riding the recliner. No more waking up early and jumping on the computer right away without even hitting the head. If I want to play on the computer, I have to get up, get dressed somewhat, and sit in a straight up chair. No more lying in bed and playing on the Internet. Bed is for sleeping.

So, it’s interesting getting used to my ergonomic keyboard again after learning to type on my flat laptop keyboard. And the keys are in different places. No wonder I had such problems typing on the laptop.

And right now, I’m listening to my music on a good set of external speakers.

But I’ll clear all the paperwork and stuff out of the bedroom and turn it back into just a bedroom. Then I need to clean up the “office” and get it livable.

Kunolunkwa, y te quiero!

Here’s a new link for you, NUREMBERG II.

It’s A Beautiful Day In The Neighborhood…

2008-03-05T20:18:00.002-06:00

…or at least it should be.

I don’t have a lot to say tonight. I’m going to bed early so I can get up early to get some blood work drawn AT WORK! I’m so excited. Not! Chances are they’re going to ask me to do some exercises from the looks of the paperwork. What is the smiley for raucous laughter? Do they even have one? They’ll be lucky when I get out of their chair.

BTW, I was out today paying bills and picking up a few things. Figured I’d stop at Fazoli’s for their Italian Beef Submarino. First, if there was anything in that sandwich other than the meat and the provolone cheese, I didn’t see it. It should have had onions and peppers. Note the use of the word ‘should.’

Second, they must have gotten their beef from wild cows or something. It contained quite a bit of connective tissue. It was the worst piece of meat that I have had in decades. It worked out quite well for my new chewing routine, though. I would take a bite, chew until all the bread, cheese, and chewable meat was gone, and then spit out this wad of connective tissue. Now, I wasn’t taking big bites but one wad was almost the size of the first joint of my little finger. Nope, not going back for more.

It was the first time I had eaten almost an entire store-bought sandwich in quite a while, but it took me almost an entire movie to do so. I was watching Donnie Darko on my son’s recommendation—pretty good flic, I hadn’t seen it before—so it took at least an hour or more. I suppose the extra chewing had something to do with it, too.

The pain is slowly going away, but can return with astonishing speed. I took my meds when I got up, but without the pain, I sometimes forget to take my pain meds. Like today! But with the sandwich and the big honkin’ pills I take, my stomach can get testy real quick. It’s only been a week since the last assault on my stomach. So, I may be doin’ OK, or I may not. No previous experience to be able to tell.

I asked Ben last night if he thought I was doing better or not. I’m too close to the problem so it’s sometimes hard to tell. And my memory can be rather short on some things. He tells he thinks I’m doing better, so that was good to hear.

It looks like I had more to say than I thought I did. See what happens when you get me talking?

I hope that y’all are doing OK and that things are going well for you. And remember: kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Happy Six Month Anniversary!

2008-03-04T21:32:00.002-06:00

Well, it’s been six months today that I’ve been “disabled.” The insurance company that covers my car payments is looking to cut me loose. They sent forms that, conveniently, never got to me. So, they’ll now send me more forms.

The alternate title to this post was going to be The Times They Are A-Changin’. Things are changing for me, and not necessarily for the better but it’s hard to tell.

My peripheral neuropathy is acting up. I’m hoping that it is reducing, in that I’m getting feeling back into my feet and hands. But it feels strange, and different.

My right ankle and left hip joints are starting to cause me the same pain that got me kicked of the PC and told to take aspirin! I’m hoping that it is just due to the lack of magnesium. I haven’t been taking my supplements as religiously as I should. I sometimes forget. And if you aren’t already supplementing with magnesium, you’d better!

My mouth has a metallic taste to it. I’m hoping that it’s like the neuropathy and an indication that things are getting better. Come on taste buds!!

I stopped shaving the little head hair that I have and started letting it grow. So I have this white peach fuzz where I used to have hair before. I’ll let it grow for a while before making a decision about it. I’m still shaving my face until I have more whiskers show up. The mustache feels like it might be thick enough but the rest is still rather scant.

And my cough is still with me. My assumption is that it is still the same cough that one of my blood pressure meds causes, but it can get annoying sometimes.

I finally started taking some of my herbal supplements. I took valerian root instead of the sleeping meds last night and did pretty well. If I take my passionflower maybe my mood will lighten up a little, too. :-) I haven’t jumped into taking everything all at once. I’m working back into my routine slowly.

I stopped by the health food store and picked up a gentle detox cleanse product. I need to get rid of all the toxins that the chemo and radiation have released in my body. Of course it would help if I drank more water, too.

While I was out yesterday, I hit three stores. By the time I got home, my back was feeling sore and I was starting to curl up into a ball, it seemed. Don’t know what that was about. But I noticed it here at home today as well. I’m wondering if I need more exercise.

Thursday I have to go in and have my blood tested at work. They’ve gone with yet another healthcare provider to help us stop our evil ways and nasty habits. For some reason, the folks in Sheboygan didn’t work out, so now they’ll try some folks here in Green Bay. I told the HR rep that my blood is going to be off the charts for a normal person, but should be fairly normal for what I’m going through. Still gotta do it or lose my insurance. What can I say?

Well, I think that’s all for now. There is still some paperwork that I want to try to get done tonight.

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

The Best Laid Schemes Of Mice And Men Gang Aft Agley

2008-03-01T21:58:00.003-06:00

But Mousie, thou art no thy lane,
In proving foresight may be vain:
The best laid schemes o' mice an' men
Gang aft agley,
An' lea'e us nought but grief an' pain,
For promis'd joy!

From Robert Burns’ ode, To a Mouse.

You ever remember some of that stuff you learned in government school; sometimes when you least expect it?

I was planning on doing some housework today. I slept in until noon! I got up to take my meds and get some sustenance and spent the day riding the recliner.

I wish my doctors would talk to me about what it is that I should be doing to bring myself up-to-speed, but all they can do apparently is to make me sick. They can’t be bothered to help me get better.

So I spent the day wondering about my low-grade fever, the hot flashes and then the chills, and the dizziness I experienced almost every time I got up. I checked my blood pressure and it was fine for me, but my pulse rate was 105. I know that 60-100 is normal for normal adults but it is still somewhat fast for me.

My assumption is that as I recover from the ritualistic poisoning of my body in hopes of killing my illness I will be experiencing situations that are outside my normal experience.

Like my peripheral neuropathy, my feet are feeling more like normal, i.e. they feel like they were cold for some time and have just started to warm up. They still have the “pain” sensation, just not as bad as before. But my hands have increased the “pain” sensation. The two small fingers of my left hand are feeling numb. When I tried to talk to someone about this before, I fond that it strikes everyone differently, and therefore, the medical community can’t tell me anything that can help.

~~~~~~~~~

I miss not being able to talk to my radiation technicians. I ran across something by Neil Young that I wanted to tell RT Amy, the younger, when I realized that I may not even see her again. We had talked about music, especially CSNY. I was surprised that someone so young would listening to music that I liked.

I had checked my iPod and didn’t find any CSN or Y. And yet I have such vivid memories of listening to Neil Young’s work. And I’m not just talking about his duet with Emmylou Harris. So, checking my Windows Media Player I found that I do have at least one of his albums, I mean CDs, transferred to computer. Now I need to figure out why it hasn’t gotten to my iPod. That means I have to create a library of all my music and where it is stored. More work.

I was going to listen to some Santana the other day and found out that he didn’t even make my computer at all!

I’m losing it. Or so it would seem anyway.

Please remember, this is my diary as well. I put things here to help me remember things at a later date.

Let me leave you with the words of Emmylou Harris:

Soul mate
The blues are deceiving
It keeps us believing
We're on the wrong road
One side is just like the other
Except for the color
And size of the load
And just how much it shows

But you're supposed to be feeling good now
Cause everybody said you would
Honey, does it blow your mind
That the prophets would lie
You're supposed to be in your prime now
Not supposed to be wasting your time
Feeling like you're down and out
Over someone like me

Kunolunkwa, y te quiero

Babies Faces 'Make Us Want To Care For Them'

2008-02-29T22:09:00.002-06:00

At least it works that way for me. I ran across an article today that states:

Dr Kringelbach said: "We found a very specific, rapid signature of the activity in the medial orbitofrontal cortex in response to infant faces.

"This provides evidence in humans of a potential brain basis for the 'innate releasing mechanism' described by Lorenz for affection and nurturing of young infants.

"Although the degree to which these responses are innate rather than learnt is unknown, these specific responses to unfamiliar infant faces… occur so quickly that they are almost certainly quicker than anything under conscious control."

The medial orbitofrontal cortex is at the front of the brain, just above the eyeballs, and is known to be important in regulating emotions.

Mine must work in overtime as much as I like kids. So there is a valid reason for my response to children and babies. Now you know why I like seeing baby pictures.

~~~~~~~~~

I’m at a loss; I don’t know what to do. There should come a time when I need to get off my sick, or lazy, butt and DO SOMETHING. I just don’t know if I know when that is just yet. One the one hand, I need to husband my strength to heal my body. On the other hand, I will need to get up and exercise to develop my muscles to build my strength.

I don’t know if I know when that will be. Since I still have pain upon eating, I’m letting things slide for a while. But maybe I’ll start cleaning house this weekend.

~~~~~~~~~

BTW, that was my hand in the video yesterday. Did you see how white it was? I almost had to turn off the lights in the room it was so white. :-)

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

That’s Strange!

2008-02-28T19:39:00.003-06:00

Staying home, that is. It’s not usual for me to not be anticipating getting up. So maybe that’s why I had so many dreams.

But Ben had to get up early to play at the DMV. With my white noise generator going I barely heard him leave or get back home. So I slept until almost 11:00AM or thereabouts.

I’m still having pain associated with eating, but I’m expecting that to go away in the near future as I heal.

~~~~~~~~~

I had mentioned that my daughter had sent a present along with the belated St. Valentine’s Day Hershey’s Kisses. I am including a video of her gift to me. Some of you may recognize it and the tune.

This will be my first attempt to include video in my blog, so I hope it works out well.

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

I GOT HUGGED!

2008-02-27T18:40:00.002-06:00

I don’t normally kiss and tell, but today was kind of unusual for me.

They say that mixed emotions consist of watching your mother-in-law drive your new car over a cliff. Although I am happy to be leaving radiation therapy behind me, I am sad that I won’t be seeing the radiation technicians any more.

Two of the RTs, Paula, and Amy, the younger, presented me with a certificate on the occasion of my last treatment today. OK, it was a little corny but I didn’t mind. Besides, it appealed to my emotional side today, since we are in the sign of Pisces right now. But then they both gave me hugs. Totally unexpected! But very sweet, none-the-less. I will miss talking to them.

When we did talk, I wasn’t always up to my normal witty banter, what with the cancer and the side effects of the cancer and all. But they did their job well, worked well together, and most of the time they were cheerful. Hey, they’re human too!

“Research shows that the female brain naturally releases oxytocin after a 20-second hug.” OK, so there wasn’t any oxytocin released, but it did make my day, heck my week, brighter. And it needed brightening.

I’m still sleepy-tired, but not as physically fatigued as I was. I was able to walk to Kwik Trip today to get some ice cream. If only I could eat, I think I’d start to build up my strength. I had forgotten about ice cream being my “best friend” according to one of the oncologists. Why the ice cream?

I stopped after radiation to get some Chinese food, but could barely eat it. It hurt going through the Lower Esophageal Sphincter. And I had had my pain meds earlier. But I have been expecting it. So I thought I’d try the ice cream and see how that works for me.

The diarrhea and the gas have slowed down considerably, although I needed my white noise generator last night to keep me from waking up everytime I “rumbled.” But today has been pretty good.

But I get to sleep in the rest of the week. And I can use my sleep to heal! And don’t forget my supplements! I don’t have a doctor telling me I can’t have them now!

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

One To Go!

2008-02-26T21:25:00.001-06:00

Ordinarily, I’d be a lot more cheerful about only having one more day of radiation therapy. But I don’t feel so cheerful right now. I was up and down all last night just trying to get rid of the gas. Which meant that I didn’t sleep as well as I would have liked. So I slept in until 11:00AM or so.

After Ben left for work, I laid back down. The pain meds adds another dimension to the “sleepy” side effect.

I got up, showered for my 5:00PM radiation appointment, and ran off to do that. I came home and just “sat” for a while. I can’t tell you how many Sudoku puzzles I have done today.

It seems like my body is so used to the chemotherapy now that it is responding just as if I’d had chemo on Monday. I have the diarrhea that just won’t quit. I have intestinal gas that gives new meaning to “Blow it out your ***!” If it builds up on the topside, I have to sit up or stand to get rid of the gas and the pain. If it builds up on the other end, I have to be very careful!

So why now? I’ll have to call in tomorrow to ask the nurses since the meds I’m currently using don’t seem to work. And the supplements that I have taken before to reduce the gas don’t seem to working, either.

I don’t feel much like eating and the liquids I take to keep hydrated add nothing but ammunition to my system.

I’ve been trying to read, but can’t seem to keep my mind focused. That means I didn’t get to any of my emails today either. Sorry. Maybe tomorrow will be a better day.

As I’ve said, chemotherapy is nothing more than a battle of competing side effects. Usually they balance out. Sometimes they don’t. But there is a reason that the epidemiological studies give mortality figures for 30 days AFTER the last treatment.

I just reread this; I hope that it makes sense. I stopped before leaving the VLCC to sit in the waiting room after radiation treatment. I was anticipating that my stomach was going to act up like yesterday with the hiccup/ palpitations. I explained to the receptionist and the office manager (I believe) that I just wanted to sit awhile before I went out to my car. I was heartened that the OM enquired if I was driving and what it was that I was feeling. I appreciated the concern over me driving myself while I was impaired. But I explained that I was fine in that regard; it was just that my stomach sometimes gave me fits.

Kunolunkwa, y te quiero!

Good News / Bad News

2008-02-25T22:06:00.002-06:00

I have some good news and I have some bad news tonight. Which do you want first? OK.

The good news: I didn’t have chemotherapy today.

More Good News: I don’t have Radiation until 5:00PM tomorrow, so I can sleep in, after getting up to belch and take more pain meds.

Wait! No more radiation after Wednesday! That’s good news as well.

Now the bad news: No chemo means that my blood tests weren’t good enough to support adding more chemicals to my body. Didn’t I bring this up before, 3 on and 1 off? Looks like 4 on and 2 off doesn’t work for some of us.

More bad news: The pain is getting worse. I left Radiation today and started out to my vehicle. My stomach started doing flip-flops; kind of a cross between hiccups and palpitations. I went back inside to wait for the stomach to subside. It finally did, but it still hurt. Dying muscle cells still trying to function don’t feel real nice.

More bad news: I don’t know if my body is now trained by the chemo I’ve been getting, but my diarrhea started today, along with the gas. I’m going to wake myself up tonight just from the rumbling NOISE!!!! And I’m not even kidding.

The buildup of gas in my stomach, which I can’t get rid of while lying in bed, causes the GE Juncture to hurt. So I’m taking a full dose of pain meds at night. But I’m willing to bet I’ll be hurting by morning.

More bad news, possibly: The doctor told me I wouldn’t have any more radiation after Wednesday or chemo at all, unless we decide to do something after more imagery which is actually good. But, the nurse has me set up for chemo in two weeks. I wonder if someone isn’t getting the message. Probably me, I should know that by now. :-(

BTW, I’m down to the last three personal emails in my inbox. I’m hoping to get to them tomorrow! Then I’ll be caught up. With me feeling somewhat better I hope to do a better job in the future.

I was more cheerful this past weekend, less fatigued (I may even start cleaning my house soon), but I’m still tired/sleepy. I take that as a good sign. Kids grow while sleeping; I’m hoping that adults heal while sleeping. My body, trying to replace the needed blood cells takes the energy right out of my body!

Kunolunwa, y te quiero!

You guys know all about jury nullification by now, right?

What To Say…

2008-02-24T21:10:00.002-06:00

….what to say. You know there are times when I just don’t have a lot to say.

For whatever reason, I woke up at 4:00AM on Saturday morning. Wide Awake! So I jumped on the computer while I was thinking clearly and tried to clear up my backlog of emails. Did get a pretty good amount done.

I don’t know why I have a system of First In, Last Out. I don’t know how it got started, but there you have it. If you have emailed me, and I haven’t responded that might be a reason why.

I have quite a few emails (20) in my inbox going back to 2006 (1) of articles that I want to read. But since they require my full attention and my full capacity to understand—most are from Mises.org—I don’t always have the ability for both. Especially with chemobrain lurking over my shoulder. If I put them somewhere to clear out my inbox, I’ll forget about them like I forgot about the 36 items in my Follow up Folder that have already been archived!!

At some point yesterday morning, I pooped out and went back to sleep. I think I got up long enough to let Ben know I was still alive, to see him off to work, then I went back to sleep. So I got a bunch of sleep in yesterday.

I slept in today as well. At least I wasn’t awake at 4AM!

~~~~~~~~~

Got a call today from Nancy. She and her daughters, Shelly and Dee, stopped by to see me around noon. We looked at wedding pictures I took at Tim’s wedding last year. It was kinda fun to have some folks around who weren’t afraid to speak their mind. Family!

BTW, I loaned my Dumbing Us Down by JT Gatto to Shelly. She’s a schoolteacher and we’ve discussed Gatto’s work before. When she’s done, I have his The Underground History of American Education for her to read as well. You can read it online by clicking on the link.

Meanwhile, Dee brought me a book on the Oneidas and how they fared between 1860 and 1920. I’m already seeing red reading about the governmental acculturation of the Indian kids. And the government isn’t doing this to our own kids still? Check this toy out!

~~~~~~~~~

After Ben got up, we ordered pizza. This is the longest it’s been in a while since I had chemo--almost two weeks--so I was waiting to see how the pizza tasted. What a waste of time! While it’s not the “Kleenex tissue” taste, the taste just wasn’t there. I had the honey mustard dip for the chicken strips. I could taste the sweet, but the mustard just didn’t come through at all.

I tried some Kung Pao Chicken the other day. It is funny that my stomach didn’t react to the spice, but my mouth felt pretty warm. That’s not usually how it works. My mouth wouldn’t normally feel too terribly warm due to Kung Pao Chicken. And my stomach has never been bothered by spice. So there are some side effects affecting my mouth in addition to lack of taste. But it’s strange that it hasn’t affected my sense of smell, I don’t think. Those are neurons too.

I need to be back on my pain meds just to eat. I had to get up from the table today, take my pain meds, and wait for them to kick in before I finished my piece of 6-Cheese pizza. Now, it’s understandable. They are killing cells at the gastro-esophageal juncture where all the food passes through before hitting the stomach. So if the tissue there is in any pain or irritated at all, my pushing food by that point is going to have some negative impact.

But I think I might end up on a soft food or liquid diet here real soon. But after Wednesday, I’m off Radiation and Chemo!!! Yeah!!

Kunolunkwa, y te quiero.

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

I Don’t Feel So Bad

2008-02-22T21:00:00.002-06:00

I felt pretty good this morning, actually. I don’t usually get as verbose as I did unless I’m feeling good. I still had the fatigue, but I wasn’t as tired, and my mood was pretty good as well.

I went to radiation therapy and breezed right through it. I had to stop at Shopko to get a prescription refilled. Usually I get everything on the same schedule, so I can get them refilled all at once. It’s going to be a long while before I can do that again.

The consult was kinda funny. The pharmacist came over, looked at the prescription, started to ask if I had any questions, when she looked up into my face. Then she says, “Oh, I see it’s a refill.” Why is it that no eyebrows thing gives it away almost every time?

~~~~~~~~~

A couple of weeks ago, Ben and I were in the kitchen when I happened to actually look at my fingernails. There were four strange ridges going across the nail. It looked like a corduroy road, or am I dating myself here?

We surmised that it was due to the chemotherapy. Every session kills fast growing cells and probably slows down the rest of them for some time to come. Should work the same way for the nail bed.

So I started paying attention when I went in to the clinic, and sure enough, there were more than enough nails that looked like mine. It's interesting when I see the same nails on a nurse. I know that she knows exactly how I feel.

Back to the Internet to do some research. It turns out that the lines are called Beau’s Lines. The photo only show one line, so you’ll have to imagine what four lines look like. It seems like I learn something new every day.

Now, if I had only gone with Amy to get that pedicure, I might have learned something back around Christmas time!!!! :-P

~~~~~~~~~

After I got my prescription at Shopko, I wandered over to the junk food aisle to see if there was anything worth taking home for lunch. Then I remembered my daughter recently sending some candy home to Ben and I as a belated St. Valentine’s Day present. Hershey’s Kisses. New York Cheesecake KISSES!!!!! BTW, Amy, they were the first thing I sampled!!! I can tell that when I get my taste back, they will be a favorite!

More than six different bags of chocolate, and I can barely tell the difference in taste.

Anyway, I wanted to see if they were here in Wisconsin. I couldn’t find ‘em. But I did find something else. I finally found Green & Black Organic Chocolates!! We had tried them the last time we were in Tampa, as I recall. Shopko didn’t have my favorite, the Ginger (60% cocoa with crystallized ginger) but they did have another favorite, the Maya Gold (55% cocoa with orange, cinnamon, and vanilla).

I bought two bars, one for Ben and one that is half gone. We’re talking 100 grams of chocolate here! I keep waiting for the flavor I remember to magically appear in my mouth. But I can barely taste the orange. That’s why I was looking for the Ginger. There they at least have pieces of crystalized ginger root.

There was also a gift in the package for me that I’ll tell you about later.

~~~~~~~~~

Now I hope that you understand why I keep a close eye on, and drool over, Sunni’s Truffles. Right now, and apparently for some time to come, I can only imagine what they taste like. And I’d like to think that I had a (small) hand in her Inca Gold truffles. I added to the discussion about them on her site, back when she was just getting started making them!! The only thing missing IMHO is the café! But, I can’t offer suggestions for something that I haven’t tasted, and probably won’t be able to for quite some time.

Now, I’m not normally a caramel fan, but her Dirty Girls just might tempt me. Or maybe her Dressed Dirty Girls! How intriguing!

~~~~~~~~~

Oscar shared some photos of his kids out fishing last year, and the results of one of their trips that got mounted. Nice looking fish, and one proud kid! BTW, Oscar’s wife, Dee, is my resident expert on the Oneida language.

That got me missing my “woodsy ways.” So I dug out my CO2 Gamo P23 BB gun and the pellet trap I dug up last night. I loaded it with lead BBs and tried to hit the swinging plate targets in my trap. Ten BBs and I could count the number of times I hit a plate on one hand. Not a very happy camper.

So, I switched over to pellets; they should be more accurate. NOT! Or at least it didn’t seem that way. The first pellet went poot! I opened the action only to find the pellet still in the chamber. So I seated the pellet and tried again. At least this time I heard the pellet hit the trap. But I didn’t hit a target. I had to seat every pellet before it would fire. I don’t know what was wrong, and I’m too fatigued to try and find out tonight. But I thought it was me.

So, back to the basement I went, and dug up my old pump action .22 caliber Crosman pellet pistol. The first four pellets through the old standby hit every size plate—there are three sizes—and hit the smallest one twice. I still got it!

So, I don’t feel so bad.

It may not seem like much to you, but when I lose my taste, lose feeling in my feet and hands, lose some of my hearing, and have a continuous ringing in my ears that won’t go away, when I sometimes have trouble understanding what I read, when I sometimes have trouble expressing what I mean, when I can’t trust my muscles for very long without them starting to shake, it’s simple things like controlling a pellet pistol that gives me hope.

So, I don’t feel so bad, now.

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

My First Choice

2008-02-21T21:51:00.003-06:00

I knew it! I should’a went with my first choice.

I was actually feeling a little better today, not as fatigued as I was yesterday. So, there still is hope!!

I still have the stomach pain, and I did discuss that with the nurses today. BTW, Nurse Diane has moved from chemo over to the radiation side. She’s gone over to the dark side. Or the light side. Don’t really know. Depends on how you look at it. But Nurse Diane is one of the good ones. She gets high marks in my book!

Anyway, I told them about my stomach pain and my “near misses.” Since my cancer is at the GE juncture (that’s gastro-esophageal juncture) everything is pretty much up for grabs here. No one seems to know. But we’re keeping an eye on it.

Did you miss me? I had to get up to take my pain meds. I missed a dose earlier this afternoon and my hiccup/spasms/burps were starting to hurt, big time. I know, I know, I need to stay ahead of the pain, not play catch up! I discussed that with Nurse Diane today, too. I told Nurse Diane that RT Paula had already told me about it. I just have to remember to follow it!

And, RT Amy, the younger, told me that I have been doing great despite my recent pain. I had told them the honeymoon was officially over; they were now hurting me. Apparently, they usually expect MORE fatigue at this juncture. So they are impressed with my progress. I took the opportunity to point out my history of vitamin supplementation and how that can contribute to my overall health. ‘Course, they could be just “shinin’ me on, too!”

~~~~~~~~~

I don’t know if I mentioned Physical Therapist Rose before. One day when I was getting chemo, PT Rose came in and gave me a complimentary back massage. It wasn’t very much of a massage, more like a “laying on of hands.” But she had nice warm hands! They don’t want me doing deep tissue massages right now. They’re afraid of blood clots breaking loose. And, I’d have to go along with them on that one.

She showed up in Radiation last week wanting to give me another massage, for free. I declined. I already had my coat on, I was whooped, and just wanted to get to the car before I collapsed. Did I mention that I haven’t found a handicapped parking spot open whenever I stop at the clinic? So I always end up parking way out in the boonies, anyway. Good thing I haven’t NEEDED a handicapped parking spot, yet.

She stopped by today for a follow-up. I again declined. I told her that although her warm hands are pleasurable, I prefer a little more strenuous massage. She pointed out that my treatments make that difficult and unadvisable. So I told her I would save her the time and her fingers.

She also has tennis elbow (TE)—another reason I declined, but don’t tell her please—so I suggested that she up her intake of magnesium for the inflammation, and described my learning curve with a loss of magnesium due to the Cisplatin, the subsequent pain in my arthritic joints and tendons, and the elimination of my pain by magnesium supplementation. We talked a little more about the benefits of supplementation and she said that she would try it and see how it worked for her. It helped when I told her that I had TE in my left elbow, had iontophoresis, and have had no further problems with that arm, but the treatment of the right arm with NSAIDS and those brace/bands thingies have done nothing to help. Except for the magnesium.

~~~~~~~~~

Please don't be deceived by my bitching some times, Aurora does have some really good people, too!

~~~~~~~~~

I felt so good today that I had a dilemma on my hands. Do I conserve my energy and bask in the glow of less fatigue, or do I get up and do something. I went with number two. And it wasn’t even much of anything. I went downstairs looking for two items stored in my boxes. I really need to get down there and get those boxes sorted out and all the junk tossed out. For some reason that really seemed to take the energy out of me. And it increased my cough. Bad choice! Remind me next time, will you?

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Long, Long Ago…

2008-02-20T21:45:00.002-06:00

…in a galaxy far, far away, back before I was married, I was dating a 'sweet young thing' who had a bad habit. She smoked.

Now, as an individual, you can do whatever it is that you want to do as long as you don’t hurt anyone else. Hurting yourself is just plain stupid. So, I don’t mind if you smoke. BTW, the World Health Organization's first report on second hand smoke indicated that there was no problem at all. It was later that they pulled that report and became politically correct about the issue of SHS.

In fact, one of the reasons I still carry a lighter is so that I can be a “gentleman” and light the cigarettes of women (and men) who don’t happen to have a light. I just don’t really care to kiss an ashtray, if you know what I mean.

Back to the sweet young thing, one day, she told me that she wanted to quit smoking. So, being a gentleman, I offered to help. I told her that I would hypnotize her so that she wouldn’t want to smoke. The fact that I had never hypnotized anyone else before didn’t stop me. How do I know if I can do it if I don’t try? Besides, I was practicing self-hypnosis at the time; how hard could it be to hypnotize someone else?

So, I hypnotized her and told her that she wouldn’t be bothered by the smell of a cigarette, but the taste of a cigarette would be the worst thing that she could possibly imagine. I also implanted a post-hypnotic suggestion so I could check to see if my attempt was successful.

I brought her out of the “trance” and we continued our day. We sat down to lunch at her place, I triggered the post-hypnotic suggestion, and she got the strangest look on her face. She got up from where she was sitting, went into her living room, and picked up the beaded necklace that she had hanging on a doorknob. She slipped the necklace over her head, and instantly remembered that she had been hypnotized, which had been my intention.

So, we talked about her experience with hypnosis, but we never discussed the reason for the hypnosis. I had implanted the suggestion that she forget that part.

We had lunch and left to go somewhere in my old VW. I loved that car! We got into the car and the first thing she did was shake a cigarette out of her pack. She lit up, got another strange look on her face, and stabbed the cigarette out in my ashtray. She shook another out of the pack, lit that one, and tried a drag on that one. (Do they still call it “taking a drag?”) She immediately stabbed that one out in my ashtray and crushed the rest of the pack in her hands muttering something about a “bad pack.”

Meanwhile, I’m trying to drive while observing her, and trying very hard not to laugh.

She stopped smoking from that day onward and stayed off the stuff for several years. She did eventually start back up again, but that was because I hadn’t anticipated everything that could tempt someone to start smoking again. :-)

But, several weeks afterwards, I asked her about her behavior that day and why she had quit. She said that the cigarettes had started tasting very bad for some reason. I asked her what they tasted like to her, and her one-word reply was “vomit!”

Now, multiply that by about a million times for me. As near as I can figure, the last time I had occasion to vomit was when I was a teen, a very young teen. Even when I started drinking, and not having had any training in drinking—drinking was supposed to be a sin for me at the time, and they don’t train you in sinning—even though I overdid the alcohol thing, I never vomited! There was one time I might have wanted to, I fell asleep sitting up with a waste can between my legs, but I didn’t. I like to say that it’s against my religion.

You can imagine my surprise when I almost “tossed” the first couple of bites of my Hardee’s Sausage, Egg, and Cheese Biscuit on Monday just before chemo. I thought that it was just the way I ate it too fast or something. Or maybe there was something wrong with the sandwich.

So I wasn’t prepared at all for this afternoon when I almost “tossed” one cracker dipped in some freshly made cheese dip.

I’ve always said that I’ve been extremely lucky that I haven’t had any nausea or vomiting at all. So far. Others aren’t quite as lucky.

But my problem lies right in the center of my being. If I ever had to shoot someone, my cancer, my tumor, lies right where I would put the first two rounds, my center of mass. Almost everything that happens within the body is centered on what lies just behind the sternum.

I’ve mentioned the hiccups and the spasms that my radiation treatment has caused. I think things are about to get worse. That area has started to get sore, and kinda tender. I’m thinking that the pain meds are going to start again soon.

But, I’m still maintaining my body weight, and I only have five days of radiation and probably one more round of chemo left. Then with any luck they’ll leave me alone for a couple of weeks and then do some imaging to see where we are.

I’ll let you know how it goes!

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Late Radiation Treatment Today

2008-02-19T20:29:00.002-06:00

Due to scheduling conflicts, they had me come in late this afternoon for treatment. I’ll have the same situation on Monday and Tuesday of next week. The nice thing was I didn’t have to set my alarm to wake up!!!

I’ve mentioned the “hiccups” or muscle spasms with relation to treatment. I experienced that again today. And, I do have some pain in the area. I’m hoping that it doesn’t develop into something more.

~~~~~~~~~~

This police abuse issue is developing a life of it’s own. I recently read about a situation near Orlando where the cops told a 17-year-old woman to stop calling them or they would arrest her and her ex-boyfriend just before her ex-boyfriend kills her and then kills himself.

Or how about the Shreveport Louisiana police officer who turns off the video camera while booking a woman for DWI. When the camera comes back on, the woman is laying on the floor in a pool of her own blood, suffering black eyes, busted teeth, and other assorted injuries. “She slipped and fell.” And the officer apparently did everything according to procedure!

~~~~~~~~~

With those in mind, I reflected on my own “run-ins” with the police.

I was once struck in the face by an Illinois State Police officer in my own house. He was looking for someone, and I wasn’t being “forthcoming” with my responses. But that was years ago.

Last year, I had a run-in with a Green Bay City officer. As an ex-QA manager, I take the rules of the road rather seriously. Ask Amy!! So it's not too often that I come to the attention of the police. But in this case I was driving west on Mason Street, which is a four-lane street and was attempting to make a right turn into a two-lane street.

The officer was in the left lane behind me, and by his own words wasn’t paying too much attention to traffic; he was probably playing with his computer. So when I made my turn exactly as taught by my instructors for the conditions, he got bent out of shape and pulled me over.

First he tried to say that I cut him off. I was making a right turn with a trailer. We have to make WIDE RIGHT TURNS if we wish to keep our trailer wheels in the street instead of all over the sidewalk and any pedestrians that are there. I’m sure that you’ve all seen the Caution Wide Right Turns graphic on the back of some trailers. That means I had to use most of his lane to make my turn.

Then he said that I didn’t have my turn signal on and that I nearly ran over the woman who was trying to sneak past me on the right side. I calmly explained that my signal had been on for over a block and that I was watching the woman to make sure that I didn’t run over her vehicle.

“In the old days,” and you might still see it on some of the older trailers, there were signs that had an arrow pointing to the left side of the trailer with the caption “Passing Side.” An arrow pointing to the right side of the trailer had a caption that read “Suicide.”

You try passing on the right side of a tractor-trailer, and you just might get run over. I’ve seen it happen! Yet 4-wheelers still continue to try and pass on the right side. Duh!!

I calmly explained to him that I made the turn as I was taught, and the same way as millions of other truckers make right turns under the same situation. But for whatever reason, he was highly incensed, shouting and waving his arms around.

I had done nothing wrong. I did everything the way I was supposed to. But he was still giving me a hard time.

I called my boss later and explained the situation, that we had an idiot cop in Green Bay. The only thing that I can come up with to explain his behavior was he had asked several times if I had seen him behind me (before making my turn). My guess was that, along with him not paying attention to traffic and possibly almost hitting me, he thought that I should have let him go by me before making my swing to the left to make my right turn successfully.

If I had done something wrong, he would have ticketed me. Since I had nothing wrong, all he could do was put the “fear of my government” into me. I believe that it was Thomas Jefferson who said, “If the government fear the people, that is LIBERTY, if the people fear the government, that is TYRANNY.”

~~~~~~~~~

Speaking of tyranny, Dr. Himmy said I couldn’t use my resveratrol and quercetin supplements until my chemo was over. Which is kinda funny because resveratrol has been shown in some instances to induce apoptosis, which is a programmed cell death. Cancer cells survive because they somehow turn off their susceptibility to programmed cell death. Resveratrol turns that susceptibility back on. So it works well with chemo.

Oh, well! One of these days I need to go on a rant about allopaths.

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

No Chemo Today!

2008-02-18T20:12:00.002-06:00

Although I had radiation therapy today, I wasn’t administered chemotherapy today. My blood work was too far off the charts for the clinic to be able to sell me another treatment.

Now, it doesn’t surprise me. Carboplatin, one of my current anti-cancer drugs, causes bone marrow suppression. That means that my bone marrow isn’t making the necessary blood cells for me to fight off infection and the like effectively. Now, the low point in this suppression occurs 21 – 28 days after starting use of the drug. Guess what day today is.

Let’s see, looking back in my diary/blog I find that I started chemo on the 21rst of January. So, last week’s chemo, the one I didn’t figure that I’d get from the dosing schedule from my online investigations, was 21 days. I figured three weeks of treatment, and one week off to allow the body to recover. But the clinic went ahead with four weeks of treatment, the last week’s dose slightly reduced due to the fact that my blood work was already starting to reflect what was happening within my bones. So they had to take this week’s treatment off. That’s 28 days.

The good news is that this should be as bad as it gets. I know that you’ll forgive me if I don’t get too terribly excited.

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Slower Traffic Keep Right

2008-02-18T19:54:00.002-06:00

While heading to my 8:30 AM chemotherapy appointment this morning, I was struck by how many women were in the left lane of I-43, going 15 mph or more UNDER the posted speed limits. What is so hard to understand about the fact that if you are going slower than the guy behind you, you are required by law to move to the right and allow the faster vehicle to pass you? Even if you are going the speed limit, you still have a legal and moral obligation to move to the right!

From the Wisconsin DOT:

Slower traffic keep right: Drivers must allow faster traffic to pass in the left lane on divided highways

Life in the fast lane is not for everyone, and often it's better to let those moving more rapidly just pass you by. This is especially true while driving on Interstate highways and other multiple-lane roadways. If you're traveling slower than other vehicles, you can help traffic move more safely and efficiently by staying in the right lane as much as possible.

According to Wisconsin law, any vehicle traveling "at less than the normal speed of traffic" is required to be driven in the right lane (or as close as practicable) except when overtaking or passing another vehicle. A citation for violating this law costs $198.60 with four demerit points assessed on the driver's license.

"Even when you're driving at the posted speed limit, you should allow faster moving vehicles to pass. Trying to force other drivers to slow down by blocking the left lane does not make our highways safer. Instead, it leads to more tailgating, road rage and other problems," says State Patrol Superintendent David Collins. "We hope that drivers will leave enforcement of speed limits to our troopers and other law enforcement officers."

The State Patrol advises motorists to follow these guidelines to help maintain a safe flow of traffic on Interstates and other divided highways:

If you're not passing another vehicle, use the right lane as much as possible.

If you're in the right lane, allow other drivers to merge from the left lane into the right lane so that faster traffic can pass in the left lane. In addition, provide space for vehicles to merge into the right lane when they are entering a roadway from an on-ramp.

If you're in the left lane, don't tailgate or try to make a slower vehicle ahead of you move to the right lane. Be patient and courteous.

Superintendent Collins says, "When slower moving vehicles use the right lane, traffic flows more smoothly with less congestion and road rage, which certainly helps make our highways safer and more efficient."

Road rage is right! I had to work my way around five women this morning, passing them on the RIGHT, just to exercise my right to drive the speed limit. And several of them honked at me! They’re breaking the law, and they honk at me! Why do I need to reduce myself to the level of the lowest common denominator?

I need one of these. I’d like to get the GTFOOMW option printed on the back side, though. For when I need to express myself. I have thought of something else I can use, but I'll plead the Fifth!

And it wasn't just women. Although they happened to be the lawbreakers I encountered, one of the nurses who lives in Crivitz said that men were involved as well.

Thoughts on the Police

2008-02-17T20:04:00.002-06:00

I started out this afternoon to put down some thoughts I had bouncing around in my mind, such as it is. Then I realized that I really didn’t want to give up my Fifth Amendment rights, so I had to discontinue that line of thought. Did you know that the police will read your blogs and MySpace accounts looking for evidence of crimes, if you are a “person of interest?” And one never knows when they will become a POI.

I see that I haven’t posted anything about Amy’s friend, Brian, who was sorely mistreated by the “po po.” The deputy did finally get arrested and booked at the Orient Road jail and released on bail. Way to go Brian!! I hope that they treated her better than she treated Brian.

But there are a lot more abuses going on out there. Here’s a sampling:

Here’s another Hillsborough County deputy sheriff taking it out on a Tampa woman concerned for her father who was having a heart attack. I like her father. He’s just like me!

Cop tasers citizen handcuffed in back of his squad and gets a slap on the wrist for it.

Ohio woman calls 911 after being assaulted; ends up being held down and strip searched by male and female deputies. Sheriff denies the situation. This one is SICK!! Part 1 video, Part 2 video.

Baltimore “cop” needing anger management classes vs skateboarder, Same Baltimore cop taking on street artist’s box. At least they suspended the Baltimore cop, with pay!

Cop arrests firefighter, but at least it cost him something.

Utah bill wants to hide police misconduct from the public.

Are you sick yet?

There are two types of laws in this country: malum in se and malum prohibitum. Malum in se refers to an act that is wrong in itself, things like murder, rape, and theft. Malum prohibitum refers to an act that is prohibited by statute, not because it is wrong in and of itself, like driving on the left hand side of the road here in the States.

Our police used to be considered Peace Officers; they were here to protect us from folks intent on committing mala in se (plural). Over the years they changed into Law Enforcement Officers intent on enforcing things that were mala prohibita (again, plural). Why?

I think Ayn Rand hit the nail on the head when she said, “There's no way to rule innocent men. The only power any government has is the power to crack down on criminals. Well, when there aren't enough criminals, one makes them. One declares so many things to be a crime that it becomes impossible to live without breaking laws.”

I tried to find a recording on the Internet today by Jinx Dawson from the group, Coven, entitled One Tin Soldier from the movie, Billy Jack. I ended running through my copy of the movie to see if I could record it from there. Looks like I’ll have to put up with some movie background noise. But a comment Billy made while I was browsing through the movie came thundering down on me today. He said, “When the police break the law, then there is no law, just a fight for survival.”

I gotta get to bed. I have chemo bright and early tomorrow morning and then radiation. And this HTML took longer than I thought!

Kunolunkwa, y te quireo! And don’t forget about your jury rights!! It's one of the few ways you can protect your fellow individuals from police abuses.

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

I Need A Vacation!

2008-02-16T21:35:00.000-06:00

I’ve only been off work for five and a half months; I need a vacation. You see, I’d rather be working than going through what I’m going through.

I decided to take a long hot bath this afternoon. My neuropathy is less intense today, but I found out that my feet really were cold; they just didn’t feel cold. So I wanted to soak them in the hot water.

I climbed into the tub, looked around, and realized that I was whiter than the tub! Except for a few moles, scars, and other pigmentation, I’m very white. Even the purple veins in my feet have gone away. I’m almost an albino! So I figure a couple weeks soaking up some Vitamin D in the sun in Florida might just be the thing I need.

I only have eight more days of radiation, and two weeks of chemo that I know of, then I’m assuming a PET scan (I know, I know), and then I just need to regain my strength before returning to work.

I pretty much stayed in bed today. I kept up my “riding the recliner” routine, so I feel pretty well, not quite so fatigued. I get fatigued quick if I move around too much, so I don’t move around much.

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

It Has To Be Hard…

2008-02-15T22:32:00.002-06:00

…on my son, Ben. He gets to get up in the morning, see me feeling crappy and very fatigued, watches me leave driving myself to Radiation Therapy, and then goes to work himself, not knowing if I made it home, or if I did make it home, how I survived the day. He has to wait until he gets home to see if I survived my fatigue.

And considering I’m not in the best of moods lately, being fatigued, I haven’t played much with Mousebane, which has to bother Ben as well. M-b wants attention and I’m inconsiderate enough that I’m focusing on myself and trying to feel better, and don’t pay as much attention to him.

It’s gotta be hard.

~~~~~~~~~

Speaking of feeling better, I haven’t heard back from the doctor on why I felt as good as I did on Monday and Tuesday. Or about my supplements. Maybe Monday.

And yes, I do have appointments scheduled for Monday. They kept me kinda late on Monday and the front desk folks were gone. Good thing they have computers to cover for their lack of attention to detail!!

~~~~~~~~~

Speaking of foul moods, this week it apparently waited until the end of the week instead of happening right away. I’ve had several situations while driving that haven’t helped my mood. And they weren’t my fault.

Yesterday, I had one idio—oops, starting to sound like kd—one mentally-challenged driver turn left in front of me from the RIGHT lane. I had to lock ‘em up in the middle of the intersection, but I missed them quite nicely, thank you! I always expect the unexpected from the other driver. I watch to see how competently they drive and adjust my driving accordingly. I was waiting for something like this to happen from this driver. I wasn’t disappointed.

Then today, I was entering the highway on one of those entrance ramps that turns into a lane which then exits right away. I was ahead of the driver in the next lane and signaled my intentions to get out of the exiting lane and into their lane. She sped up. I was already doing the speed limit, which is 65, and she speeds up.

I’m running out of highway, she had no one along side of her, while I had folks behind me, and SHE SPEEDS UP to get in front of me! I was doing 80 before I finally got to pull in front of her.

THEN, when I went to make the turn into my drive, there was a bunch of traffic. It happens when you live on one of the main streets. So, some old guy thought he’d be nice and let me turn in front of him. The only problem was, there were folks behind him, wondering why he was stopping with no one in front of him, and preparing to drive around him in the other lane.

Had he not stopped, I would have been able to make it across the two lanes of traffic right behind him. But he slowed down and stopped, allowing the rest of the traffic to catch up with him.

This is how people get killed. He wants to be a nice guy and changes the rules of the road. No one else knows what the heck he is doing. Well, almost no one. With his SUV, only another one, like me, can see behind or around him to know that there is traffic coming up on the other side of him in “my” blind spot. And he didn’t think to check. Someone who is used to doing what someone else tells them to do would start to make the turn, only to get hit in the side.

Just follow the rules of the road folks, and we’ll all live a lot longer! And I won’t be in such a foul mood.

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

I’m So Sorry

2008-02-14T22:16:00.001-06:00

I don’t have a lot to say tonight. This is what, week 4 of Radiation Therapy, and week 4 of the altered chemotherapy. The fatigue is getting worse. The peripheral neuropathy is making my feet and hands feel like they’re cold, but I guess I’m getting used to it.

I emailed the chemo oncologist. I actually felt pretty good after chemo and most of the next day. I wanted to know what had been done differently so we could duplicate it. I suspect that it might have been the shot of Atavan that they gave me. I felt less fatigue and was much more motivated. Had the feeling lasted through Tuesday, I might have actually done something to get a little exercise and to get some projects done. As it is, I feel like doing absolutely nothing.

I also asked if I could take a couple of new supplements.

I talked with one of the nurses when I went for radiation, but got no answers. I’ll have to let you know if I ever get an answer.

And I just realized that I don’t have an appointment set up for chemo next week. Gotta go!

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Let’s Just See

2008-02-13T21:55:00.001-06:00

Things are just getting interesting. Tuesday started out pretty good. I still have to find out what went right. But last night wasn’t much fun. It seems that my stomach is getting sensitive again. Not really pain, but more like muscle spasms.

Couple that with the gas from the chemo killing off the intestinal flora and fauna and the resulting pressure in the stomach makes for an interesting night. It almost feels like heart palpitations.

I talked with the Radiation doc today. He said that there shouldn’t be any particular problems, but since everyone is different, what I’m experiencing might need to be watched. He might recommend an anti-spasmodic drug or two.

So I am kinda dragging butt today.

~~~~~~~~~

Since Cuz made a request that I post a link regarding Amy’s friend, I will do so. I just can’t believe that our police forces can totally disregard human rights and dignity like they did in this case. Here’s CNN’s report on the situation.

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

The Day Started Well…

2008-02-12T23:03:00.001-06:00

…but eventually went down hill.

I don’t know why, but I didn’t feel as bad after chemo yesterday. I was given Lorazepam for the first time that I know of. Reading the side effects, I don’t know that this may have been the cause of my improved condition.

As I stated, I felt pretty good; my fatigue had abated somewhat. Even the nurses commented that I looked better.

I stopped at the store to pick up a few things, and noticed that I was getting fatigued. By the time I got home, I was pretty down. I ended up riding the recliner most of the rest of the day.

I talked with Amy tonight. It seems that a quadriplegic friend of hers was arrested. When the police asked him to stand (???) so that they could frisk him, he informed them that he was unable to do so. So they dumped him on the floor! They picked up the back of the wheelchair he was in and unceremoniously DUMPED THE GUY ON THE FLOOR! WTF????

What is the police force in this country coming to?

Keep the Faith!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

“Rescheduled” Must Mean Something Else…

2008-02-11T22:25:00.000-06:00

…’cause I had chemo today. Because my White Blood Cells were down slightly, they reduced my dose a little.

~~~~~~~~~

I picked up my temporary handicap-parking placard. Of course, when I got to VLCC, the handicap spots were all full. I still had to park in the general lot! You’d figure that in front of a cancer clinic they might have more than three handicap spots.

~~~~~~~~~

Talked to Dr. P. today. I asked him why he had asked about my sister, Cuz. He said he was just refreshing his recollection of the visit, seeing as how Cuz and Ronny were from out-of-country.

~~~~~~~~~~

I also asked if Dr. P. would supervise the use of the Maruyama vaccine that is currently a CAM (Complementary & Alternative Medicine) treatment for cancer. He said that he would. He said that he has no problems with treatments that don’t cause any harm and that may actually work.

I did find it slightly funny ‘cause the anti-cancer drugs may help but they definitely can cause harm. Remember my “cold” feet, my reduced hearing, and my extreme fatigue?

~~~~~~~~~~

Why would the name Pedro Infante be familiar to me? I was talking with una amiga and she brought his name up. He died when I was six, long before mi amiga was born. No se! Don’t know!

I’m waiting for her to bring her almost 5-month-old hija bonita over next week so I can play with her. The baby daughter, not the mamacita! Although, if the circumstances were different…… But the little girl is sick right now, and that might not be too good for me to catch something communicable.

~~~~~~~~~

I started out the day pretty tired. I had to almost lie on the counter at the DMV ‘cause I was whooped! They don’t provide stools. But after sitting around the VLCC, I did feel less tired. But I did find out that they give me something to make me “feel better.” I need to find out what that is. It’s the only thing I can think of that can account for the change. It might be useful to get a prescription if the side effects aren’t too bad.

~~~~~~~~~

I still have one more hospital complaint. When they did the CT scan with the high contrast dye media, they put in an antecubital large bore IV and left it in the entire time I was in the hospital. It actually leaked while they were forcing the dye into my arm.

Reading the card I carry in my wallet for my port, I found that they could have actually used my port; it was rated for what they did. But they said “no, can’t use that!” So I asked the nurses today. “Yeah, they could have used your port.”

Doesn’t it make you wonder, just a little bit?

Kunolunkwa, y te quireo!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Monday’s Chemo Rescheduled?

2008-02-10T22:08:00.000-06:00

OK, I was going to get up and do something before starting this, but for the life of me, I can’t remember what it was.

~~~~~~~~~

While updating my Pocket PC I ran out to My Aurora dot org to check my schedule since they now have my appointments back up and running online. I found out that my labs and Dr. consult are still pending, but they list my chemo as being rescheduled. I wonder if they did that after my visit Friday and just didn’t bother to tell me, figuring I’d find out about it tomorrow.

While looking for a link to show you the MyAurora site, which I decided not to, I found this job posting for St. Luke’s Hospital. I wish I had the experience for a job like this at Aurora here in Green Bay. I probably wouldn’t last long, though; people who point out the truth rarely do. It’s an occupational hazard in QA/QC; nobody likes a nagging conscience.

~~~~~~~~~

I was going to go to bed early tonight because I need to get up early tomorrow. But I forgot that I slept in until quite late this AM, so I’m not that sleepy despite having taken my sleep meds. So, we’ll see what happens tomorrow.

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Not Much To Tell

2008-02-09T21:35:00.000-06:00

I didn’t do a darned thing all day.

Oh, I had a bratwurst and a pot pie (no, not THAT kind!), some cheese and crackers, and even waffles for breakfast. So, I am eating again, just not a whole lot.

I spent most of the day “riding the recliner” watching the first two discs of Season 1 of NCIS again. Third time through, I think.

My neuropathy has calmed down some from yesterday. My feet were really “feeling” yesterday. By that I mean there was a LOT of sensation yesterday; they felt really cold. Today they don’t feel as cold, the sensation is lessened. I can see where, if it gets any worse, I might be in need of pain meds. It doesn’t “hurt” now, but sure is annoying.

I am a little less fatigued today. I can stand up a little longer today than yesterday. But I’m still not ready to run any marathons. And, I will get “breathless” if I’m up for too long, as well. I don’t know what is going on. I also have a slight pain on the right side of my back at about the diaphragm level. My guess is that it’s a side effect of the radiation therapy. They can’t hit just the cancer cells; they hit some of the healthy cells, too. And that may cause some pain.

I pretty much skimmed through Reservation Road. If I hadn’t seen trailers for the movie, I might have given up on the book. I kept hoping that it would get better. It’s been called “dark,” and I wholeheartedly concur. Now, it even makes me wonder if I want to see the movie. Now, I know that I do have some trouble concentrating, but I don’t think that was the problem.

Although it’s about 17 degrees F. the wind is really blowing, here! And tomorrow the highs will be around zero degrees F. Must still be winter in Wisconsin!

I have to run over to the Driver’s License Bureau on Monday to get my handicap permit. I’m looking forward to that, NOT!

So, what else? I think I’m just going to take some advice, and try to get some rest this weekend, and not do anything, and see how that goes.

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Today Wasn’t Much Fun

2008-02-08T19:26:00.000-06:00

There, I admitted it. My butt got kicked today. Royally! And I don’t know why.

Let’s talk muscles; specifically, in my case, voluntary muscles. “Voluntary muscle contraction is used to move the body, and can be finely controlled, like movements of the eye, or gross movements like the quadriceps muscle of the thigh. There are two broad types of voluntary muscle fibers, slow twitch and fast twitch. Slow twitch fibers contract for long periods of time but with little force while fast twitch fibers contract quickly and powerfully but fatigue very rapidly.”

Now thigh muscles are also called skeletal muscles, and are controlled through voluntary muscle contractions. When I get tired, when my butt gets kicked, as I say, the muscles “fatigue very rapidly.” I got tired just standing in the shower this AM. My thigh muscles just start shaking from the exertion of standing. So, I’m assuming that my fast twitch fibers are the ones doing the fatiguing. I just don’t know why.

At the same time, I start to breathe heavy, like I’m running out of oxygen.

Now, the chemo causes peripheral neuropathy; my nerves die in my extremities. That’s why my feet feel like they’re freezing all the time, even when I lying in a hot tub of water with sweat breaking out all over my head. It just feels like my feet are cold. But chemo can also affect the neuromuscular junction, where the nerve attaches to the muscle as well. And that causes me some worry. Assuming that I survive the cancer, I may just end up disabled by the neuropathy.

Now, the VLCC did my blood tests today and it looks like they did everything but what I went in for: to test my rat poison levels. But the results look good. Yes, some of my results are not normal for “normal” folks, but are acceptable levels for someone going through what I’m going through.

I did notice that I bled quite a bit from the antecubital venipuncture just like when I had a high INR.

I am slightly anemic, but the chemo and the IP-6 can account for that. And it’s not enough to make that big of a difference. When I was in the hospital a month ago with similar symptoms, they had me up walking the halls watching my blood oxygen levels. Although I was huffing and puffing, my O2 never went below 98%. So it would seem that something else is going on.

Now, my biology courses are decades behind me in the past. I don’t know what is going on, and if the doctors and nurses can’t figure it out, how can I? Actually, I shouldn’t say that, but more on that at a later date.

~~~~~~~~~

I didn’t get to see my radiation oncologist today, but another doctor standing in for him. And he couldn’t, or wouldn’t, answer my questions. What are you gonna do? They still expect payment whether they answer questions or not.

So, I guess I’ll have to wait until Monday to see if the chemo doctor I see then will have any answers.

~~~~~~~~~

I have a mystery on my hands. Someone dropped off a book, Reservation Road, a plate from the Oneida Casino, and some dried peanuts. Left ‘em in between the doors in the back.

Now, I’m not one to eat foods that I don’t know where they came from. And the book still had the price sticker on, but there was no clue where it was purchased, although I will read that. I’ve heard good things about the movie—I like Mr. Ruffalo and Ms. Connelly—and wanted to see the movie. So I’ll read the book first.

But it still presents a mystery that needs solving, although I suspect I know who dropped the stuff off.

~~~~~~~~~

And I didn’t get to my taxes today. My brain just isn’t functioning THAT good. I’d hate to tell you how long it took me just to type all this up. Let’s just say that I’m not at my best today and let it go at that.

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

One Of Those Days

2008-02-07T18:57:00.000-06:00

I’m sure that you’ve all had one of those days, right? Not really “sick” sick, just not feeling real well. If you had your "druthers," you’d rather not go in to work. And when you get there, you just feel like you can‘t think. Yet they expect you to DO SOMETHING.

That’s about how I felt today.

So what did I decide to do "just to do something?" My taxes. Except for a couple of years where I needed help, I’ve always done my own taxes. This year was no exception. But having to try and understand all that double talk was just too much. My head hurts, but I got it done.

Oh, don’t worry. I’ll go back over everything tomorrow to double check myself. But I’m amazed at how much I didn’t make this year. Try taking four months off sometime and see how that affects your bottom line.

I watched some Selena music videos before running off to radiation therapy today. It was the first time I had the DVD player fired up in a while.

Speaking of Lisa Layne, I even checked on Lisa Layne videos on YouTube to try and decompress from all that government gobbledygook. Nice looking girl! And what a voice!! But check out Vince Vance’s hairdo! Hey, it made him famous! Whatever works!

So I decided that I’m gonna watch a movie tonight. I decided on Road House with Patrick Swayze and Kelly Lynch. I haven’t seen it for a while and the music will really, really, help.

Kunolunkwa, y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Starting Week 4 of Radiation

2008-02-06T22:03:00.000-06:00

I actually woke up hungry this morning. However, being out of practice when it comes to eating, I just drank an Ensure.

I’ve stopped the pain meds again. It no longer makes sense to take them. The stomach doesn’t react with the same level of pain it did a while ago. It is interesting to note that I didn’t sleep as well without the pain meds. It is strange that I do get my hiccups with belches included, and I can have some pain when I yawn. Have to talk to the doc on Friday.

I see where Heath Ledger was taking much the same meds as I have been, except for the anti-depression meds. I haven’t had those yet. Although he didn’t OD on any one drug, the combinations did him in. That’s why I try to stay away from as much as I can.

It’s been interesting to watch the Site Meter traffic lately. I got a hit from Georgia looking for some info I haven’t posted yet. I had to stop and think about whether or not I had. But it is a post I’m working on. And I got a hit from a computer where no information was available at all, looking for info on INRs and radiation. Curious.

My fatigue level has improved somewhat. My legs were not as week as they have been, but my arms are still pretty weak. “There’s a whole lotta shakin’ goin’ on!” I mentioned to RT Paula that I had finally ordered a temporary handicap permit, and she said that was good because my fatigue level would get worse with 3 weeks of radiation to go.

So I did “ride the recliner” for a while today instead of spending all day in bed. There was stuff that I wanted to do, but I had to choose between feeling good and feeling good, if you know what I mean.

As a side note, I had talked to RTs Paula and Amy about Vince Vance and the Valiants and Lisa Layne’s version of All I Want For Christmas Is You. They sounded interested so I burned the song for them to listen to on their stereo. RT Paula loves Lisa Layne!! She took the disc home and listened in the car with the sound turned up. She really likes LL. Asked me if she had other albums out. Apparently she has three of her own out.

Kunolunkwa y te quiero!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

I Remember The Day…

2008-02-05T19:33:00.000-06:00

…just three short weeks ago when I learned, with surprise, that I was going back on chemotherapy—they got me started that same day! I remember a few days later when was told that I wouldn’t be doing the “old” routine—one day of chemo then three weeks off—but a “new” routine—three weeks of chemo and then a week off. And I remember TODAY when I found out that I wouldn’t even be doing a ‘new’ routine, but a “newer” routine—no time off at all. I’ll be getting one day of chemo every week I’m on radiation. WTF???

I know, this goes contrary to what the Wikipedia articles on my “new” anti-cancer drugs stated, but what does a peer-reviewed dictionary article know?

~~~~~~~~~

Just so you know how I’m feeling, I submitted an application for a temporary handicap permit. Becky had given me an application for permanent handicap permit, so I had to take it back and exchange it. Or maybe she knows something that I don’t?

But with only three weeks of radiation and expectations of it getting worse, I felt I had to do it. Folks take all the close parking spots in the cold snowy weather and that means that I have to walk long distances with my fatigue in the snow! They don't plow very well, at least not to support pedestrian traffic. And the arms get just as tired; I don’t know that I’d be able to hold myself up with a cane or walker.

~~~~~~~~~

I also go the results of my latest INR, I'm back down to 1.4, just a little over the 1.2 max that is considered normal. So, I'm back up to 5 mg of rat poison a day! Edited: added 2/5/08 @8:50PM

~~~~~~~~~

Just had a call from Nancy. While we were talking I said something about being stubborn like Shrek, and she laughed. Then she dared me to put my comment on the blog. So I will!!

I said that I was stubborn like Shrek being “big, green, and farts in mud puddles!” She laughed! And then she dared me! So There!

~~~~~~~~~

I got home from chemo and radiation and was so tired I fell into bed. So I did get a nap this afternoon. And I think that I'm starting to get hungry, finally. We'll see what tomorrow brings.

Kunolunkwa y te quiero! BTW, I found out I’m helping a little!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Monday, February 04, 2008

2008-02-04T19:39:00.000-06:00

I slept in until almost 2:00PM yesterday. And I needed the sleep.

Ben and I went to see Cloverfield at the De Pere Cinema Café, since the movie wasn’t playing anywhere else in the Green Bay area. It beat having to drive to Appleton. I liked the movie, but felt I was missing a lot without subtitles. But then again, I guess it wasn’t supposed to have perfect acoustics. Maybe I’m getting too sensitive about my hearing loss.

So, we got back late and I didn’t feel like posting anything.

My normal routine, today; got up, showered, and off to the radiation therapy. Maybe you remembered that I should have had my last of three chemotherapies today. Last week my appointment was moved to Tuesday morning, early. So I’m off to bed real quick here.

I did get some laundry done, today, so I am up and about.

While I'm still able to, I started to put together a personal perspective, i.e. how did I get here? I hope to have something done this week.

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Perhaps I Need to Apologize…

2008-02-02T20:15:00.000-06:00

…for not being clear enough about the pain I am experiencing and subsequently taking pain meds for.

I do not have ‘severe’ pain like a broken ankle; I have more of a ‘chronic’ pain, like an un-healing blister or a cut on the ball of my foot. It doesn’t prevent me from walking, but it does produce a noticeable limp. I call it a ‘behavioral response modifier.’ The pain causes my behavior to change to try to avoid it. But since it can have several different causes, I don’t know which way to turn to avoid the pain. And that’s what is distressing.

So I tried an experiment today. I made one of my “warmer” breakfasts today. Stir-fried onion with a spicy sausage patty chopped up and two eggs scrambled into that mess, with dark soy sauce and Sriracha sauce mixed in at the end. After seasoning, a slice of Velveeta cheese is melted on top. Were I feeling more ambitious, a chunky medium heat salsa would also be added to the plate!

OK, so I like it warm!

Since my mouth and throat haven’t encountered too much in the way of ‘heat’ lately, they were a little concerned about the spice. But my stomach didn’t complain at all!!! That would tell me that I don’t have any ulcer-like damage to my stomach lining. But I would have guessed that. I did guess that; otherwise I would have been in pain today. :-D

With the other chemo treatments, the tumor would stop hurting after a couple days of ‘irritation.’ I’d get hiccups for a day or two, some strange feelings in the area, but then the pain would go away.

It hasn’t been that way with this type of chemo treatment. I’ve had two treatments so far (third one next Tuesday) and the pain is still with me.

The radiation therapy is still an unknown to me, no historical data for me to refer to, so I don’t know what’s going on. I don’t know how to treat it.

And, I’m still pretty fatigued. But I did sleep in today, which was nice. I figure any energy I can save will help in the long run.

Kunolunkwa! You know, just out of curiosity, I just did a Google search on kunolunkwa. Either we’ve misspelled it Dee, or I’m the only one using it on the entire Internet! LOL

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

FAR OUT!

2008-02-01T18:49:00.000-06:00

Monday, my post TOO MUCH Rat Poison! was about the excess of Warfarin that was in my body due to the dosage prescribed by my “doctor of the day.” I was told at the time that the result for my international normalized ratio (INR) test was “way off the charts.” Today, after another lab test, I found out how far “off the charts” I really was on Monday.

If you had visited the INR link and read the article, you would have found that “the normal range for the INR is 0.8-1.2.” This past Monday, I was at 16! And, after a week of no Warfarin at all, I’m still testing at 3; twice as high as the “normal” range! However, since the Warfarin was prescribed due to blood clots, a range of 2-3 would be indicated.

Now, the Wikipedia article on Warfarin suggests that “for patients with an international normalized ratio (INR) between 4.5 and 10.0, 1 mg of oral vitamin K is effective” at reversing the effects of the warfarin. What did the doctor of the day do to reduce the risk of hemorrhage for me? Let’s see if I can remember…oh wait, that’s right; NOTHING! Oh, I got to discontinue my intake of warfarin for the week and just live with the risk. I have yet to find an LD50 (median lethal dose) or IDLH (Immediately Dangerous to Life and Health) numbers for humans. That would be interesting to know.

So, I have been directed to split my pills and start again with a dose of 2.5 mg; the results of the reduced dosage will be checked on Tuesday.

Are we having fun yet?

I apologize if I’m not as “chatty” right now as I have been. With everything going on, I just don’t feel like “talking.” And, as one of you can attest, there are several “discussions” that I’d like to jump into on another site, but I have trouble keeping my mind focused on the task at hand. And I am having fun typing on this keyboard with my hands shaking like they do, due to the muscle fatigue.

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Back On The Pain Meds

2008-01-31T20:50:00.000-06:00

Let me ask you a question. What do you do when:

Your anti-cancer drug can cause stomach pain, and

Your tumor causes pain when it is compressed by food and/or gas, and

Radiation therapy can cause pain in a 'minimal' margin around the outside of the tumor where healthy tissue gets irradiated, and

Hunger can cause stomach pain, and

You have stomach pain?

What do you do? How do you treat something like that?

I don’t know, either. So, I’m back taking the pain meds and trying to eat, hoping that things resolve themselves.

~~~~~~~~~

After my second night back on my old sleeping pills, I woke about 6AM to visit the little boy’s room. I went back to bed and tried to sleep some more, but it didn’t end up being normal sleep. Really strange feelings….

When I did get up, I found that, as good as I had felt the last couple of days fatigue-wise, I felt exactly the opposite today. Really wasted! The only thing that I can figure is that these are part of the withdrawal symptoms of the Temazepam.

So, here I am, really tired, sleep-wise, and really fatigued. I wanted to stay awake so I can sleep tonight but I had a hard time doing so. Just typing this makes me want to sleep. It doesn’t help that I’m lying down in my bed typing this, either. So, I took another long hot bath and read a book. Something that required some concentration, but not too much.

Am I making any sense at all? That’s how tired I am.

Tomorrow’s lab tests will tell me if I’m to go back on the rat poison. And Tuesday starts the new Round 3.

Oh, and BTW, kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Short Note Tonight

2008-01-30T21:01:00.000-06:00

Wouldn’t you know, I slept pretty good with the Sominex last night so I get a "wrong number" call at 6:50AM!! But I went right back to sleep and woke up before 9:00AM. I might have to start setting my alarm, just so I can get out of Ben’s way when he gets up to go to work.

I got dressed very warm and went out to blow some snow in the below zero temps with a good wind going. I had felt OK when I got up; I am getting stronger. Otherwise I wouldn’t have tried it. But I know the cold and the equipment better than Ben does. But just moving that blower around in the cold really wore me out. I was huffing and puffing when I came in.

I felt bad; Mousebane wanted to be petted, scratched, and loved and I just didn’t have the strength to hold my arms up.

I know; I know. That’s how us old guys turn up dead or in the hospital. I took rest breaks in my warming vehicle. But I was still tired.

Today, makes the start of my third week of Radiation Therapy.

This new chemo is starting to piss me off. It’s affecting my brain even more. I’m starting to make mistakes doing easy Sudoku puzzles!!!! And it’s taking me twice as long to do the colored tile version. My brain is slowing down. :-(

Monday, they took me off the rat poison for the week. I was supposed to have labs on Friday to see whether or not I restart the stuff. They never scheduled labs for me! I had to stop by today and ask when my appointment was. So I sat around while they talked about it and finally they sent me home; "they’d call me later." They did call and I had to tell them what the doctor had said. Don't they document anything????

So, I finally have an appointment for labs on Friday.

Oh, I mentioned that their online appointment schedule system for me was gone. I sent two emails last week and no response. When I was in on Monday I talked to Nurse Diane about it, she said that she’d see if she couldn’t do something about it. When I got home, there was an email waiting for me telling me they had corrected the problem. Unfortunately, they had the name wrong, which they have since corrected without input from me. Things look like they’re working for now. So I checked and my Friday appointment is there! Cool!

I even had the energy to mount my wall clock in the bedroom. The 3M sticky hook holding the clock fell off the wall when I had the humidifier going in here. So the clock fell too. I put it back up using a screw. It’s gonna take more to get the clock off the wall now.

I’ve been tired all day—sleepy tired—but I’ve resisted taking a nap; I’d rather sleep at night. The lack of pain meds has caused a little problem, but not much. I have the chemo causing some stomach pain, and then there’s an unnamed tumor not wanting to be disturbed in there letting me know all about it. But for now, it’s tolerable.

All in all, things look pretty good. I’m waiting for warmer weather.

Kunolunkwa!!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Not Much To Tell Tonight

2008-01-29T20:56:00.000-06:00

I’m tired; what can I say? But I won’t take the Temazepam any more. (I see my link in the comments this AM didn’t work.) Check this out! Too many issues with this drug. I’ll go back to my generic Sominex. At least if I’m not sleeping, it won’t be causing other issues.

It’s too bad, too. It worked great at first.

I have been eating a little more, but that just gave my diarrhea some ammo! :-) So I’m taking my generic Immodium AD.

It’s just been a battle of side effects.

But, despite the lack of sleep, I did feel a little less fatigued today. And that’s the day after chemo! Shocking!

I didn’t mention that I saw the lady, Diane, that I had talked to on the phone—if you remember, she always called me sir—about her experiences with VLCC yesterday. So we had a chance to catch up a bit. I can see that I’m not the only one who has had issues.

I’ve also tried to cut back on the pain meds, again. There are just too many side effects that could be giving me grief. If I can sleep without it, I want the sleep more than I want the lessening of pain.

And if I’m up early again tomorrow, I won’t bother you guys here. It was just too much to have made the joke only to have it come true. I won't joke about sleeping anymore!

OK, I’m outa here. Keep the Faith, and Pass it Around, Too!

And remember, Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

TOO MUCH Rat Poison!

2008-01-28T20:26:00.000-06:00

Heinlein said something to the effect that a pessimist is right more often than not. And, I believe when he is wrong, it’s usually a pleasant surprise.

I’ve always been a pessimist. First, I like being right. Besides, as Heinlein says, “…a pilot [or a QA Manager –HB] who isn’t a pessimist isn’t worth a hoot!” So, it’s a professional hazard.

But I do hate “sounding” like a pessimist.

Now, I could have predicted this one. My INR (International Normalized Ratio) is “way off the charts!” I am in jeopardy of bleeding out just like our little fuzzy friends who get Warfarin used against them for just this purpose. So now I discontinue the Warfarin for this week.

Let’s think about this. First, what haven’t I been doing lately? If you guessed eating, you’d be right. At least not much anyway. So what am I not getting enough of? If you replied “Vitamin K” give yourself a pat on the back. And a gold star! “The prothrombin time can be prolonged as a result of deficiencies in vitamin K, which can be caused by warfarin, malabsorption or lack of intestinal colonization by bacteria (such as in newborns).” Or how about chemo patients who have their intestinal bacteria severely reduced by chemotherapy, as evidenced by lots of flatulence. It can also be caused by not eating, which denies the source of Vitamin K to the body; food.

And, although I have read arguments on both sides, remaining a pessimist would lead me to believe that my supplementation with Omega-3 fish oils would also prolong prothrombin time. Just a guess. I discussed this with my doctor-of -the-day when they put me on the Warfarin.

So, I guess I’ll have to hit them over the head with these issues. Again.

Then again, who listens to the patient?

BTW, today was my fifth chemical, or as they say "medical," oncologist, Dr. D., not counting their Nurse Practioner. I did see him once before for about two minutes when I was in the hospital. They billed my insurance company $177 for those two minutes. Thinking back, it might have been only $80. Still, I wish I could get paid $40 a minute just for asking a couple of questions.

Oh, yeah, I only got 6 hours of sleep last night. That has been happening since I restarted chemotherapy. So, I complained. I NEED chemicals to help me sleep. Dr. D., who reminds me of Himmy, my son’s diabetic, incontinent cat, told me that as an “old man” I don’t need more than 6 hours of sleep. WTF? Nothing was done. They don't even know the sleep meds that were prescribed for me.

As I said, who listens to the patient? Now I know how Heath Ledger died!

I’m going to quit here, tonight, and see if I can’t get some sleep. I’ll be back about 3AM. :- )

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Seek First To Understand…

2008-01-27T18:23:00.000-06:00

…Then to be Understood.

Back when I was in college, we had a poster on the wall of our dorm room that said, “How can a man live knowing that he is not heeded?” Or words to that effect; college was a long time ago.

Everyone likes to be understood, which is why I took so quickly to Covey’s 7 Habits. They included the habit defined in my title; “Seek first to understand then to be understood.” So, I knew what I had to do first. :-)

In one of her recent comments, Sunni convinced me that she understood about one of the side effects of chemotherapy; lack of taste.

One of my nurses said that a patient had told her that eating anything while on chemo was comparable to eating a box of Kleenex. While never having eaten a box of Kleenex myself personally, I could immediately see the person’s point. I understood, trust me!

I’ve had two, count ‘em two, toasted Velveeta cheese sandwiches today, along with a fried egg. Without too much pain to bother me! I’d rather eat and suffer a little than not eat at all, I guess. But the taste just wasn’t there. It wasn’t Kleenex time, but it certainly wasn’t the bright vibrant taste of Velveeta and butter, either.

I haven’t always had the pain with eating. That was what got me into the doctor in the first place. My usual problem was either what Sunni described her mother went through; the varying degrees of the lack of taste, and the lack of appetite. During one of my lack of taste episodes I developed a dish that got me through quite a few meals that I might have otherwise passed on. I told one of my nutritionists about it and that I’d have to post it so that others might read about it and try it for themselves. So here it is. I call it my:

Cheesy Cream of Chicken Raman Noodle Egg Drop Soup!

Start with a package of Chicken Raman Noodles and prepare it according to the package.
Add ½ to 1 teaspoon of chicken bullion granules for MORE FLAVOR.
Add a dash of Garlic pepper, again it adds flavor.
Add a teaspoon of dried cilantro to help get rid of toxins that shrinking fat cells will loose into your system. No taste gain but big benefits anyway.
Add one can of chunky chicken (similar to a can of tuna). If you want/need more flavor add the liquid and all, otherwise drain the can, and just use the chicken.
Add one egg and stir into liquid.
Add two slices of Velveeta cheese and stir. It makes the “cream” and the “cheese” of the name come true.

It makes about two cups of “soup” and contains probably half the protein and calories one needs per day during chemo. The nutritionist liked it!

And, this soup has a lot of flavor! The only thing that I didn’t add was chili peppers of some sort. :- D

I don’t know if I could eat it now. They tell you not to eat your favorite foods during chemo, because you will come to hate them for their “lack of taste.” I’ve eaten out at McDonald’s, some of the things I used to eat before, and can’t believe that I actually used to eat food that tasted so bad.

So, you can’t trust my taste buds just now. Maybe next year.

Robin, the Hampster Dance just came on the MP3 player. Do the kids still like it? Or are you all burned out on it? :-)

The next song was Bonnie Raitt’s No Way to Treat a Lady! LOL The Hampster Dance wasn’t THAT bad.

~~~~~~~~~

I’ve made a few changes to the blog. I replaced the Esophageal Cancer ribbon that I had found on line with one that Nettie had put together. See, she has more talents than just quilting!

I’ve also started to add links to sites that I like. I had asked the kids to remind me years ago and they forgot. OK, maybe not years, but at least months!

Anyway, look for those out on the left side.

~~~~~~~~~

I was out trying to shovel snow earlier, but was so-o-o-o tired. Dug out the blower to get rid of most of the snow. So I slept this afternoon, but I’m still not as mentally sharp as I’d like. Can you tell?

And tomorrow is another round of chemo. Wish me luck!

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Another Victory,…

2008-01-26T20:00:00.000-06:00

…no matter how small, is still a victory.

I woke up way too early this morning, around 4AM and on a Saturday too, so I jumped online for a while. Finally got back to sleep about 7ish and slept until 9 or so.

I’m wondering if I shouldn’t be trading off on my sleep meds, every other day or week or something. Maybe I’d sleep better.

~~~~~~~~~

But my day went pretty normal until the afternoon when I had company. My friend, Teo, and his lovely six-year-old daughter, Angelina, stopped by to cheer me up. I served him the Jule01 beer I had received from my sister and B-I-L for Christmas, since I am allergic to something in beer and wine. But “don’t cry for me, Argentina!” Southern Comfort and I get along just fine, thank you, along with his friends Ron Bacardi and Jose Quervo! I just haven’t had a chance to “talk” to them in a while. ;- (

BTW, C&R, Teo said it was good, but sweet, like it was made with honey.

So, while Teo and Angelina were here, I dug out some snacks; almonds, cashews, and something like Cracker Jacks; I can’t think of the name right now. So, while they were snacking, I checked the time, made sure I had taken my pain meds, and tried a couple of handfuls. Although I did develop some good belches, which 'shocked and amused' Angelina, I didn’t experience any pain!!!!

Based on that experience, after my next dose of pain meds, I opened a can of clam chowder, the white variety, and tried that, while in the tub! You ever notice how clams are like little rubber erasers, especially when you’re trying to chew them up thoroughly?

The angles are all wrong for me to “express myself”, to burp, while lying down. So, I had to wait until I stood up to get rid of the gas, but that meant there was no pain again to force me to vent prematurely!!!!

Things are definitely looking up.

~~~~~~~~~

BTW, the photo of my chest with the area diagrammed where they are irradiating me has always bothered me. I just figured out why. The photo had been taken in a mirror, so is actually reversed 180 degrees. The mass of the tumor is on my left side. So, I just went back and edited the pic for an accurate representation. Sorry for any inconvenience.

~~~~~~~~

I don’t know if we’ll be going to see Cloverfield tomorrow or not. Ben has to work Sunday, as well. I’ll have to wait and see.

Other than that, it’s been a quiet day except for the rumbling way down deep inside.

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Chocolate Cayenne Truffles

2008-01-25T19:36:00.000-06:00

OK, this is where I got my recipe from for my famous, or at least infamous, Trufa de Chocolate y Cayena. It is a bit on the “warm” side for most folks, but the chocolate does “smooth out” the heat.

~~~~~~~~~

I stopped at Bed, Bath, and Beyond today after RT, looking for a lotion applicator. Didn’t find anything worth mentioning. So, the search continues.

~~~~~~~~~

That meant that I got home a little later than normal and for some reason, I couldn’t fall asleep, even under my new quilt. So, I’ve been up all afternoon! Don’t you just hate it when that happens?

But I guess my lack of an afternoon nap was offset by how good I felt upon waking this morning. I wish that I could wake up every day feeling like that.

~~~~~~~~~

I was only partially kidding when I complained that a side effect of one of my new anti-cancer drugs was stomach pain. I don’t know now if it’s the tumor or the drugs that they have me on that is causing my stomach pain. But I think that the stomach is getting better. Then again, I’m on pain meds as well. It could be just the hydrocodone talking.

Ah, life in the fast lane!

Not much to say today so I’ll cut this short.

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

My Sudoku Quilt

2008-01-24T21:22:00.000-06:00

I’ve been asleep most of the day; it helps with the fatigue. And right now, while I can sleep, I have been taking advantage of it. Besides, I don’t feel the side effects of the chemo when I’m sleeping. I’m still waiting for the radiation side effects to kick in.

But then, while sleeping, I don’t get a whole lot done, either.

~~~~~~~~~

I’ve started to use a lotion provided by the Radiation therapists to be proactive with my skin care. But I find I have trouble reaching everywhere to apply it. There must be some sort of applicator that can allow me to apply lotion all the way round my chest and back. Anyone have any ideas?

~~~~~~~~~

And don’t forget about that Name That Tumor contest!!

~~~~~~~~~

My son, several years ago, got me a Sudoku program for my little pocket pc. As I’ve said here before, I love Sudoku. It’s a logic puzzle that’s very simple, but can require great thought. It’s taught me a lot about thinking.

The pocket version of Sudoku includes the ability to change the numbers into colored tiles. For some reason, for me and my chemo brain, I can run through an easy game of Sudoku using the colored tiles in as little as 4 minutes. Using the numbers, it takes me almost twice as long; different part of the brain involved, I guess.

So, today there’s a knock at the door; the postman had left a package from Nettie! I was expecting something from her; she had said in a comment she was sending something to brighten my day, my way.

Well, she did, and it did! Nettie sent me a quilt! And that’s even after I found errors in her “masterpiece.”

I opened the box, pulled out the quilt, and was stunned. I didn’t know what to say, which is pretty unusual for me. The first words out of Ben’s mouth when he saw it was, “That’s pretty!” And I couldn’t agree more. And I didn’t even think of “inspecting” it!! :-)

That’s when I realized that it was in the form of a Sudoku puzzle, correctly solved BTW, with brightly colored tiles. I don’t know if that were intentional or not, but I just LOVE it. I do love the bright colors, as well. I’m sure that you must have noted the bright Mexican blankets in some of the photos of the dogs and me.

So, I had to take a picture of it to share here, and immediately after that, I straightened up my bed and put it on top where I’ll always be able to see it. I slept under it all afternoon.

Thank you, Nettie! You don’t know how much this means to me.

My friend, Nancy, called to see how I was doing tonight, so I told her about the quilt. Her husband, Rawley, had been my best friend and hunting buddy. I think I liked him so much because he was the older brother I never had. But, in addition to that, he had what I just call a “good heart.”

Talking to Nancy was when I realized that Nettie and Rawley were quite similar; Nettie has that same “good heart” quality. I wish that I were more like both of them. Someday, maybe I will be.

So, Thanks again, for your beautiful and generous gift. I think this is the brightest quilt that I’ve seen you make. I love it!

Kunolunkwa!

And Two From Column B

2008-01-23T19:27:00.000-06:00

Tired today. Very tired. I only got about six hours of sleep last night, even with the sleeping pills. But at least I didn’t end up like Heath Ledger. What a shame! I’ll always remember him with his ink-stained teeth in The Patriot whenever I think of him.

But I almost napped this AM before my appointment, and slept three hours after I got home.

~~~~~~~~~

BTW, my last meeting with Dr. P. before chemo on Monday had him ask if that had been my sister with me the last time we had talked. I said yes, her and her husband from Denmark. He didn’t say anything else about it. ????

~~~~~~~~~

I started to be proactive with my skin care, so I dug out my vitamin E crème that Amy likes so much and applied some today. When I got to the treatment room I asked about skin care and where the beam was actually going to affect my skin.

The technicians there, three ladies named Amy, Amy, and Paula (just to be different), are great! They’ve always been cheerful whenever I was there. Today I complimented them, Amy and Paula, on how well they work together. Great communication, very fast, and fussy. When you’re going to be running all that radiation through my body, I want you to shoot straight, and be fussy about setting up the target, ME!

BTW, here’s a couple of links to images of the equipment that they are using.
They can image and treat with the same piece of equipment. And they can modulate the beam size to shape it so that they can miss the important stuff and dump as much radiation on the stuff that needs it. Sub-millimeter accuracy!!

So, the techs set to work and diagrammed for me where I’ll need to medicate myself at least four hours before treatment. I thought that you might like to see where and how big an area we are talking about so I took a photo when I got home. I look like one of those photos explaining why you don’t leave the kids at home with magic markers. But, that’s the size and shape of the tumor. They’ll adjust the aperture differently for the treatments from the left and right sides. I can barely touch the spot they’ll use on the right. The left isn’t too bad to get to.

~~~~~~~~~

I did take on Nettie's challenge and found several panels in her quilt that had what I thought might be errors in them depending on her standards. NEVER ask an old QA guy to inspect your work!! I sent two emails but she hasn't replied yet. I hope that she's not mad at me! :-D

~~~~~~~~~

I thought that since I was hungry today that things had gotten better. Apparently not. I stopped on the way home and picked up a pint of Chinese chicken noodle soup and an egg roll. I barely got an eighth of the soup in me when the tumor started acting up. That ended that meal. Back to the Ensure.

We should name this tumor! We could have a contest with prizes to the winners and runners-up. I could send you pieces of whatever we name him perfectly preserved in alcohol for you to put on your shelf. What do you think? I wonder if I can set up a poll on this software.

In the mean time, I started the “Late Diarrhea” phase of my chemo. I had two choices, early within 24 hours, like almost immediately, or later after the 24-hour period was up. I didn’t want to make a choice, but apparently that wasn’t in the game plan. As I said, a battle of side effects.

In addition, while lying in bed, I did get a sharp stabbing pain in the lower left back, above the hip but below the kidney. This one might be the back pain they warned about. We’ll see how things turn out tonight.

And my taste buds are starting to fade, I think.

Kunolunkwa!

Edit Note: The picture of my chest had been taken in a mirror so I had to reverse the image to portray my tumor accurately. 1/26/2008

I Told You So!

2008-01-22T20:22:00.000-06:00

This is just great. It seems that one of the new cancer drugs, Carboplatin, can cause stomach pain, loss of appetite, severe diarrhea, weakness, and hair loss. I’m gonna lose MORE hair?

And of course, I should consult with my doctor before taking vitamins, minerals, and other herbal supplements. I can’t receive “live virus” vaccines. And I should avoid the sun—there goes my SAD relief. Nettie, can you get your package back? You should have seen the burqa I had to wear just to blow some snow today!

I may also experience temporary vision loss, difficulty walking—I may have experienced this already right in front of Ben, yesterday—and pain in the back. Now, I know I already experience this. It started yesterday but I believe that it is my right SA joint and not kidney pain. I believe that I sat wrong in those lousy recliners they have.

The Irinotecan may also cause severe diarrhea and stomach cramps. It may impair my thinking and reactions. “Be careful if you drive or do anything that requires you to be awake and alert.” How’s that for covering your butt?

~~~~~~~~~

Some good news on the eating front, I did have a 10.5 oz. can of Chicken a la King for supper tonight without much pain; with a lot of rumbling and my “hiccups” as an after dinner entertainment treat. And my last pain meds had been about 11:00! At this rate, I’ll be eating solid foods by the weekend. But by then I won’t be able to taste them.

~~~~~~~~~

Note to Ben: We were discussing the body tissue parts I have been bringing up. My thought had been that it was related to the mucositis I had been experiencing. Here is a quick explanation of the time lines involved: “Mucositis due to chemotherapy typically begins 3 to 5 days after the start of therapy, peaks at 7 to 10 days, and slowly subsides over the next week. Mucositis due to radiation usually appears toward the end of the second week of treatment, plateaus during the fourth week of radiation, and may persist for 2 to 3 weeks after treatment is over.” We’re talking mid-March, here.

So, two days of radiation therapy would not be responsible for any digestive tract lining sores, yet, and therefore not responsible for any body tissue parts produced recently. My experience with chemo is consistent with the timeline, however, and those “parts” could have been the result of mouth sores. But with this showing up now, I don’t even have a guess what they are, and where they’re coming from.

One must remember, too, that mucositis can involve the digestive tract lining from the mouth to the anus. My tumor is part of that lining in the stomach.

~~~~~~~~~

I finally ran across an epidemiological study; this one for the Irinotecan. No wonder my prognosis is so low. In one study alone 7.3% of the patients on the Irinotecan died within 30 days of the last study treatment. 9.3% of those on Irinotecan and 5-FU (flurourasil, remember the pump?) died. That’s just the possibility of the side effects of the drugs killing me. We’re not talking about the cancer, yet, just the treatment of the cancer.

Can you see why I’m concerned when my doctor seemingly ignores my concerns about my symptoms? This apparent lack of concern about this body tissue comes from the folks who missed a second, potentially more dangerous PE: my blood clot in my right lung.

Back in my Quality Management days, I used an illustration that I’m about to use here. Imagine you have a machine with 100 parts. Each part has a reliability rate, a survival rate if you will, of 99%. It will fail only 1% of the time. And this machine needs all 100 parts to be working in order to run. Simple, right? How often do you think your machine will be running? 99% of the time? 75%? 50%? If my math is still any good, your machine will be running only 36.6% of the time. That’s a 36.6% survival rate!!! Despite each part having a survival rate of 99%, by the time you add the rates of all the parts together, your machine will be broken down twice as much as it’s running during the week!

Now imagine that one anti-cancer drug has a “failure” rate of 7.5% And, I’ve been on five anti-cancer drugs now. I don’t know the failure rates of all of them, but I imagine that they’re comparable. That means that I'm down to a 67.7% “survival” rate just with the drugs alone. And I still have the effects of the cancer itself to consider.

Can you see why I’m not a big fan of Conventional Medicine?

~~~~~~~~~

Oh, the VLCC changed my chemotherapy routine on me and didn’t tell me. Of course, I hadn’t looked at my appointment card, yet, either. I would have gotten there, but not without some discussion.

I did go on line at their website yesterday to check on my appointments, but for some reason the computer lost ‘em. Probably correcting my name changed the whole system. The email I sent them on their message system asking what happened to my records was returned to me, via email, with my profile info, but no other response. ??? I'll check later this week.

Anyway, I had been getting chemo every three weeks. With the new drugs, I will be getting chemo once each week for three weeks with one week off. They had told me to come back the 28th, but the 28th of January would have been way too early for another treatment according to the old schedule. So, I assumed the 28th of February. If I hadn’t gone looking for my “ten-day” appointment on-line, and then in person, I might have missed my next chemo, even though I would have been right next door.

You would think a change in routine like that might need to be communicated to the patient. Especially, chemo patients with a possibility of the side effect of “chemobrain.” Especially after I’ve told them that I suffer from chemobrain. And the new drugs I’m taking “impairs my thinking.” Ya think?

Oh, I laugh and joke, and try not to show how much it does affect me, but THEY should know from their experience by now. And then the doctor gets his nose out of joint when I try to make sure about things coming up. *Sigh* Ya just cain't win....

And I have an appointment with Dr. R., the oncologist, tomorrow that I hadn’t heard about until today.

Do you guys get treated like this with your doctors, or is it just me in my situation? Am I being too critical about wanting to know things ahead of time? I realize that I’m not working, but I just might have other plans for the day. Just talked with Teo and he plans on stopping by some day, soon. I’d like to be home when he gets off work, picks up his girls, and then stops by.

~~~~~~~~~

On a lighter note, Nettie continues to amaze me with all the stuff she gets done. But occasionally she can miss a deadline.

Nettie is a “dyed in the wool” quilter, if I can put it like that. She makes quilts for folks. I could probably spend a half hour talking about the quilts she has made for folks. They remind me of the quilts my grandmother, the German married to the Norwegian, used to make.

When we went to visit the grandfolks in the new house my grandfather was building, before they had the insulation up, they used to put me in the northwest corner bedroom. The wind comes from the nor’west so in the wintertime that room was the coldest in the house.

But, grandma had plenty of quilts. I remember having so many quilts on that bed that I had to fold down the corner of each one, slide under all those quilts, and then return each quilt to the proper position one by one, and then pull my arm back under the quilts. They were too heavy for a young kid like me to move all at once.

I slept so comfortably like that, that to this day, I like to have the heat to the bedroom turned off, and will quite often, in the winter, open the window and crawl under my heaviest sleeping bag on the bed. If it weren’t for my insomnia, I’d sleep just like that young boy, so many years ago.

But, to get back to my story about Nettie, I’m posting a picture of her latest creation, a king size quilt meant for her daughter and her husband for Christmas of 2006! I can’t even imagine the work that would go into making something like that. And to do it on her schedule. *shakes head*

So I had to show it off here. See what my friend can do!! And did you notice that no two of the square patterns are duplicated? Each one is unique. WTG, Nettie! You have reason to call it a “masterpiece.”

~~~~~~~~~

I did tell someone "so:" I just don’t remember who.

Being of an enquiring nature, I wonder about a lot of things. I’ve always wondered about stories of cats that were purring when they died, or cats that will climb right up on their human, lie down on the spot that hurts on their human, and then proceed to purr their little hearts out. I’ve always thought that there had to be a reason WHY they purr. And not just because they're happy.

So, some years ago I ran across an article similar to this one that discussed how the exact frequency of a cat’s purr would heal bones faster. My thought was that somebody was going to make money off that little bit of knowledge. I was right, in a manner of speaking.

There is a machine out, the TurboSonic Vibration Therapy machine, that apparently can do for the whole human body what cats can do for themselves.

But the history goes back for several decades. The Russians apparently were doing work on the subject first. Then the Germans built a mechanical machine. Then the South Koreans developed one without the mechanics and a whole lot quieter.

The machine operates within the range of 6 – 45 Hertz, while cats purr between 20 to 150 Hertz. But their main frequencies are 25 and 50 Hertz. BTW, Hertz is a fancy way of saying cycles per second.

With a price tag of over $12K for the TurboSonic, I wonder if a regular vibrator will work. Can somebody measure the frequency and let me know? :-D

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Read My Other Post From Today First…

2008-01-21T22:21:00.000-06:00

…before you read this one.

I decided to take a long hot bath before bed. Tubs never seem to fit me right. I almost always think of Procrustes when I take a bath. But WTH, I remember taking baths in a square wash tub in the kitchen up until I was 10. Yup; I’m that old. But I was also a lot more limber then.

While soaking and staring at the wall with my feet up on the wall, I noticed the big toe on my right foot doing a little dance number. Just the big toe on the right foot! Now, I don’t know if it was the rumba or the samba, but there it was swaying—OK, more like jerking—back and forth about 1/16th to 1/8th of an inch. And I didn’t even feel it!

That reminded me about pointing out to Nurse Diane today that quite a few small muscles in my body were just a’twitchin’ after hanging a bag of the cancer drugs.

THAT reminded me that I hadn’t had a chance to research the SFX (side effects) of the drugs “which we are about to receive. Amen” So it could have just been the drugs talkin’ earlier.

I had to stop to get my rat poison refilled; they had doubled me up which meant I used it up twice as fast. I’m a big rat. While I was out that way I stopped in at my health food store and “refilled” my IP-6, as well. They gave me a magazine to try and sell me more products. And for me to learn a few things. And I did.

They talked about SAD: seasonal affective disorder. SAD is usually due to a lack of sunlight. And boy, I haven’t been getting’ the sun like I used to. So earlier could be in part due to SAD, as well.

Before I took the swing down, I was out usually several times a day. Even though I try to avoid the sun, I’d usually get a pretty good tan. I realized that I’m so white—how white are you—I’m so white even my AmerIndian and Mexican friends wouldn’t recognize me now.

I ran into a friend from The Sweatshop a few weeks ago and he didn’t recognize me. I thought it was because I didn’t have any hair or a beard. Now, I know why!!!!

Even when working, I’m in and out of the truck getting sun at least on my face and hands all day long. Now, I’m lucky to see the sun. It's still that big bright yellow thing in the sky during the day, right?

And, yes, Amy; I do realize that I would get a lot more sun if I checked into the H. Lee Moffit Cancer Treatment Center. Thank you ahead of time for pointing that out.

So, starting out first thing in the AM, I have three, possibly four, things that I NEED to do to change things. I’ve been way too—what’s the word—“passive?” Yeah, I think passive will do for now. Let the anger motivate you, not consume you!

BTW, I did notice an “I told you so” item of two that I’ll talk about later.

Go to sleep! And sweet dreams!!

Give a Kid a Hammer….

2008-01-21T20:12:00.000-06:00

…and the whole world’s a nail!

If you recall from my post yesterday, I was experiencing pain upon eating and was "bringing up" pieces of body tissues. I said that I’d call in today to find out what’s going on, and I did.

Want to know what’s going on?

So, would I. As it is, I went through another, unscheduled, chemotherapy session!

Now, I can understand the nurse not wanting to look at my body parts. She doesn't really need to; they have experts for that. (Although I do wonder about a squeemish nurse. :-) )But the doctor barely looked at the container, much less at the tissue. I explained what was happening and that I thought the sources could be three in order of likelihood: I was actually coughing up lung tissue, I was bringing up bits of my esophageal lining, or I was bringing up bits of the tumor.

“It is ‘probably’ the tumor.”

WTF? “Probably???” Two days of radiation and I’m bringing up bits of tumor already?

As of 2002, I believe it was, doctors were the number three cause of death in the U. S. Ya think?

And with a one in ten chance of surviving this cancer, you would think that the doctor would be a little more conscientious. But there I go thinking again. It means a lot to me; to him, I’m just another source of revenue for the hospital.

So I underwent, with no preparation at all, my sixth round of chemo and added two new cancer drugs to my list; Irinotecan, and Carboplatin, similar to the Cisplatin I was taking.

So I got home about 5:30, checked a few things on the computer, sipped my evening meal (yes, it still hurt and, no, I wasn’t able to take my pain meds before eating ‘cause I’m saving that for when I really assault my stomach with my nighttime meds), and basically stared off into space for over an hour. I didn’t stir until I remembered that I promised Nurse Martha that I’d stop by tomorrow with a copy of my Chocolate Cayenne Truffles. So I printed out two copies; Nurse Kate might want one as well. She likes it hot!

There I go staring again.

I’m reminded of Jean’s memorable line in Billy Jack, “I just don’t know anymore.” Where’s Billy Jack when you need ‘im?

When I set up my monitor with a TV antenna half a year ago, just to have a working TV around, I remembered seeing all the Cancer Treatment Center commercials for the first time. “Before we came to the Cancer Treatment Center, her local doctor gave her 4-6 months to live. That was two years ago!” Maybe there was a reason.

You know what they call the doctor who graduates at the bottom of his medical college class?

Doctor!

In any case, kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

A Cold Sunday

2008-01-20T19:21:00.000-06:00

Since Warren’s timely warning that Cloverfield wasn’t playing in town this weekend left us with little to do, I’ve spent most of the day sleeping. BTW, I did note that Cloverfield did very well at the box office. Maybe it’s better that we go next weekend.

And I did figure out why I’m sleeping so much, lately. Several of the meds I’m taking can make one drowsy. Drowsy + not doing much of anything + staying in a warm bed = sleep. “Elementary, my dear Watson!”

~~~~~~~~~

OK, so I called a nurse last night to ask if my stomach pain could be caused by the radiation therapy. A “reality check,” if you will. She said she had no information to suggest that it was. She suggested calling the doctor, which I will do tomorrow.

~~~~~~~~~

Today, after not having had anything solid to eat, just sucking bottles of Ensure, I noticed what appeared to be food particles in my mouth. But, I’ve brushed my teeth and flossed, and it’s been since Friday, or even earlier, that I’ve eaten anything that remotely looks like what I’m finding, my only conclusion is that the particles are part of me.

I wonder if I’ve been coughing up my lungs.

Actually, I’ve experienced this before while undergoing chemotherapy. I would get the mouth sores, and when they started to heal, these chunks would show up. I thought that it was just dead tissue from the sores sloughing off. But, I’m not on chemo, and I don’t have mouth sores. So where are the chunks coming from? My tumor? My esophagus? They do seem to show up after a good cough.

I emptied an allspice spice container, put a couple of cc’s of alcohol in it and started depositing my “samples” in there. I’ll take it with me tomorrow to the VLCC.

Am I too observant?

Geez, I really hope that you aren’t eating when you read this…

~~~~~~~~~

I finished reading Heinlein’s Glory Road today. As I mentioned before, it has been decades unfortunately since I last read this particular book. But I definitely see how he influenced my worldview. That’s not to say that I always agree with him. But he did have considerable influence.

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Back On The “Sauce”

2008-01-19T18:34:00.000-06:00

Boy, does that have a bunch of meanings. I may need a disambiguation page like Wikipedia.

First, I’m back on the Ensure. It just hurts too much to eat. It even hurts to drink the Ensure—it doesn’t sit right in the stomach, and I checked the expiration date—so I started taking one teaspoon of the hydrocodone/APAP "sauce." That means 2.5mg/167mg. Not much, but I’m hoping that it helps. I don’t want to get back into that other issue! Not that I had a problem; I just don’t want one to develop.

It occurred to me today that lying in bed in a semi-reclining position—I’ve been sleeping most of the day—might not be the best thing for me. Something to do with the geometry of the digestive system, the tumor, and the introduction of food/liquids into the alimentary canal. I mean, if my cancer developed as a result of acid reflux, this is the position I developed it in. How I’m going to change that, other than sitting bolt upright, is beyond me right now. But it does give me something to think about. I don’t have the strength to sit bolt upright comfortably for any length of time. Maybe just upright in the recliner?

I’ll make the proper inquiries/notifications on Monday.

BTW, I’m back on the peppermint tea “sauce,” as well.

I’m finally getting around to getting my laundry done, too. Not that I had a lot. When you lay around all day in your pj’s you don’t need to do too much. But now that I have to go to the VLCC every weekday does mean more clothes to wash.

And some good news, my cough is changing; it’s getting more “moist.” It’s not as dry a cough as before, and it does seem to be lessening somewhat.

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

RT, Day 2

2008-01-18T19:59:00.000-06:00

I actually felt the beam or whatever it is hit my left side today! Weird! I could have used a pointer and matched the feel of the beam and the feel of the pointer. I bet they would have matched. It didn’t hurt; it was just sensation.

So, I really, really concentrated on the chest and right side treatments, but didn’t feel a thing. Nurse Paula said that they had delivered the exact dose they intended; they had a gauge on me.

I pay attention more than most folks, I guess. Sometimes I can “taste” the dye they use for CT scans. But then, I’m also looking for something. If I weren’t, I wouldn’t have noticed it.

~~~~~~~~

Which brings me to my final hospital bitch.

If you check Figure 4 in the photo essay of a Port Access, you will notice that Diehl Martin mentions a chemical spray they use to numb the skin prior to accessing the port. The hospital doesn’t use it!

That poor port has been accessed countless times by a needle that isn’t exactly a small gauge. It can get tender!

Now, there are stories about how my grandfather, the Norwegian, could roll up his sleeve and stick a knitting needle in his bicep deep enough that it stood straight up.

I’ve sat perfectly still while my mother slit my skin with a razor blade and probed with a needle to remove an old bullet fragment that had worked its way to the surface and was causing some discomfort. Since she doesn’t believe in alcohol except to sterilize things, I didn’t get any anesthesia prior to her surgery. 8- )

I’m no stranger to pain. I’ve been shot, stuck, cut, and sometimes I’ve done it to myself. And there were even a few times when it was on purpose.

But I don’t like to have to endure pain when I don’t have to. And if it is possible to feel a beam of radiation, imagine what a needle feels like!

There, that’s out of my system. Maybe I can let it go….

~~~~~~~~~

Dammit! Amazing Grace just came on the mp3 player. Bagpipes. Damn, damn, damn!

My best friend and hunting buddy, Rawley, died nine years ago, next month. At his request, we played that song at his funeral. That exact recording.

Today wasn’t the day to hear that! When does the pain of loss go away?

~~~~~~~~~

I don’t know if it’s the radiation or just the progression of the disease, but I have to be very careful when I eat. I do have some pain but it isn’t too bad. Yet. ;- )

The gas in my stomach backs solid (and not so solid) food up against the tumor, which then blocks the sphincter, so I can’t expel the gas. The tumor gets compressed and doesn’t like it. I’m waiting for the time when I try to regurgitate the tumor. I can’t say, “regurgitate,” can I? No, it means "to cast up again." It was never “up” in the first place. Whatever the word, I’m waiting for it to try and make an appearance.

BTW, what does fruit have? Fiber? Bulk? I’m finding out that it’s not a good idea to eat much fruit. (As I reach over and snag a grape; the alcohol comes later. Again, kidding, :- ) although I’m wondering if it wouldn’t help with the pain.) Looks like it’s back to the Ensure for a while.

~~~~~~~~~

Ben and I are planning on seeing the movie, Cloverfield, this weekend. I’m looking forward to it. Maybe I’ll pop a movie in the computer and watch one now. Take my mind off my troubles.

Later! Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith

Radiation Therapy, Day 1

2008-01-17T20:42:00.000-06:00

From the title you should gather that today was my first day of radiation therapy, and you’d be right! I’m sure that y’all have had X-rays done. That’s pretty much the procedure. Except in this case, the “head” of the machine does move around me to several different positions to “zap” me.

I got a chance to talk to the nutritionist, Nutritionist Lisa, who is taking the place of Nutritionist Amy who is moving on to greater challenges in the hospital. Looks nothing like N. Amy. I don’t know if I mentioned it, but I ran into another Nutritionist Amy on the hospital-side of things when I was stuck over there for several days last week. You remember. Well, the hospital N. Amy looked a lot like the VLCC N. Amy only with shorter blonde hair.

Now I have chemobrain. My memory can play tricks on me. So, I was confused for a few minutes when the hospital version walked into the room. When I explained my confusion, she said another patient had just told her the same thing!!

Anyway, N. Lisa and I had a great talk about my nutrition. Even though I’m not eating the way that they would like, I’m not losing any weight so whatever I’m doing must be working.

I learned a few things from her and she learned a bunch from me! :-) She didn’t even know about the “polymeal.” What kind of nutritionist doesn’t know about the polymeal? Actually, I’m surprised that Wikipedia even has an article on it.

As an aside, please note that the polymeal article mentions that alcohol reduces clotting! Since that seems to be an issue with me right now, I’m gonna hafta start drinking, again!!!! Since I’m allergic to the red wine mentioned, here come the grapes and Southern Comfort, or the Jose Cuervo, or if I can get a supply of it, the Cubano Anejo!

(It was a joke! Or at least, I think it was a joke. I could be wrong. I have been wrong before, you know!)

BUT, while we were talking nutrition after my radiation treatment, I started to get my “hiccups.” I always thought that they were a SFX (side effect) of one of my chemo drugs. So, since I hadn’t just had chemo, I wondered out loud what could be the problem and answered my own question. I realized very quickly that the “hiccup” was my tumor responding to getting kinda sick today with all the radiation passing through it. Just like it gets sick after all those chemo drugs start to make it sick. Pretty quick, huh? I still got it!

Maybe shortly my tumor won’t be giving me any problems about sharing my stomach with food!! :-D

~~~~~~~~~

I finally, finally, finally got some of my imaging today that I asked for how many months ago and that Dr. P said that he would get for me, when one of my kids was with me as a witness in the office. The files say they were written on 12/14/2007. I got it slightly more than one month later. It took over a month to get to me. You can tell how high I rate, as a customer, on their priority list.

I’m going to have to learn a new software program to do anything with the images, but, Good Gorram, was the initial tumor HUGE!

The other part of my learning curve will be to remember my anatomy! Some of the things I’m seeing aren’t the tumor, but actually things like the heart and the bladder. Yes, I do know which is which. But it’s just strange poring over images of my own insides!

So, Ben and I will work on that over the next couple of days.

~~~~~~~~~

Just to correct my daughter, the anthropologist, but since AmerIndians are more of my specialty than hers, I’d just like to set the record straight.

She mentioned that the T-shirt that she and Ben had gotten for me had four Indian tribes named on it. They weren’t tribes; they were actual Indian names. Geronimo, who was often considered a chief, was in actuality a shaman and medicine man. He was also, probably, the fiercest warrior the Apache has ever produced. His last wish was to return to his homeland, but he died a prisoner of war in Oklahoma, February 17, 1909.

Chappo was also named on the t-shirt. Chappo was a son to Geronimo, while Perico (Spanish for parrot) was brother to Geronimo. Chihuahua, also named, was also a member of their merry band that fought off over 5,000 American troops for over 2 years.

Now you know why those four were mentioned with regard to Homeland Security, and why I like the shirt so very, very much. It even has my blood on it now from that Lovenox needle with the bent tip. Which reminds me, I gotta do some wash!

And, yes, I had to look up the names. My memory isn’t as good as it once was, but I’m just happy to remember that two of the names were associated with Geronimo.

BTW, Geronimo’s youngest son was named Naiche. That name is very close to the Cheyenne word for “thank you” –nia’ish, that plays a part in the movie The Last of the Dog Men. I had briefly considered the Apache spelling as a name for another dog, if I ever got another. My first was a black lab that I named Otsitsi (sounds like the French name, Gigi, O’gigi). I miss her!

Hmmm? Oh, it’s the first Oneida word I ever learned-BEER!

~~~~~~~~~

Before I got home today and found Amy’s post on the blog, I was thinking about something that she had said in a comment a while back.

I have mentioned before that I have noticed a personality change in myself over the course of my disease. Normally, I try to minimize the “visible” changes as much as possible. But today, since I was out for the first time in a while and that’s usually when I notice the difference, I started to wonder if the change is getting noticeable to the folks who know me best, my kids.

So, Ben and Amy, are you starting to notice the change? Any specifics or just a gut feeling? Anybody?

~~~~~~~~~

I did do some shoveling today. More snow blowing than shoveling, but it quickly tuckered me out and started a coughing fit. I feel like I should be doing more, physically, but at the same time, I realize the need to husband my strength. It can create an internal dilemma. Maybe this should have gone in the section above.

I just heard a loud noise, the wind and snow are blowing and my hearing is getting poor, so I got up to investigate. Si, con mi pistola en mi mano! It wasn't time for Ben to be home so I had to check.

But now I’m back at the computer and coughing up a storm. Move, get tired, and cough a lot, or sit around and do nothing but play on the computer?

I have been drinking more fruit juice lately, usually V-8, and tonight when I couldn’t even eat the soup and rice I had for lunch, I ate some melon, pineapple, and grape chunks that I picked up at the store today. It hurt for a while, but did taste pretty good. And the melon pieces they put in those trays don’t usually have much in the way of flavor.

Amy, I also picked up the bruchetta “sauce” that I had seen at Woodman’s when you were here. It must be kinda like a “pico de gallo.” If I can figure out how to eat the bruchetta, maybe the pico de gallo will be next! Italian to Mexican! :-)

I can’t think of anything else right now. There’s still something else to bitch about from my hospital stay, but I can’t think of it right now. Maybe later.

Kunolunkwa!

"As a juror, I will exercise my 1000-year-old duty to arrive at a verdict, not just on the basis of the facts of a particular case, or instructions I am given, but through my power to reason, my knowledge of the Bill of Rights, and my individual conscience. When needful, I will judge the law itself." -L. Neil Smith