I have some unfortunate news.

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!

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

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.

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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.

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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.

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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

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…

…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.

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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

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.

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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.

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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

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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!

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…

…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????

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!

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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!

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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….

...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?

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!!

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

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.

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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.

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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

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?

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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!

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!

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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?

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

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.

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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

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

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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

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“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.

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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?

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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

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.?

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.

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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?

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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.

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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!

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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.

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“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!