Monday’s Chemo Rescheduled?

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

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

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

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

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…

…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

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…

…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!

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

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

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

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!

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…

…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,…

…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

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

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

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

"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 Told You So!

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…

…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….

…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

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”

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

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

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

Some thoughts to share....

Thanks Dad and Nettie for the feedback on my question. While I wasn't just talking about your venting on the blog, Dad, I understand that venting in real life serves the same purpose ;-). I know how stubborn you are, and I just don't want you to hesitate to ask for help or express your needs if/when you feel them.

If your insurance will pay for housing if you go to H. Lee Moffitt in Tampa, can I bill your insurance if you stay with ME ;-)!?!? Just think about it, we may be able to get you some income out of this deal, yet ;-).

Ronnie and Cuz (in the pic above with Dad) gave us each a Danish Christmas beer when they were visiting GB. They wanted feedback once we tasted them. Well, Mike and I shared that beer awhile ago, and I've been forgetting to share my thoughts. Now, mind you, I've never been a beer drinker, so my opinion isn't very experienced. I thought it was good, but a bit strong. The aftertaste reminded me a bit of soy sauce ;-). Mike said it was similar to some of the dark ales he's tasted before. It was very interesting, but not being a beer drinker, I wouldn't be chugging them anytime soon ;-).

On that note, I wanted to share a few pics from my trip home. Also, Dad, Cuz and Ronnie - please email me any pics you took while we were all up there. The first pic above is Dad in his winter PJ's, on the phone, with his stocking cap on. I just like the pic, so thought I'd share ;-).

Dad really enjoyed a T-Shirt Ben and I got him, and said he wanted a pic of it on his blog, so I'm FINALLY posting one. Here it is, Dad, enjoy ;-). It says, "HOMELAND SECURITY: [names of four indian tribes]: FREEDOM IS NOT FREE: FIGHTING TERRORISM." You can see the image for yourself. I'm glad you liked it, Dad ;-).

xoxoxo,

Amy

P.S. How did 1st day of radiation go?

"Thinking of You"

I got a card from the hospital today, wishing me comfort, peace, and hope. There were five signatures, three of which were HUCs. I had to look that up ‘cause I didn’t know what a health unit coordinator was. As it was, I didn’t recognize any of the names. It was a nice gesture, but it would have helped had I had contact with the people who signed the card. *sigh*

I was also hoping to learn the name of that nurse on nights! :-)

I started to make good on a promise elsewhere. I started to reread Glory Road by Robert Heinlein. I’m just about halfway through. I’m surprised by how much I’d forgotten although I’m remembering quite a bit. It’s funny what you mind forgets. Now, it’s been decades since I read this, but I can’t see how I ever thought that this book was a “juvenile!”

I had Ben mail some bills for me today. I did get up later and walk across the street so I guess I could have mailed them myself. I’m still moving slow with some pain in the right leg. Maybe another clot?

I still have the cough so it should be interesting tomorrow during radiation. And did I mention that I’m back on soft food? I guess that stomach tumor just doesn’t like to share its living quarters with solid food. So, back to warm soups.

Got an email from my HR person today. She finally took my advice about curamin and she says that it is helping some. I told her that she has to build up a level in her blood before it really becomes effective. I also told her to make sure she’s getting enough magnesium. That’s one “take-away” I’m glad I got from all this clinic stuff.

She also mentioned that her mother-in-law passed away on the ninth. They had told her that she had 4-6 months on the third of this month. At 78, I believe, it looks like she didn’t want to stick around for the fight. I do know the feeling after having been so sick for so long. Pero, yo soy testarudo!! I’m stubborn!! So I have that working for me.

Gonna stop now and try to get more reading in before Ben comes home.

"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

MHE 2

When we last left our hero it was going on the night of his first day in the hospital, he was tired having been up since 6:30AM to get to his appointment at VLCC early, so he could get to his PCP’s office at 8:30AM. And we know how that worked out, don’t we?

By this time I had hooked up the computer and was on line via an unsecured WiFi link. Because it was unsecured and the hospital could read everything I wrote, I didn’t visit my blog but contented to play at some other sites. In retrospect, I could have logged my impressions to a Word document for later posting, but that would have required thinking.

It took me so long to get online because the only outlets available were on the bed, and Nurse A. didn’t know if they could be used. She put in a call to the computer area, but they never got back to the customer, I mean the patient, with an answer. The nurse on nights had no issues with using the bed outlets and plugged me right in!

So there I was, trying to sleep and couldn’t! Nothing I tried would let me sleep without chemical intervention. And no chemicals were forthcoming.

Morning came and I was still trying to get some sleep. Nurse Lisa came in to get some blood and needed another nurse to have my port accessed. I told her that I’d been up all night. The night nurse—I wish I could remember her name, she was a cutie—confirmed my story. She told Nurse Lisa that every time she came in to check on me my eyes were open!

Dr. M—the new pulmonary guy, it was his third day there—came in later, talked with me, and said he’d order some Ambien for me for later in the morning. It never came!

So Day 2, Thursday, consisted of getting a chest X-ray looking for the source of my cough.

It was fun talking to the volunteers taking me to the X-ray department. I told them that I was the only member of the world’s smallest minority. That got them interested! So I explained that, as an individual I was the only one exactly like me. Then they laughed when I explained that they too were the only members of the world’s smallest minority of people exactly like them. I had them laughing, nodding, and agreeing with me in short order. It was fun! Made my sleepless day go easier.

Not much else happened that day that I remember. I kept the lights low and tried to sleep, but sleep never came. It was only when I was playing my music down low and attempting to sleep that I noticed that I might, just might, have dozed for a minute or two. Never for very long, I just missed hearing the entire song a couple of times.

Night came and I got my sleeping pill. Blissful sleep! I had them close the door so the hall noise wouldn’t disturb me, but it wasn’t necessary. I slept until they awakened me to do vitals and I went right back to sleep.

I had been awake, or almost so, for 39 hours!!!!!! The nurses were amazed that I was still functioning, and functioning as well as I was! 39 freakin’ hours because they didn’t pay attention to my personal meds.

Did I mention that I didn’t get all of my blood pressure meds? They were driving me nuts, not giving my meds on time, not giving me the meds I would have been taking at home—they gave me Prilosec instead of Protonix, so why do I need the more expensive med at home?—and not giving me my supplements, obviously!

Let me take a moment to describe how they had me trussed up. I had had my port accessed and fluids going in there. I had a large bore IV stuck in my left ante-cubital vein at the elbow joint. They had used it for the CTPA and had just left it there. I had monitoring telemetry leads stuck all over my chest. AND, I had a nasal canula piping oxygen into my nostrils going at two liters a minute! I was all set.

Considering I had heard a Code Blue on third floor ICU and an “intervention” in the room next to me, I was glad they were so worried about me!

Day 3, Friday--I slept in until they came in to take my vitals. Now, I don’t remember if it was this particular AM, but one of the night nurses did my lung sounds. She had me sit up and put the stethoscope to my back. But the first thing I noticed was that she wasn’t listening in the normal areas; she was way outside those. She didn’t have me take any deep breaths. I just sat there waiting for the command to “Take a deep breath” and it never came. She then proceeded to listen to my heart sounds. At least she got those right!

They came in early Friday to do an echocardiogram. I later found out that my heart is in good shape although I do have some very slight leakage from one of the valves. Considering I had at least one blood clot go through my heart, it could be just a chunk that got hung up and will eventually go way. Time will tell.

I had Respiratory Therapy (RT) come in and do a treatment where I breathe a mist deep into my lungs. It’s supposed to open up the passageways, or something. The only thing it did was make me lose control of my fine muscle motor skills. I tried typing into my HP iPAQ and couldn’t even hit the letters. It did make me cough more, as well!

Later Dr M. told me that a cough was a symptom of a PE. So why were they doing RT? Especially since later the RT folks came back with an Advair inhaler and got me started on that. I think that they were trying to sell me everything they could since I was there!

I had asked Ben to bring in a telephone cable since there was a data port on the side of the phone. I could use a dial-up connection to my ISP and be able to access my accounts with considerably more confidence than by using their WiFi setup. Unfortunately, I didn’t have my account info with me so that didn’t happen. Sorry!

Day 4 was Saturday. I slept well again last night with the sleeping meds. They got me ready to go home but forgot to send my Advair inhaler with me. Checking later, it’s not even listed on the list of meds that they had for me at the hospital. They had a new med listed, the cough med that they had me on, but they never put it on the list of Discharge Prescriptions. But I wasn’t feeling well; I had had a “stomach issue” over breakfast similar to my March 16 trip to the ER and it affected my whole day apparently. I had been eating just fine until then. I was even complaining about th elack of taste! But my lack of IP-6 due to being in the hospital might have had something to do with it. Don’t know.

Anyway, I wasn’t mentally up to the challenge of keeping the doctors and nurses in line.

Ben and I stopped on the way home to pick up the one tablet of antibiotic that I needed for the next day, and the sleeping pills that they had me on. I didn’t notice at that time that the cough med wasn’t on the list.

We got home and I laid down for a nap, which I hardly ever do, and surprise, surprise, I slept until 5:00PM

I called back Saturday afternoon to find out about the cough med and was rewarded by a return call from a rather snippy Dr. M. He said that he would send the prescriptions to the pharmacy. Since I needed to update my blood pressure meds, I waited for a while and then went on line to let the pharmacy know about my needed refills. A refill for the Adair was there, but the cough med wasn’t. I waited until Monday and called my PCP.

When I went I today to pick up my meds, I refused the Advair prescription. I also found out that the cough med wasn’t a prescription med. Was that why it wasn’t on the list of Discharge Prescriptions? I have had OTC meds put on a script before. Why was this different? Or was it just one of those things a patient with chemobrain was supposed to know?

I had tried calling my son using the hospital room phone because cell phones don’t work very well in that building. I could never get him or his machine; the phone would just continue to ring. I had tried dialing just one number and listening for a recorded message; nothing. On my last day there, I found out that I had to dial for an outside line to call my son. There had been no instructions when I got there; there was no indication on the phone at all. How the heck was I supposed to know I needed an outside access number to call out?

That’s enough bitching.

Basically, I had three issues. I was anemic. I expected that, that’s what the IP-6 does to deny the cancer cells the necessary iron to live.

I had at least one blood clot that the VLCC hadn’t looked for or caught that needed to be addressed.

And I had a cough, that can be a symptom of the PE or it cold be the result of an infection. Currently it looks like it’s not an infection, letting Mike and Amy off the hook! :-D

Now, I’m just trying to catch up with the rest of my life while sleeping in due to the meds. I have Radiation Therapy backed off until Thursday and I don’t know when my next chemo will start. BTW, I saw ANOTHER oncologist; Dr. P. is on vacation. I did ask him about the Maruyama vaccine. He said that he hadn’t heard about it but that he’d look it up!

Let me know if I missed anything that you wanted to know. And if someone can get me the name of that nurse….