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