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