Monday, March 8, 2010

starting week 4

I have now completed 15/40 treatments. I have been doing pretty well, this past weekend though, I guess I must have ate the wrong thing and have been nauseated since Sunday morning. I have been taking the zofran, which partially works.
The odd thing is that it all went away while I was in the chamber, but came back a few hours after I finished. ??? Anyways much better today.
This radiation enteritis seems to come in "waves". I seem to tolerate a regular diet for a few days and then it seems to become more than I can tolerate and I have the nausea and pain, which seems to last for a few days after I stop eating any fiber. The good thing about the no fiber diet is that pizza is included, the bad thing about a no fiber diet is that pizza is included.
I should say that apart from the past few days I have been doing very well. I have been working hard at getting back at my long distant running legs back and really feel ready. I am up to 7 miles and my legs are not extremely painful for several days after each run (which has been the case now for months).
I think it is a little too early to expect results from the hyperbaric treatments, as studies have suggested a minimum of 30 treatments and suggested 40. It seems for other conditions the number is less. To form a new blood supply to the portions of the bowel that have had the blood supply damaged, I guess takes time. I guess in many ways it is much like the patients with chronic wounds.
It is hard to have a problem that nobody really understands, I do not fault anyone for not understanding it, I really believe that my oncology doctors do not fully understand this disorder. My vision has gotten quite poor over the past few days, and I was telling a friend about it and she said.... "and you are doing this, why????
Cancer is easy to understand, everyone has been touched in some way by cancer at sometime and know what a relentless disease it can be. Most of the symptoms I am having everyone has had one time or another with the flu etc, so it must be hard to imagine why someone would go through 8 weeks of treatment for this. But like everything else I have read a multitude of journal articles, and this is clearly not something I want to have the rest of my life, and the progression of scares me to death, especially if there exists a treatment, so for now I feel that as long as Ken and I understand it, that is all the matters.
I got fed up with white hair, so I have tried a colour, it is just a temporary colour until I can get into my hairdresser, but being in Eugene on weekdays makes it hard.
I am quickly remembering why I have had long hair all my life, I usually never have to do anything more that just comb my hair, and of course with chemo, I had nothing to do.
Now it seems that something is needed, my hair is just a big mass of hair with no shape, so I have purchased a curling iron (years since I have used one)
I think that this is just going to be a phase that I have to grow my way out of. I was thinking the other day about the old bumper sticker. "if you are going to say no, do it now before I spend all my money on you"
I have been thinking the same thing, ..... if I am to get a recurrence and need chemo, I would rather it sooner, before my hair has all grown back...
I guess I am just at the stage of being interested in my appearance sometimes, for the first time in over a year.
I do feel fortunate to have hair and it clearly is much thicker than it was before and it was thick before.
I am extremely excited about my "nursery". I have about 300 little plants growing in my green house. Why so many? Because that is how many came in the pouches.
I read Barbara Kingsolver's book a few years ago "animal,vegetable, miracle" how she and her family managed to live a full year on what they had grown, or bought at the farmers market.
Upon reading this, I resolved that I would like to do this, or something like this. Last year plans just fell apart, and I grew very little.
So that makes this year even more exciting, and to have a garden over here in Eugene where it is much warmer in the summer than Bandon. So I plan to grow tons of tomatoes and peppers and basil ...and beets and I am even going to grow cantelope, (which I also have growing in the greenhouse now)
I guess in many ways this is part of what makes this radiation enteritis hard to accept, it would be EXTREMELY hard to live off the land if you were unable to eat any fiber, and living off the land is one of my dreams. The main source of protein would be beans, peas and lentils, 3 things I definately cannot eat right now. So many of the anti cancer foods that I have been developing into my diet over the past year, I cannot eat now. I do feel that much of what set me back this past weekend was asparagus, which was one of the main anticancer foods.
ANYWAYS, I will stop lamenting here.
It was brought to my attention that yesterday was the one year anniversary of this blog, so happy anniversary
Love Janet
jankenb @

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