Saturday, November 8, 2008

A Little More Info, plus a Bit of a Rant......

A good day for the most part yesterday, afebrile. I researched chemo and fever and came up with something I had not heard of before - chemo itself can illicit flu-like symptoms without a white cell drop (neutropenia) and of those chemo patients experiencing fever, a definite source of infection is found in only about half.

This is interesting for several reasons: (1) Even before I researched this, I told my cousin yesterday that I felt the fever was somehow directly related to the chemo, because ordinarily if I have ever in my life had even the slightest fever, I remember always feeling miserable - with this fever I didn't feel sick at all and that made no sense to me. My skin hurt a little, but 102 fever and no feeling of sickness? Weird. (2) Again, no information from any of my docs that this could happen....and in fact, not even one word about the possibility of neutropenia and its consequences. I only knew because of the experience I had years ago with my mother.

Before anyone gets huffy about my comparison of California vs. Michigan medicine, let me make one point perfectly clear, unfortunately, they all have one thing in common, they keep the patient in the dark most of the time. I have had to do all my own research on chemotherapy, diet and exercise, and now the possible side effects of chemo.

Not one doc has yet told me anything about my left arm being at risk for lymphedema. If I weren't a lymphatic therapist, I would have no idea. The most said, and only by my surgeon in MI and also my surgeon here, is that they didn't want me to do "too many" exercise repetitions with my left arm - that's it, nothing more...shocking! I have not probed deeper on this topic, because for my own "research" purposes, I want to know what information is given the typical patient. (None of them know my background - that I have worked for years with cancer patients, that I am a CancerGuide, a lymphatic therapist and have developed my own movement and laughter program for cancer survivors.)

I also found it sad and pathetic that I had to bat lab techs and nurses away from my left arm the other night at Stanford - they were determined to draw blood, start IV's or take BP's from it. I feel like having "DO NOT EVEN THINK OF TOUCHING THIS ARM" tattooed on it (of course, I will leave the tattooing only for my eyebrow which also are falling out fast!)

I can only say working with cancers survivors and being one are two completely different things. Perhaps this is what I needed in order to be truly effective and therapeutic in my approach.

1 comment:

sara meli said...

Maybe you SHOULD tell you physicians what your background is, and ask them when they tell you something if they could be more specific (ie when they say 'don't do too many exercise repetitions with your left arm' ask them "why exactly?" And maybe it would also be worth asking them, gently, why they don't provide patients with comprehensive information about side-effects and how to care for themselves? I think that silence on this issue is not helping the physicians in their practice, nor their future patients. How are you feeling today, mumsie? I love you and miss you!!!