This weekend is about staying on top of the pain. With the help of Percocet, this isn't too hard. Like a clock, the pain in my bone marrow kicked in 24 hours after my neulasta injection. Along with the pain seems to come a kind of weakness in my hips and legs that makes walking feel very uncertain. I think this is a preview of what being old feels like!
Being on Percocet isn't half bad. I feel dopey and silly, which is fun. The pain still comes throgh and a heating pad seems to help. I actually managed to clean the kitchen, vacuum the downstairs, catch up on filing and wash the kitchen floor yesterday. Hardly the stuff of champions, but it's something at least.
Joseph and Margaret are both back at school and Steve, Butters and I are living the empty nest life again. I do enjoy the serenity and order. It is nice to be able to concentrate on getting well and helping Steve wage his ongoing battle against colds. Steve's lousy immune system has been a trial as long as I've known him. To be an apparently healthy person who works hard to stay fit, eats well, takes vitamins, while constantly having to remain vigilant about getting colds that turn into sinus pain all the time really stinks. The best news is that vitamin D, in the form of uv light therapy, seems to be doing with other treatments have not. We are optimistic. As it is, I have told him he's not invited to the hospital when I get my surgery, since I need him well to help me recover. It will be sad not to have him there, but I will be well supported with family. He will take excellent care of me when I get home.
At my next chemo visit on feb 1, I imagine the next phase really begins. There is talk of restaging the cancer, which sounds like more tests and scans. I am fascinated by this idea of restaging. Even in the best case scenario, where they find no more evidence of cancer outside the initial area, what does that really mean? Will it change their treatment plan? If not, why not skip the testing?
There is this lovely word "recurrence", of which I have a high likelihood with this cancer, and that goes to the heart of things. Two possibilities: First, that cancer cells are already active somewhere no scans can find them yet. If that is the case, then being declared "cancer-free" is essentially meaningless. The second possibility is that, while no cancer cells are extant, the underlying conditions in my body that allowed the cancer to begin still remain. This is reflected in the description of cancer as "a systemic disease, not a tumor disease."
What they recommend for treatment will tell me a lot about how they conceptualize it. At this point, the plan (I think) is to remove the entire breast then irradiate the surrounding tissue and lymph nodes that were cancerous. I am not sure whether they will remove the nodes, there seems no talk of that. I have to find out why. Not that I'm in a hurry to have them gone. My first surgeon removed nodes under the arm because she said it was not possible to biopsy them otherwise. A subsequent cat-scan biopsy at Sloan proved this to be wrong, about which I have every cause to be angry, unless they all end up being removed.
Meanwhile, we wait in the dark. I don't find the MSK folks to be working a real team. They seem to pass people in a sequential fashion from, say, oncologist to surgeon to radiologist. One gets the sense or territory being respected...not in the interest of the patient. It is going to take effort on our part to keep it all fully integrated. It is frightening to think of the many who need to do this without the education, resources and, frankly, the confidence to tackle the system. We can and should do better.
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