Friday, August 27, 2010

I am not the least bit concerned . . .

Dr. K called me yesterday, while my son and I were searching for his game. He told me he had talked to Dr. D from UW. And he said, and I quote, "Now I am confused as to what to do."

It seemed to him (my doctor) that Dr. D said to go ahead and do what he thinks he should do in terms of my care, but if at all possible, if we can manage the symptoms of the inflammation, could we wait to start anything, at least until my next scheduled trip to Seattle. So the message he got was go ahead and treat but they really wish you wouldn't. Dr. D said that they would like to give the treatment the time it needs to really work.

So I suspect that many might be concerned about my doctor admitting that he was confused. But I am not. I like that he is truthful and honest with me. There haven't been many Phase III clinical trials for patients in my situation. Even Dr. D said that the "inflammatory flare" that she thinks happened to me was only something she's read about in the literature. The trial I am in is a Phase I/II trial, which means that they don't know what will happen - that is the point of a trial like this. So it leaves my medical team wondering about the best course of action: wait and see if the t-cell infusions work, which might be 6-10 months (which would be December 2010 to April 2011 for me)? That might risk further progression of the tumors, maybe so much that it gets out of control.

Do radiation now, which would get rid of the third boob, but would also kill off those lovely t-cells we worked hard to produce? In theory, I think my body would continue to produce t-cells, but maybe not in the quantity that I had after the infusion (16 billion is a lot, I assume). Radiation would improve my sleep - my lower back is achey after sleepy on my back or belly for weeks now. I can't sleep on my right side (lots of scar tissue damage from surgery and radiation and lymphedema) and now I can't sleep on my left side because of the nodules, inflammation, and tissue necrosis which is located under my left armpit, towards the back.

I have appointments with the radiation oncologist and my regular oncologist next week, plus one with my acupuncturist.

I do have a lot of purple-gray skin where the nodules are, which Dr. D says is tissue necrosis, which is mainly dying skin. This is a good thing because it means the t-cells are there working to kill the cancer there in the skin.

Radiation would probably cause more inflammation and probably means more pain. I might have long term side effects like I do on the right side in terms of lymphedema, which means I might be doomed to be a back or belly sleeper for the rest of my life . . . And there would be some tissue damage, too.

Hmmmmm, what to do? At the beginning of this week, I was pretty sure I would do radiation. But now upon further consideration, I might wait. I will know more after I talk to the docs next week. My next appointment at UW is Sept 16. So, maybe let Dr. D see the area before starting new treatment, see if this gets better, and then go from there. I think now that the purplish gray is a good thing. My body is doing what it needs to do, so I should just let it. Give it time to do it's thing.

Patience is a virtue. As is honesty. I also like being the one to make a decision for my treatment . . . Dr. K, I think, is used to frightened people who just want the damn cancer to go away. He isn't so used to having a patient like me who questions every step and who takes an active role in my own treatment. And that's a good thing. I like him because he is willing to listen to my concerns and to let me make my own treatment decisions. It is very empowering.

I want to avoid taking any kind of taxol (Taxol, Taxotere, Abraxane) chemotherapy or any kind of chemo for that matter. It seems to be that that kind of chemo, while it bludgeons the cancer, it also bludgeons your body's immune system, making it harder for it to fight any cancer that is remaining. So it comes back, eventually, and then you have to keep resorting to the bludgeon and each time, you get weaker. That isn't for me.

That is why I say that I am trying to heal from the cancer, not fight it. As my friend, R said to me last year, have I tried loving the cancer? It is a part of me after all. Isn't hating it like hating myself? The cancer is my own body's cells going out of control and my immune system is so weakened from so many artificial toxins in our environment that my body can't get it under control. This is what Chinese Medicine says is going on and I tend to believe it these days. The trick is to help support my own immune system. So I will listen to what my acupuncturist says, too, next week. She just came back from a weekend workshop with her mentor, who specializes in cancer, and she's anxious to share what she learned from him with me.

I will end with this thought: the last CT scan I had mentioned a very small suspicious spot on my liver, so I asked Dr. K what he thought about that. His answer: you are too healthy for it to be cancer.

I credit Chinese Medicine for that.

I think this all means that I will wait, at least until mid-Sept, to figure out what to do. Give my body plenty of opportunity to rest and relax. And make monthly trips to the Coast, I think.


Joanna said...

Hi Dee,

You have quite a quandary. I love your quiet confidence. Would surgery be an option? I am not sure that I agree with you regarding chemo. I had taxotere and my immune system stayed fairly strong throughout it all. But you know your body best. It is hard when treatment has to be "by guess and by golly" since the cancer does not come with an instruction manual.

Dee said...

Hi Joanna,
Thanks for letting me know about the Taxol. I think my reluctance to do chemo stems in part from how I feel about the major pharmaceutical companies and the way they focus more on the bottom line instead of the patient. I also had a pretty bad nausea from adriamycin and cytoxan. Hated it! We will see what the docs say.