Thursday, April 2, 2009

still peeling... but radiation is almost over

Today I learned that Monday is my last day of radiation treatment. Yippeee! I will have to go back a few times to be checked out. My skin is still peeling, still oozing... still gross looking. But again... everybody says its normal and expected so I'm not worrying about it. I can expect that the area that peels away will continue to grow larger and larger. The skin is burned, so it has to go.

I have read many articles about making the transition back to "normal" life. Many cancer patients find themselves feeling lost because they come to miss the reliability of seeing the medical team so often. Everything becomes more frightening because you're on your own again.

I'm starting to feel some of that edginess creeping around me. I had a little anxiety when I transitioned from going to the cancer center every week, to every three weeks. And now, I'm feeling some anxiety about not going to the radiation center every day. Its weird because while you're going through these treatments, you look forward to the end. And then when you end, its like stepping out into nothingness.

Right now I'm wondering if I'll be as good as I was before this. I know that I've been changed. My mind isn't quite as sharp; I forget things even more easily than I did before. My body definitely isn't as strong as before. My left arm movement is limited. I was making progress with my exercises until the skin started peeling. I stopped exercising because I was afraid of aggravating the skin issue and possibly hurting myself in a different way. Plus, it hurts like hell to move it around.

If I had to say it out loud... I'd have to admit that my heart is pumping a little kool-aid these days. (smile) Not sure if a lot of you are familiar with that phrase... we used to use it back in the day to describe someone who was weak or scary. That's me right now... both weak and scary.

A part of my heart has grown wings and wants to explore the world and live bigger and bolder than before. But another part of my heart seems to have shriveled. More afraid of being hurt, being left alone, having to go through all of this again. I was happy to have a boyfriend when all of this started; partly because it was so wonderful to have someone by my side through such a hard period. But also because it was a relief not to be out "there" looking/hoping to find a good man. My thoughts initially were... damn. If it was hard/damn near impossible to find a good guy before cancer, what in the world will it be like afterwards?

Honestly... I still think that often. And I don't have an answer. So, my heart has sort of shrunken away a bit, worrying that I'll be going through the rest of my life with this anxiety nagging me. I've got to examine how I will get over that feeling.

On Tuesday at chemotherapy, I had a new (I should say different) doctor come and talk to me. I think he was a resident fellow. His name was Dr. Lee. (shrug) He was rather dry but not totally unpleasant. Not as jovial as Dr. Kirkel -- the other resident doctor who worked with Dr. Siegel, my oncologist -- but he seemed quite knowledgeable. We talked briefly about the medication that I would be on for the next five years. Tamoxifen. He told me about the drug and its side effects. And yes... he scared me deeply.

Tamoxifen is taken to help control the return of the cancer. The problem with the medication is that it seems to have some harsh side effects. One side effect that affects 1% of the patients that take it, is uterine cancer.

Yep. You read that right. A drug that is supposed to save me from breast cancer could possibly give me uterine cancer.

(sigh)

The logic is that the benefits of the drug outweigh the minimal chance of contracting uterine cancer. It will likely keep my hot flashes going (which I'm grateful that they have been very minimal lately) and lots of other happy things along those line. Numbness, blood clots, memory loss, fertility issues... lol. All of that. There is a lot of interesting information about the drug on the internet.

A lot of women stop taking tamoxifen because they feel okay after awhile and think they don't need it, or they grow increasingly afraid of what the drug may be doing to their bodies. And a lot of the women who stop taking it, have a recurrence of cancer.

For one, I don't want to go through any of this again. But two... if my cancer comes back, it will be more aggressive, more difficult to treat and more likely to kill me the second time around. So, while I may not like these side effects I can guarantee you that I'll be taking this medication for as long as they tell me to do so.

I am trying not to think about the side effects too much. Like with every other step throughout this process... its usually a choice between two not-so-great choices. So, I will go along with the choice of tamoxifen and continue to pray that my side effects will be minimal and tolerable in my life.


I am considering starting a different blog -- or expanding this one -- to more fully explore/explain/discuss being a young african-american woman with breast cancer. I think I've gained a lot from expressing my feelings this way. So I'm going to experiment with expanding the reach of the blog. I keep wondering whether or not I want to step into that space in the world -- as the "cancer girl" and deal with all that will undoubtedly come along with it. Or if I really want to just finish my treatment and then put this behind me as though it never happened.

I still don't know which way to go. Sometimes I just think that I cannot live with this mantle over my life and then I think about all the women who will come after me. Knowing that they will go through these same emotions and fears and I feel like I'd be doing them a disservice if I didn't try to leave a lamp on for them to find their way -- even if its a dim bulb in the wilderness.

What do you think?


Oh... almost forgot to mention an interesting conversation that my mother and I had the other day. I was looking through my chart (once again) while waiting for treatment at radiation. And I read the plastic surgeon's report to Dr. Siegel. She mentioned a few things that bothered me... but the one statement that really pushed my buttons was that she wanted to encourage me to consider removing my right breast and having both breasts reconstructed at the same time.

Her reasoning was that once I've had the TRAM flap done for one breast, I will not be able to use that abdomen tissue for the other breast if I should need to go through this again. My mother agreed with her and felt that it was okay to do so they could be even and match.

Um. No.

It makes no logical sense to me to cut off a perfectly good breast for reasons of symmetry -- that won't exist anyway. It is true that my right breast could become cancerous in the future. And if it does, it will likely require a mastectomy as well. But...

I cannot make the decision to cut off my breast and I know there is nothing wrong with it today. Other than it being very large -- and that's not a crime -- that right fabulous boobie isn't bothering anyone. At least not enough for me to have it end up in the scrap pile for no good reason.

But... yet again... I am forced to consider something that bothers me, and to weigh the options against a different outcome that bothers me as well. I have been thinking about whether or not to utilize the plastic surgeon that I met with back in December. Although she came highly recommended by the general surgeon that I ended up not using, and also by my oncologist (who I really think the world of)... I just didn't feel much love and rapport with her. According to her report, I should plan on getting my reconstruction in 6 months. That is plenty of time for me to consider finding a different surgeon if I feel that is necessary. And then... further consider whether or not I should have my perfectly fine boobie cut off and then replaced.

sigh.

Oh well. Another day. More life changing decisions.

What do you think? About both things? Starting/expanding the blogs and possibly removing the other breast and reconstructing them both.

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