I met with a radiation oncologist in Rochester on Wednesday and she recommended I get radiation five days a week for six and a half weeks.
Every doctor so far has said the same thing to me, “You’re too young for this.” This doctor was no different. Her reasoning for radiation was solid: I’m young, my cancer was multi focal (which means I had multiple tiny tumors throughout the breast tissue), I’m estrogen negative, there was lymphovascular invasion, and the cancer is high grade.
My struggle and hesitation to get radiation is mainly about one thing: the risk of lymphedema in my arm. I feel like I’ve dealt with cancer, mastectomy, and chemo pretty goddamn well. I have adapted as new things have come up. But limit the use of my arm, and it may push me over the edge. It could very well tip the scales a little too much towards darkness and depression. Could I adapt to limited use of an arm? Of course, this is what we all do, adapt to our environments. This is how we survive and evolve on the most primitive level as a species.
But this could be a difficult adjustment for me. I have already been experiencing mild swelling in my wrist and hand these last few weeks. Radiation will further compromise my already compromised lymph nodes. It will scar and damage the remaining healthy lymph nodes it comes in contact with which could limit the flow of lymphatic fluid and increases the risk of more swelling.
There are things that I am doing to manage the swelling: wearing a compression sleeve and gauntlet, holding my arm above my heart several times a day, lymphatic self-massage, and physical therapy which I will start after chemo is over.
It comes down to the word “limit.” I don’t like that word. I don’t like the implications. I don’t like the sense of not having any control. Not that I truly have control over anything. Maybe this is what my struggle is about – letting go of control and accepting my limits.
Oh, I’m so sorry that you have to make this decision. Go against medical advice and take a huge risk, or follow medical advice and take a huge risk. I’ve been in this position and it sucks. I thought it was cruel that no matter what I chose, I couldn’t ever see what the result of the other decision would have been. I can’t say that I like living with lymphedema, and that I don’t constantly fear a secondary malignancy due to the radiation. But I know that you’re a creative, determined person, and that even if the lymphedema takes a good hold, you’ll figure out how to live within comfortable limits, and still truly live. Love to you, and please let me know if you need anything.
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