……That is the question that was finally answered by my doctors last week. And the answer is, unfortunately, YES: we are going ahead with radiation. Two Fridays ago I spoke with Dr. Majlis about the next (and hopefully final) step in the plan for my treatment. When I entered the room he casually laid back in his desk chair, hands on his head, and announced with a smile, “I am sending you to radiation!” Now, I had expected this conversation to go a little bit differently and to be more of a two person discussion rather than a unilateral statement, but since that´s not really how the doctors do it here in Chile, the news was delivered in the latter fashion.
Originally Dr. Buhler had told me that the oncology team needed to meet to discuss and decide what to do about radiation, since my case is so unusual. However, it was clear from my conversation with Dr. M that no meeting had taken place, and even worse, his delivery of the news made it seem like he made up his mind independently and without much thought. (I´m sure he isn´t just make it up as he goes along, but his cavalier attitude does sometimes make me wonder). I, for one, find it difficult to believe that the decision to subject a person to radiation for a prolonged period of time should be taken so lightly. So I scheduled a meeting with a radiologist and went home to sulk. I´m not sure why the news surprised me so much, since, upon review of the series of emails between Clinica Alemana and MD Anderson, I noticed that the doctor at MDA had suggested radiation all along.
I guess the thing that was most upsetting (besides the fact that I don´t really want to receive radiation) was that now I won´t be able to go home for the winter holiday. As part of our contract Jon and I each receive one ticket home after the first two years of working at the school. Unfortunately I will have to postpone my trip until further notice. Jon, however, really needs to go home and see his family and meet his nephew that was born in December, so he will be going home for a bit while I stay here in Santiago. Luckily my mother is going to come down again to be with me, which is great because otherwise I would be here all by myself with no friends and nothing to do but sit in my freezing cold, house. As you can imagine, this would probably be a depressing prognosis, even under the best of circumstances.
After mulling over the idea of radiation all weekend long, my meeting with the radiologist went surprisingly well. For starters, I was pleased to encounter my first female doctor at Clinica Alemana. For some reason, I find it much more comforting to have a female telling me about the risks involved with breast cancer treatment than a male. Plus, she was extremely nice and was the first person to ask me if the treatment was something I wanted to do, as though it were my choice. And you know what, I have to keep reminding myself, that from here on out what I decide to do for treatment IS my choice… since I am in remission, radiation in my circumstance is purely preventative. I would hate to think that I have no control over what happens to my body, and that I have no right to say no if I think the risks will outweigh the benefits. For example, especially since they will be radiating my left breast there are risks to the heart, lungs, and ribs. My heart has already been subjected to very strong drugs, which have the potential to greatly weaken the heart muscle. Also, the radiation can weaken the rib cage and combined with the pressure of the expander, has the potential to crack ribs. In addition, I could develop a lung infection or possibly even receive a new type of cancer because of the exposure to the radiation. Dr. Goset, the radiologist, did say that these side effects had a minimal (less than 5%) chance of occurring. She explained that besides the skin burn that I will inevitably receive from the treatment, the most common side effects are possible interference with the thyroid gland or a condition called lymphedema. Since I had all of my lymph nodes removed under the left arm I am especially prone to the second condition, which is the swelling of the arm and hand caused by the collection of fluid in the area. Some of these side effects may go away in time, or some may be permanent. In addition I won´t be able to lift anything heavy for the next few months and need to be very careful about bruises, cuts, or infections on the left arm.
So now that I´ve told you about the risks, let´s get to the possible benefits of radiation. Radiation is done because sometimes the surgeon is not able to remove all of the cancerous cells during the surgery. The cells may be so microscopic that they cannot be seen or detected. Since I had a skin sparing surgery it is more likely that there could have been cells that were not removed. The radiation will kill these cells, stop the disease from spreading, and decrease the risk of the cancer returning. Normally, however, stage four cancer patients do not receive radiation because the cancer has already spread, and therefore, radiation would not be effective in preventing it from invading the lymph nodes, since they have already been compromised.
However, Dr. Goset managed to convince me that in my case I should feel lucky that they want to be so aggressive with my treatment in the hopes that they can prevent a recurrence. I´m not sure the words “lucky” and “radiation” should ever belong in the same sentence, but unfortunately that is the warped world in which I live. As I previously mentioned, it is very rare for a stage four patient to ever go into a period of remission, so we are treading in rather unknown territory. Usually treatment for metastatic cancer focuses on how to contain the disease and keep it from spreading further. Because of my unprecedented response, the doctors have decided that from hereon out, they are going to treat me with protocol for a stage one or two patient, instead of stage four.
So, after agreeing to the radiation, Dr. Goset told me that I needed to go BACK to the plastic surgeon and have him remove the liquid he had just put in the day before, because the expander was too full to get an accurate measurement for the radiation machine. I really hope they didn´t charge my insurance company for such a pointless procedure, but I´m sure they did. The following day I went back to the radiologist for my planning session. Since I had no idea what a planning session entailed I was pretty surprised when I returned home that afternoon with four bleeding tattoo marks on my chest. Basically, the point of the meeting was to figure out where they are going to project the radiation beams. First I had to take off my shirt and lie down bare-chested on the machine, hands above my head. This was a little painful since it really stretched out the scar under my arm where the lymph nodes were removed. Then they drew four sets of Xs, in the shape of a cross on my body so that they will know exactly how to position me under the machine each day. Then, out came the tattoo needle and they proceeded to dye my skin with blue ink so that the marks won´t wash off in the shower. After just those four little marks, I am unsure whether I truly want to get a real tattoo when all this is done. Ouchie!! Luckily the marks are pretty small and apparently will wear off in a year or so. Oh, goodie! Next I was taken to the scanner machine where they took a scan, presumably to see where the tumor was in relation to my vital organs. It took two nurses approximately 30 minutes to make sure I was lined up EXACTLY with the tattoo marks. They must have repositioned me at least 50 times- “A little more to the right, a little more, a little more… nope.. too much. Now up, up, down, up, turn your head to the left….” Although somewhat annoying and uncomfortable since again I was bare chested with my hands stretched above my head, I was glad that they cared so much about getting an exact scan. If they had said, “oh well… that´s close enough” I would have been a little more worried. After the scan was over, the doctor told me they would call me next week to let me know when we were going to begin, and away I went. I have to go in every day for 25 days at exactly the same time every day, and I am not looking forward to it. But I know many brave women have done this before me, and, as long as I can get my brain to go to a happy place while I am lying there, I don´t think it will be too traumatic. We shall see.
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Thinking of you today and knowing that you are a tough One who will get through those 25 days, taking one of them at a time. So glad Sara coming down. Prayers for you, sweet girl.
Use every weapon available to continue your fight against cancer!
Forgotten benefit: super powers. 🙂