Progress and Panic

Progress. I was going to post yesterday morning to say that radiation had finally smoothed out with fewer problems overall. I've been going everyday at 10 AM and aside from occasional minor delays (anywhere from 15-30 minutes), it's been going all right. Alas, just before I sat down at the computer, the phone rang. It was one of the techs telling me the machine was broken again. I was told to call back if I didn't hear from anyone by the time my appointment rolled around - and I didn't. Two calls later, the good news was that the machine was back up again, which they apparently refer to as "running beam". I was able to go in at noon and still make my 1 PM appointment at UMC North for a port flush, so all worked out in the end. And I was thankful they were able to call me so I could wait at home and not there.

This means that I have so far received 23 of 35 treatments. As of Thursday I will have completed my "general" radiation of much of my left chest area and armpit. On Friday they will switch to a "boost" that will target only the surgery site - for 9 more treatments. That should have me finishing up during the first full week of September. Almost there!

As Mike mentioned in his post, I am seeing side effects of the radiation but they are not nearly as troublesome as those from chemotherapy: mostly sunburn-type skin with one rashy area (apparently that's because you burn from the inside out...greeeaaaat), and one area that is really burned, almost purple and blistered. I think I can hang in there for three more days because after that, that area won't be targeted anymore. If I make a fuss, they will stop and I just want to keep going.

Panic. So, that's the progress part and now here's the panic. When you go daily for radiation, you start seeing the same people in the waiting area. I've taken to chatting with a very nice Vietnamese woman, who is receiving the same kind of radiation as I am. I had also seen this woman, J, in chemotherapy and in asking about her treatment, it came about that she didn't really know much about the drugs she'd received. I hadn't heard of one of them and knew only a little about the other, so I offered to look them up for her. In doing that, I found a website that lists all the chemo drugs and their potential short and long-term side effects.

As stupid as it may seem, I'd never done that for the drugs I received because I'd read about them in some cancer books I have. SO...I looked up cytoxan, which is the one I am most worried about as my doctor told me one of its rare side effects is to cause leukemia. I found this out because one and only one of the books I read said that you shouldn't receive more than x-many milligrams of this drug and I asked her about this before I began chemotherapy. She'd never heard of any need to limit this drug, so despite my fears, I consented to take it.

Looking back, I really should have asked more questions and also asked whether there were other alternatives. The websites (note the plural: websites) I looked at the other day all indicated that cytoxan...although it is used to treat cancer, can also cause cancer - particularly of the bladder, lymph nodes, and bone marrow - anywhere from months to years later. This, as you can imagine, sent me into a complete tailspin, which much loving attention from Mike has not yet mitigated. I wanted to shout "Out! Out damn spot!" But nothing will allow me to go back and take that drug out of my body. What's done is done but I can feel it still coursing through my veins, almost like a hum. I am so scared, I can't even speak the words. It makes me feel nauseous. I want this to be the last round for me so bad, but I can feel my body weeping with helplessness. And the idea that something I did to make me well might actually cause something even worse is the worst feeling of all. I want to grow old with my husband, my child, my family, and friends. I want to go back to worrying about what now seem to be trivial things and not whether I'll make it another forty years.

As if the threat of getting breast cancer a third time isn't enough (and of course, I read in the paper this morning about a woman whose breast cancer returned for the third time and had spread to her liver and bones), there are long term side-effects of the drugs they treat you with. I chose to take this drug and if something happens down the line, that puts the blame on my shoulders for not asking if there were other alternatives. Perhaps I would have made the same decision even so, but somehow I feel there has GOT to be a better way. When all this happens to you, you are in such a vulnerable state that even people like me, who do make a point of looking things up, can allow control to pass to someone else.

You will note that I titled this bit "panic", so I do realize that's what I'm doing. But sometimes you've got to let it claw its way out before you can move forward again. There's no taking this drug back out of my body so things will play out however they will. How much luck can I hope to have? How much can I ask for?

Still, I met a man in the elevator to radiation that I'd seen in chemotherapy. I don't know what kind of cancer he has but he has to have 28 chemotherapy treatments (one every two weeks) and radiation at the same time as well. How scared he must be. I'm sure he wants to be lucky, too. How's that for perspective?