I hate being in a holding pattern. I can’t get in to see Dr. B. (ENT) for my consultation until Tuesday. He just did my son’s surgery and he knows I am cancer patient, so I hope that he will fit me in ASAP. But knowing it took a week to just get the consultation, I’m worried. I have no idea how long it will take me to recover, and if I don’t start chemo by July 23 I will have to have yet another CT scan. Since I will be having scans (and drinking that barium gross-ness) every six weeks for the rest of my life, I would like to avoid an extra one if at all possible! I can’t start the chemo till I’m recovered from the tonsillectomy…. so as you can see – holding pattern. I feel like I have been in nothing but a holding pattern since this cancer was found.
I’m not sure how much of a true update I have done since seeing the doctor, so forgive me if I repeat myself. I had a CT scan on May 11 before I was supposed to start my other chemo regimen. When it was discovered I actually had sarcoma, we went on hold. Dr. F. was able to tell me that it looked “good”. When I made it to MDACC, Dr. P. said it was “clear”. (That was exciting!) However, I had another scan on July 2. And the cancer is definitely back. In several places. On the plus side, it is slow-growing – about one-tenth of one centimeter since May. If that were it, it would be a positive thing. However, the cancer is diffused. There are nodules around my liver and in the spots where the organs were taken out. There is even one in my neck. This is why the doctor thinks I will be on chemo for the rest of my life.
I find I grieve at random times. We may never be able to adopt. I may never have hair again. I may be sick the week of my son’s birthday or Christmas. All these are “maybes” now, but sometimes they hit me. It’s really hard to imagine being on chemo for my whole life. The nurse at my local cancer clinic said that they are trying to make cancer more of a chronic disease like high blood pressure, rather than a end-all-be-all. I thought it was a great analogy, but chemo is a lot harder than high blood pressure medicine.
Also, if it does turn out that I can’t drive while on chemo, that is really going to change our family dynamic. I will never be able to meet grandparents halfway when they want Little Man to come stay. I won’t be able to take him or pick him from school. My husband may not ever be able to go to conferences for work again, unless I can go stay with family. A lot more things will fall on my husband. We are lucky that we finally have a taxi service here in town, and I’m still looking into bus routes now. On the plus side, it means we can drop my car from the insurance and sell it. That should save us some money. I don’t know. It’s a lot to think about.
One benefit to the new diagnosis is that this treatment regimen won’t be quite as hard on my body. I won’t have to be monitored for liver damage and Dr. F. said that the nausea is usually not too bad with these two drugs. However, both of them have an extreme affect on my white blood cell count. I will be very susceptible to infections. I’m already “high risk” with a young child, so I’m resigning myself to lots of doctor and emergency room visits. I just hope my poor husband will be able to get some sick leave from the sick bank if he has to take me every time.
I have had a number of people volunteer to take me back and forth to chemo so that will be a huge blessing. I’m working on a list now. My son’s baby-sitter is moving away at the end of the month so we are all sad. (I mean, happy for her, of course, but she will be missed!) I hate finding new baby-sitters. It is incredibly difficult to leave your child with someone you don’t know well. We’re taking him with us to go see Brave today. I hope he does well. Well, he just woke up from nap and is kicking up quite a fuss, so I better go check on him.