Well, I have just left Dr. P’s office at MDACC. He was very personable and had an amazing way with “word pictures” to help me understand what is happening. My kind of sarcoma – myxiod – is so rare that I will not even find anything about it here in the libraries. He basically told us that he was not being arrogant, but that we would just have to trust his medical expertise on this. And that is exactly the reason that we came 900+ miles – to find the best doctor in the world for my kind of cancer.
The word picture he used was of a yard full of weeds. We have already plucked the weeds by doing the debulking surgery. It will really not do any good to do another surgery, and the weeds are going to come back. He said that radiation is like stomping on the weeds; they will just be back the next day. So our next alternative is to “spray” the yard – chemotherapy. Because of the rarity of my cancer, there is no set treatment for it. There are a couple of options and he is going to start with the one that will be less harmful to my body. There are a lot of options for a sarcoma, but generally they start in either the bones, the connective tissue, or the fatty tissue. Mine is a mix. We have decided to treat mine as if it started in my uterus, which means we will do chemo as if it were a gynecological issue. If we determine that that type of chemo is not working, then we will try another option that will be more difficult on my body.
Now, here is the important part: it is probable that this cancer will never go away. My doctor was very clear that my body will not be able to take chemo for my entire life, so there will be “periods of rest”. There will be times if the cancer is stable that they will take me off the chemo and let my body recoup. But my life will be lived in three week cycles from here on out. In this way, it is not that different from when they thought I had mesothelioma. The difference is that this chemo will not be as hard on my body.
I’ll obviously know more about it after I meet with Dr. F., but from what he was explaining today, it sounds like I will have chemo (one of the medicines) for a few hours on Day One, then come back on Day Eight for that same drug, plus the second one. There will also be an injection on the ninth day. The second week will be the hardest for me. The third week I will be “off” and start all over again on Day 22 (Day One of the new cycle). Every six weeks I need to be scanned, and they really want me to come back to Houston to do it.
So the plan for now is: three week cycle, three week cycle, fly to Houston for a scan and a quick doctor visit, then back home to start the next cycle. Three week cycle, three week cycle, fly to Houston for a CT scan and doctor visit. Rinse and repeat. Dr. P. did say that I should go ahead and do the tonsillectomy before I started treatment and to do it ASAP. If it takes me more than 3 weeks to start treatment, they will have to do another scan. (Can I just take a minute to talk about exactly how gross that Barium stuff is? YUCK!)
There you have it, friends. I will post more as I get scheduled with Dr. F. and she fills me and as I start treatment, but I wanted do a quick update and thank everyone for the prayers. I feel no anxiety or sadness today; I almost feel ready to take on the world!