Well, I just met with my sarcoma specialist from the Mayo Clinic in Rochester early this morning. I am so blessed to have him as the man calling the shots. He has been with me for 6 years now and not only has he been a really good doctor, but he is a really genuinely good person and treats me well. I can’t say that about all of the doctors I have seen. We went over my scans in detail, comparing scans from 18 months ago to 6 months ago to this last scan in late February. The tumor is growing – not crazy, but it is growing. He is happy that everything else has remained stable. He stated that I have “one bad actor” in the bunch. As my brother, Craig, said, “At least it is only one bad actor and not the whole theater.” Yes, I am thankful for that. My doctor is the head of sarcoma specialties at the Mayo Clinic and he is running the monthly tumor board late tomorrow afternoon. He will present my case there. I have been presented before, but this time all the folks will get together and talk about possible next steps for me.
The first step would be to see if we can remove this bad actor via surgery. That would be the preferred method. However, this is not without complications, as this tumor appears to be attached to the larger tumor on my left pelvic wall. I asked him what would happen if we “poked the bear” the bear being the big tumor that has been inoperable. My sarcoma specialist put in a consult request for the oncology surgeon to look at my case and contact me. He will communicate with me via telemedicine zoom until I have to be there for surgery. Yes, the surgery would be at the Mayo Clinic. This would be an open surgery, so major surgery…so that means we would either drive or fly there and take a train back. It is a 19 hour and change drive from here. You can’t fly within the first 2 weeks after a major surgery like that. If they are able to do the surgery, they are hoping that I would just continue on the treatment I am on now and things would be fine.
Another option mentioned, which is my least favorite option, would be radiation. I am concerned because of the location of this tumor. It is sitting on the dome of my bladder. The radiation would most likely also hit my bladder, causing permanent damage. I don’t like that idea. I am hoping that would not be the case. I am not sure I trust the radiation folks here to do that. Radiation in Rochester would mean relocating there for a month or more. This is what I hope would be my last option. I hope I didn’t just jinx myself saying that.
Rich asked about chemo. My sarcoma specialist has a list of the different chemo medications we would be going to next if surgery or radiation is not an option. The first choice would be Trabectedin (Yondelis). It would mean I would need to get a port placed again and it means hair loss, severe nausea, etc…all the fun things that comes along with chemo drugs. It is given over 24 hours every three weeks. That is my next projected chemo drug. However daunting that sounds, I am still holding out that a surgeon can work on this and maybe avoid this altogether for now.
So, in summary, I am waiting for the results of the tumor board, which I will get Friday, I hope. Then I will hopefully be meeting with a surgeon via zoom from the Mayo clinic. I will continue on until then doing what I do…I have emergency medical training tonight for 4 hours….and fire dept dinner and meeting tomorrow night. I leave for Houston in about a week and I hope to have a plan in place at that point. We shall see. I have a blood draws twice next week before I leave and an IV treatment about 24 hours before boarding the plane to Houston. For now, I have a house to vacuum and laundry to get done. I still have a few posts here to make as well. For those of you praying for me, thank you. I made my doctor aware that I was going on a trip to Africa in June….so we shall see how everything progresses.
Messina Musings 