Coming home has been such a flurry of activity that I kind of forgot to write for a few days. It is so good to be home!
Well, on Monday before we left Mayo, we had the opportunity to meet with a member of the sarcoma team and talk about the next step in my treatment. A wonderful Doctor named Steven Robinson came into the room. He is from Jamaica. He told me, I feel like I know you so well but why don't you go ahead and tell me about yourself. I thought it was funny that he thought he knew me so well but whatever, I proceeded to tell him about myself and what had happened thus far with my cancer. After I finished he told us that he had just come from the national sarcoma conference where he had presented my case to all the top minds on sarcoma in the country. "I have been studying you almost non stop for the last week, it's nice to finally meet you," he said. I thought, "It's no wonder we have had a hard time getting in with the sarcoma people, apparently they were all at this conference." I guess my case was unique enough that it made for some lively discussion. I am always grateful when I can be entertaining. There was a roundtable discussion about what would be appropriate for me from this point forward. Everyone present agreed that I wouldn't need radiation. Everyone also agreed that I should have chemo. That is where they stopped agreeing. Had they known that I had a high grade osteosarcoma they wouldn't have done surgery first instead they would have done 2 months of chemotherapy and then surgery. However, when the surgery was done they found that my tumor acted as though I had already received the chemotherapy. (non invasive, benign borders). The normal protocol at that point would be four more rounds of chemotherapy after surgery. Some at the conference thought that I should still have the two pre-surgical rounds in addition to the normal after surgery four rounds. Others thought the four after surgery rounds were enough. The other point that they disagreed about was the addition of a third chemotheraputic agent. I guess there is a drug called Methyltrexate that is used sometimes to treat osteosarcomas. Apparently it is only used in the United States and here only on children because they have better abilities to recover. It is given in the hospital and has to be very carefully monitored. As soon as your blood level reaches a certain point they have to immediately give a "rescue drug" and then keep you in the hospital for another 24 hours on high volumes IV's while they try to flush it out of your system. Sometimes it ruins the kidneys. He said that normally it wouldn't be considered for someone my age but because my health is much better than normal that they thought I might tolerate it. I knew there had to be a downside to all that running. I asked him how much it would improve my chances and he said, "We don't know, your cancer isn't well understood" I asked him what we should do if our local hospital didn't have the equipment to monitor it that closely and he said "Oh, I wouldn't do it then". Later he called me back and said he had talked to another doctor and they thought I really should try it even if it meant going up to Salt Lake for treatment. Needless to say, we left a bit confused. If I choose to add methyltrexate then I will have chemo every week for six months. (Regular chemo week one, methyltrexate week two and three, then back to regular chemo) I guess this is another of those things that we are just going to have to pray about. God knows what is best and he has been pretty good at giving us answers lately.
The doctors appointment went longer than expected. We jumped in the car and ran for the airport. We were the last ones to board the plane. On the way home we just happened to be sitting next to a patient and friend who had a serious accident a few years ago and had to have his jaw rebuilt. He has a bike chain in his jaw just like mine and is also permanently numb just like I will be. He was super nice and as we visited it just brought peace to my heart to look at him. He looked absolutely normal and said that it really is no big deal. Another little tender mercy.
When we got home our kids had made banners and were all sitting in front of the garage waiting for us. Apparently Elizabeth had been telling Shanelle, "This is worse than waiting for Christmas." I can't describe how nice it was to hug and kiss our children again.