December 3 2008 OHSU revisited

Aunt Susan and Jim went with me to OHSU to find out my MRI results and the next steps for treatment. We met with the orthopedic surgeon first and he said the my ankle and foot MRI shows no more tumors, but from the tumor they removed they could see on the outside margins that there were cancer cells, so the know that there is still cancer in my ankle. They are not able to just remove those cells because they are microscopic and they like to have a 1 inch clean margin around the tumor site - I know that I do not have an inch to give on my ankle because they would run into bone and other stuff that I need to walk. He said that I should take action soon by either amputation or radiation. He wanted me to decide in the next couple of days. He also said that there were no statistics to say either option would cure me. He said if it was his ankle he would start with radiation and then have amputation as the back up plan if tumors came back. The radiation specialist said the same things and also said with radiation it could cause shrinkage of the fluid around the ankle so that it is stiff and painful to walk, but that may not appear until 5,10, 15 years. The main side effect of radiation is tiredness - I am already tired all the time with 3 active boys - so this should be not big deal -ha, ha! I would need to receive 33 treatments 5 days a week starting soon, but I could go to the Salem Hospital for the treatments. I did sleep on my decision and have realized that I like my foot and ankle and will try to keep them around as long as I can. I have now made future appointments for a PET scan - will check my whole body for cancer and also the appointment to review the PET. I will post those when they happen.

November 26 2008 OHSU

Aunt Susan, Jim and Jeanette went with me on this adventure. Bud came home early from work and we were on the road by 1pm. We got there in time for the appointment and then waited for 45 minutes to see the doctor - but we had a beautiful view of downtown Portland! I first met with the orthapedic surgeon and he talked about synovial sarcoma being a soft tissue cancer and that synovial sarcomas are rare only 15,000 cases a year in the US. He reviewed my CAT scan and said that my lungs were clear - whew! He also said that I would need a CAT scan every 4 months for a least 3 years. He said he needed to see an MRI of my foot and ankle before we could really talk about treatments, but options could be amputation, radiation, surgery, or chemo or any combination. Next we met the Chemothearapy Doctor who said that my tumor was small and since my lungs were clear that I did not need chemo. I said "Nice to meet you - goodbye!" They decided that I would wait to meet the radiation specalist after my MRI. They were able to schedule my MRI for 9pm that night - my support group said they were willing to wait it out - it was 4pm - so we had 5 hours to have fun. We actually had a wonderful night on the town - we rode tram down the hill (the view was beautiful at sunset) and then we took the streetcar to Powell's book store, but decided we needed to eat first so we went to Noodles & Co for a nice meal, we then browsed and bought books. Susan knew of a cupcake place down the block so we decided we had time to get some sugar! Unfortunately it was closed, but Ben and Jerry's was open. Susan and I both did not have coats and it was cold, but we still both got ice cream that we ate as we walked to the streetcar stops while the cold wind blew. Each streetcar stop showed the time until arrival so we walked about 7 stops before I said "Stop!" We only had to wait 5 minutes and then we got back to OHSU early for my MRI. I checked in at 8:30pm with the expectation that it would take 1 hour. They did not finish with me until 11:15pm. I was very disoriented and ready to go home. For those of you that have not had MRI let me tell you that they do not hurt, but they make very loud strange noises and the music in the room I was in kept cutting in and out so I had to come up with distractions for myself and at the same time not move or even wiggle my toes. I wish I could say that I slept and had peaceful dreams. And by the way this was the day before Thanksgiving. Bud and William were flying to Chicago very early the next day and I was headed to Coos Bay with Jake, Luke, Jeanette and Jim.