After my mother's health started to fail, we decided to move to Ohio and closer to my parents. I started collecting "Star Wars" toys -- something I had always wanted to have as a kid, but never received since I was a girl. The toys could be bought for a couple of dollars a piece -- unlike the model horses I had collected earlier -- although there were a lot of high-end collectibles I would have liked to own but just couldn't afford. "Star Wars" became my outlet from the hassles of everyday life. I created a Jedi costume and took our son to a few small events nearby as a break. We all seemed to enjoy these trips and although he didn't quite understand my obsession, even Mark liked seeing some of the celebrities he had grown up watching in movies and on television. He even bought me a nice lightsaber replica for Christmas once we found one at a store that took layaways. A few times we had to cut things short due to how Mark felt, but the worst time was during the event called "Celebration 3."
I had been looking forward to Celebration 3 for about three years. I had not been able to make Celebration 2 since we were still living in Michigan at the time. Once it was announced that the event would be in Indianapolis I started scrimping and saving as much as I could. Indianapolis -- only a three hour drive -- was do-able.
As part of the Jedi costuming group I had joined, I signed up to help volunteer during the convention. I was getting more and more excited as the time drew near. Then, the day before I was scheduled to leave, Mark started getting violently ill.
I watched, wondering what was going on with him as he threw up time after time. The next morning, he seemed fine, so we ran a few errands before a was scheduled to leave. I was wary about leaving him, but everything seemed well. He told me to go, so I went. I was meeting my best friend there to share a hotel room. i no sooner got into Indianapolis when Mark called. The nausea had returned. Unsure of what to do, and trying to do what I could from a distance, I called his doctor in Michigan. The next morning he was no better. Our son stayed home from school because Mark was just too ill to take him. That 9-year-old boy took care of his Dad until I could get home -- made sure he took his medicine, . There were a couple of things I wanted to do at C3 before I could leave -- but I sure felt guilty about staying as long as I did. I got my photo taken with my Jedi group, sat in on an interview, manned the fan booth table - and left basically as soon as I got there. Right before I left it had been announced that George Lucas was making a special appearance on Saturday -- I would have to miss it and all the other exhibits and displays. It was a waste of all the money I had spent on tickets and travel, but I had to leave. My husband was sick.
By Saturday morning, Mark was worse. Early that morning I called 9-1-1 and had him transported to the local hospital (Actually the town we live in doesn't even have a hospital -- we had to go 12 miles.) Once there, the doctors didn't know what to do. After consulting with his doctor at University of Michigan, it was decided to transfer him up there. The doctors had planned on using the Life Flight helicopter since Mark's condition was so severe, but a freak late April snowstorm grounded all flights. We had to wait for an ambulance to drive the 200+ miles in the snow. Later Mark said that was one of the most harrowing experiences of his life. The next day, once the snow had stopped, I dropped off our son at my Dad's house and drive up to see my husband.
After three days in the hospital -- and three days for me in a hotel room -- the doctors thought they had finally found an answer for Mark's illness. His rheumatologist had started Mark on a new medication called Imuran about a month earlier, shortly after Mark underwent a four-week round of chemotherapy infusions. It was determined that Mar could not tolerate the Imuran, at least not in conjunction with the chemo also. Although Mark was still severely dehydrated and weak and ill, they released him from the hospital the next day. Mark was in no condition to travel, yet we had to travel four hours back home. I was horribly upset that the doctors had not taken into consideration the travelling we had to do when they released him. In my opinion, it was another week before Mark was well enough to actually "join the living" again. Even our family physician was upset when he saw Mark's and that the doctors at U of M had allowed him to travel in that condition. When I received a survey regarding Mark's stay at the hospital, I sent it back with scathing (but not rude) comments in the matter. A few weeks later I did receive a phone call from one of the department chairs, wanting to know the entire situation. While it made me feel a tad bit better being able to vent about the situation, it did nothing to help us at the time it happened.
Since then we have had brushes with nausea and other problems, but nothing as severe as his reactions to Imuran. He has now undergone a second round of chemo -- at $50,000 a pop. We have not heard if Medicare is picking up this expense or not. Mark is supposed to go through chemo every six months -- four infusions one week apart. His next set should be coming again this fall. While the first round did seem to help, it does take three months or so to take effect and only lasts for about three months after that. We keep debating whether the cost involved is really worth it... Althoguh Medicare did cover the first round at U of M (We decided to have the second round closer to home to help avoid travel costs, but that came with its own set of problems. One cancer center refused us even while we were sitting in the room waiting for him to be hooked up, and the hospital we ended up going to was also unsure of how to bill fpr the drug since use of it for Mark's disease is considered "off label" use and no insurance in under obligation to pay for it.)