Overdue Update

I've been home from New York for a little bit now. What was looking to be a dire situation has temporarily subsided, giving me some time to weigh my options and come up with a plan going forward.

To recap: the latest trip to NY was not exactly a success. The pain in my hip turned out to be from a new tumor on my right hip that was about 2 centimeters big. We found this out at the time I met with Dr Feldman and figured that my time on the ARQ trials is over. It's time to move on before the cancer can spread further. This was obviously disappointing, but still something you have to realistically prepare for when going into a clinical trial of any kind. Because of the new risks associated with my level of physical activity (possibility of fracturing my hip) and awaiting results of a more comprehensive CT scan, I was told to take it easy, take a cab, and get to the airport with as little exertion as possible.

The CT scan ended up being too late, and by the time I could get a cab back to get my stuff and make it to JFK during rush hour, it was too late. I was about 30 minutes early for my flight, but still too late to check in for it. So, bummed out, and just wanting to be home with Karen, I looked for a place to hunker down at the airport for the night. Delta booked me for the same flight the next day. I did not have the energy to make it back into Manhatten and every hotel next to the airport was at max occupancy so I didn't really have a choice.

The airport staff told me that terminal 4 was the place to go. They were right. I went over there and it was full of people, most of whom having missed international flights because of the volcano stuff, were hanging out for the night as well. I grabbed a bite to eat and found one of the cots that they had set up for people to sleep in and managed to sleep for a couple hours.

Early in the morning, I got a call from a friend at a testicular cancer forum that I post at sometimes. She was worried about me being at JFK alone and so she paid for my cab ride to Newark Airport, where she could take me back to her house and make sure I was okay. A couple other awesome people from those forums came to see me as well. It was yet another amazing act of kindness that has been shown on my behalf. I'm extremely blessed to know such people. I do not know how I would have made it through that day without them.

On my cab ride over I got a call from Dr. Feldman's nurse, who had the results of my CT scan. She told me that a tumor had wrapped its way around my lower spine and was dangerously close to finishing the job and paralyzing me. I was extremely distressed about this new news, obviously. The nurse also figured that I was back in Salt Lake already, and was concerned that I wasn't because my ability to fly home safely was now in serious question. I was told not to lift anything at all and to use a wheelchair as much as possible.

After much deliberation and consultation with different doctors, Dr. Feldman's office determined that I should be okay to get on my flight that night. Karen and I were really glad about that. She was prepared to come out and be with me in the ER in New York but we knew it would be much easier to just come home. My friend that I mentioned earlier was kind enough to swing by a pharmacy to pick up some anti-inflammatory drugs that Dr. Feldman thought might help me on the flight. She then drove me ALL the way back to JFK during rush hour. I'm sure it was not a fun experience for her.

We made it on time and we made sure that the airport staff carted me to my gate and carried my bag. I got on my flight and made it home alright. Upon landing and getting carted to the front of the airport with Karen, we drove to the emergency room. I was admitted pretty quickly and medicated. We spent the night with a lot of family and talking, not much sleeping. In the morning I was taken for a spinal MRI and the tumors were located so that they could be radiated.

We are radiating three different spots. The dangerous one on my spine, the painful one on my right hip, and a smaller spot higher up on my spine. I'm further into the treatment now and we're pretty sure that it's working because my pain has lessened significantly. I was let out of the hospital early Monday and continue to go in for radiation as an outpatient. I'm still trying to take it easy and not lift anything because I don't know the exact condition of my spinal tumor.

Simultaneously, I'm working on what to do next. Once the radiation is finished and I am stable, I am going to need to start a chemotherapy regimen. This is definitely not what I wanted. I had hoped so much to be in a state of at least partial health during Karen's pregnancy but that doesn't seem likely anymore. With my AFP pushing over 6000, we need to act quickly before the cancer grows too large. There are three or four different things I'm deciding over with Dr Feldman and Dr Chandramouli right now. The biggest issue is to figure out which chemotherapy we will get the most out of while maintaining my blood counts. My bone marrow has been so suppressed that it can't handle the most aggressive regimens anymore. So, finding a balance will be the key here.

Thank you so much everybody, for the kindness. In whatever form you've shown it to Karen and I. There have been so many of you reaching out in friendship and love during this time of need. I owe a lot to my friends in New York for getting me home safely. Thank you guys. I hope I can repay the favor someday.

I apologize for the lateness of this update and will try to be more timely in the future. When a chemotherapy regimen has been chosen, or something new comes up, I'll be back.
Sean