[9-08-08] Motocancer

[4:42pm]
     We left for Stanford today at 8:20am... we just got back. That's almost 9 hours on the road! This time, Dan drew the short straw -- he was the unfortunate cancer courier for this trip to Stanford.
     It started with a plea to recover my motorcycle. For the past month or so, my motorcycle has been left abandoned in the city of Berkeley. Sometime last week, the permit expired, and I was constantly worried that the motorcycle would be towed... Additionally, without a motorcycle nearby, I am even more helpless without local transportation. Fortunately, Dan agreed to help me transport my motorcycle in his van (Thanks Dan!). [The reason I don't just ride the motorcycle from Berkeley to Santa Cruz is because a trip of that distance is very tiring. My family prefers that I be safe and avoid exerting myself too much while driving a motorcycle.]
     Since Monday was also the day of my Stanford appointment, Dan was recruited to take me there as well. Unfortunately, Stanford is hardly on the way to Berkeley...

     When we arrived, I was given the whole BMT spiel all over again. I re-learned about the risks, the difficulties, and the treatment details. Some new things I learned were about the long-term side effects. I always thought it was naive to assume that I would beat this cancer without some long-term battle damage... it appears that I was correct. Here's what I learned:
     1: I will be infertile. I thought this was more like, "there is a 25% chance you will remain fertile." But this nurse seems pretty certain of this.
     2: There is an 18%-20% chance of lung damage due to the Carmustine. It is possible to reverse this damage if caught quickly. I don't relish the thought of coughing the rest of my life.
     3: 10% chance of developing a secondary cancer.
     4: Unspecified chance of liver/kidney damage, since all these drugs work their way through the liver or kidneys.

     That's most of what I remember. Oh, and maybe they have to mention it or something... but it is somewhat disturbing to be repeatedly told about the possibility of hair loss due to a chemotherapy agent. Uhm... Hello? I know... I lost it all already.
Oh well.

     After that, she began talking about the particular clinical study I was to be a member of. In particular, I noted what she said about the study preceding (parent study?) mine. The previous study lacked two chemotherapy agents and had greater doses of Carmustine. She cited a 5 year remission rate of 50%. When I told her that my doctor expected around 80%, she seemed skeptical. I don't like that. However, perhaps that is because she lumped me in the same category as all Hodgkin's patients. Being stage IA Bulky has got to up the odds.

     Throughout the meeting, the nurse expressed her shock that I *still* had no "BMT calendar" drawn up. She called my scheduling nurse, and allowed me a quick visit with her.
     My scheduling nurse said that a calendar could not be drawn without me finishing certain preliminary tests. (Why haven't I taken had these tests scheduledearler? hmm?) Fortunately, I was given an opportunity to save lots of time: she could schedule me for my last test at 2pm (an echocardiogram), and have my calendar available for pickup then. I agreed, I had no choice... though it would be difficult.
     You see, the current time was 11:30am. The echocardiogram was at 2:00pm. That leaves 2.5 hours to drive to Berkeley (through San Francisco), by some lumber for a makeshift ramp for my motorcycle, load my motorcycle into the van, and return to Stanford. It was difficult. In the end, I arrived at my echo about 30 minutes late. And yes, the receptionists gave me a very hard time about it. I felt bad, but still, it was a victory.
     Well, not completely. After the echo, my scheduling nurse was too busy to create a calendar for me. Hopefully, I'll receive it via email this evening.

     So, that was my day.

     Also, unfortunately, I have more to add in the "side effects" department.
     My throat hurts when I swallow. At times, it hurts my throat even when I speak. At night, the irritation seems to cause me to cough a bunch. Accordingly, I'm gulping down the "lidocaine mouthwash" every four hours. It helps, but doesn't seem to get rid of it... Barbara believes I might have an ulcer of some type in my throat. This has got to be the second worst side effect so far (nausea, of course, being #1). I'll have to make an appointment if this doesn't get better soon.
     Additionally, most of my chest hairs have fallen out. The problem is, they also haven't stopped growing. So, I've got a bunch of red spots of ingrown hairs. eww. Sounds worse than it is though... like small bug bites.

     Kinda makes one think how bad it'll get... Should be interesting...