Tuesday, February 24, 2009

Hoag Study Results

We got a call today from Christina with the Hoag Center, and unfortunately they were not able to develop a vaccine from the tumor sample we'd gotten from my liver. Fibroblasts(?) apparently made doing so initially difficult and eventually made it impossible.

There could be a possibility of trying to donate another tumor sample, but to do so I believe I understand that I would need to be off chemo for some time. And again, if I understand correctly, this is because the chemo is trying to kill the tumor, and the Hoag study is trying to grow it. So it might remain as a possibility, but for now we'll just ride through the chemo and I'll be hoping that it works as intended and systemically rids me of the cancer that I currently have. If I understand melanoma, though, even that may only be for a certain period of time. So I still have the same options as before (except I already have a hat).

I need to update my calendar with my appointments: I've got a CT, a visit with Dr. Amatruda, and more chemo scheduled for the second week of March. I expect to be discussing the Hoag study results (or lack thereof) with Dr. Amatruda in addition to the results of that scheduled CT. The CT will be an 'after' to compare with the 'before', which will tell us the effect (or lack thereof) that the chemo is having for me.

In the meantime, I have the 'fun' of trying to get my affairs in order. There's a lot of little things to try to write down and plan. I don't try to let it bring me down, though. I have generally remained in good spirits and plan to keep it that way.

Monday, February 23, 2009

Appointments, Discussions, and Hair

Angie accompanied me to my visit to Dr. Amatruda last week. She had a particular question in mind. The question didn't have a particularly great answer for her to hear, but she needed to ask it and have it answered. Essentially the question was, "How long?" Dr. Amatruda began explaining, and then gave me a bit of a look to ask if it was okay to be blunt. The short answer he gave was "nine months".

She was very shaken, and I've put off writing this for a while now. I suppose I've understood that answer, but it was really the first time I'd heard it in those terms myself. During the course of this thus far, I've learned how the numbers game works, and I choose to fight my natural-born pessimism and look at this in an optimistic light.

As it so happens, tonight I found the following in one of my search feeds:
Nine months? If the statistics for Stage IV malignant melanoma applied to every patient, I wouldn't be writing this post. I would be dead already as the statistics point out.
I followed the link and found the following chart, which better expresses the optimistic view I try to focus on:

The odds are what they are, but I don't see any zeros.

Having confronted the numbers in this dark way, Angie and I have had many difficult talks regarding a less-than-optimistic outcome for me. "Hope and pray for the best, but prepare for the worst", so to speak. It isn't the most enjoyable exercise, but it's not something that scares me at this point -- Angie is a different story. We'll keep at it; it would be good if I could put my procrastination off a bit though.

On Friday I had my second chemo. This one went much like the first, with me napping through most of it. The staff is friendly and fun, so it's not an unpleasant experience. Afterwards I wasn't as tired as the first time around, but maybe that's because I had some idea now of what to expect. Saturday I may have been a little bit too much "business as usual" because I was pretty worn out on Sunday.

Going back to a moment before Tuesday's appointment last week, my hair had begun falling out in clumps. It continued, and by the end of the week what was left was looking pretty ratty.

So I decided to go for a mohawk with the hair I had left. I think it turned out pretty nice -- Heather said she really likes it.

Sunday, February 15, 2009

Maintaining the Status Quo

I suppose I should have posted some sort of an update a while ago, but [insert lame excuse here]. Here's how things have gone since my first chemo session.

Friday, Jan. 30th I was pretty much just taking it all in and being tired. Saturday I didn't know how I should be feeling either, so I was dragging quite leisurely. Sunday was the Super Bowl, and Angie and I enjoyed the game.

Monday I was headed to work, but I wasn't sure how that would go. By 3ish that day, I was feeling pretty worn out; I stayed until about 4:30. One of the reasons I left early was that in addition to being tired, darkness still arrived by 5:30 (I think). Since I have always gotten quite tired when driving at dusk, I figured it was in my best interest to duck out a bit early.

This first work week I was going to bed about 8 o'clock. There I'd flip channels and feel pretty worn out. I wouldn't be awake as late as "usual", probably falling asleep before 11. As the days wore on, things slowly returned to my normal. I was eating pretty much the same thing I'd had previously, and didn't have any nausea.

And so it has been. I've been doing good ol' dull and boring stuff like trying to prepare my taxes, framing and hanging pictures, and basically going about things pretty much how I had done before. I've been trying to figure out some Facebook stuff as well: picture uploading and what-not.

More or less, that is my lame excuse from above. There has been nothing really interesting to post about.

Update: Or, oops I forgot...

We did have a very nice Valentine's Day. I ordered take-out from the Texas Roadhouse. For the occasion I even cleaned up with a haircut and a shave (my hair hasn't fallen out yet, but a shave now lasts for days and days).

The food was excellent, and I shielded Angie from the feeling of being herded like cattle in the restaurant. We were both still full from those delicious steaks at least 6 hours later.