Saturday, September 26, 2009

"Feeling good, Luis!"

A quick update: in the last week I've definitely started feeling better and better with time. This week I headed up to Tahoe ("Go Team Tahoe!") with "H-Lo" and "Ansela Adams" for a few days of recovery. It was great for them to pull me along and get me out and about, and I think just forcing a bit of activity has helped boost my energy. I still need more sleep than the old days, but I don't seem to need major midday naps anymore, and I'm ready to get some more exercise. I'm going to try to get back into working as much as possible, and hopefully when I begin treatment it won't knock me back down.

Speaking of which, there is now a plan. I will get another MRI on Oct. 7th, and then meet with the oncologists the same day to discuss the results and next steps. Assuming that the tumor is still shrinking (or at the very least, not growing), then the likely plan is to start the traditional monthly cycle of chemo: 5 days on, 23 days off. The dosage will increase dramatically over what I was taking during radiation, but will depend on how well my immune system responds. I will probably also try to get another appointment with the UCSF doctors to confirm the plan soon after it's laid out.

I did try to get a good chunk of exercise in today, going for a bike ride with my freighbor. It wasn't a lack of energy that sabotaged the ride, though. It was the three flat tires I got. We did eventually make it 25 miles...over four hours. Yes, we could've walked almost as quickly. Wouldn't Lance be proud of me? Actually, he has minions to change his tires on his rides.

As for the's not coming out anymore in clumps. I'm still back and forth on the decision, but not particularly concerned about it either way. It's more just something arbitrary to think about and keep my mind off important things. I'll wait another week to "decide". More important is whether I should use the creepy mask on Halloween....

Friday, September 18, 2009

"I'm sick and tired of being sick and tired"

That's pretty much a description of my current status, summarized for me by "H-Lo". Yes, I have finished the initial 6-week treatment, and yes, at some level it should feel like a wonderful accomplishment. But to be honest, I haven't yet felt the release I was hoping for. Unfortunately, this led to a slight relapse, since reality fell far short of my expectation. At the same time, my fantastic friends and family wanted to send positive messages my way and celebrate the latest milestone, and I wanted to join in on the celebration. Having "fallen short" in that effort too...well...let's just say that yesterday was a rough day. I do want to be clear that I really appreciate everyone reaching out to me with positive thoughts on completing a tremendous benchmark. And I do understand that there are no external expectations regarding how I should be feeling. I know you'll all hang in there as long as necessary, and since I definitely sense things are moving forward, I'm pretty sure I'll catch up to everyone soon.

I was told by my radiation oncologist that in fact there is generally a phase delay for the reaction to the treatment, and that I might feel worse in a week or so. She also commented that given how well things have gone for me so far, there's a good chance that the typical phase delay might not apply as strongly to me. So, lemme 'splain. Wait, no time to 'splain. Lemme sum up: I still have an excuse for not always feeling great and "super social", but I can still be optimistic that things will get better.

Now for the fun part. On my last day, the techs who have been killing my tumor every day for the last 6 weeks gave me a little certificate in honor of the completion of my treatment. They were a wonderful team, even though I hope I never have to visit them in the cancer center again.....

I also got to keep my creepy "mask". Should I sell it at the Folsom St. Fair or keep it for Halloween?

Thursday, September 10, 2009

Week 6, here we go!

Started the final week yesterday with a serious bonus. "H-Lo" brought me to the treatment, and then took me to my kayak friend "Neecie's" workplace where she had some frozen tomato soup for me. Turns out she works right next to....Guittard chocolate! She managed to convince them to take "H-Lo" and I on a quick tour. The place smells incredible, and we got to see all the different kinds of things they make. The guy who guided us is friends with "Neecie", so he showed us everything and they even gave us a few complementary treats to go. I almost felt like I should thank my tumor for this.

But on second thought, let's keep hammering it away for another week until it realizes it's overstayed its visit to my brain.

Tuesday, September 8, 2009

The home stretch....

Today was the last day of the "general" radiation treatment. Tomorrow I start my "booster" treatment, which is when they focus more tightly on the center point of the original tumor. Most people I've talked with said that this coming week is less intense and the beginning of the end. Can I hear a "hell yeah"? This past weekend was pretty rough, and I really want to thank my friends for all the meals, shopping, and general positive attitude they've offered to help pull me through.

Of course, I still need to decide whether to shave the head, and that depends on how many more chunks shed out to blanket my floor in the next week or so. I was going to post some photos allowing people to vote on whether I should shave it off or just leave it (clearly weighting the votes according to how much I trust the voter), but that wouldn't keep this blog quite anonymous enough. So for now, let's look at it a little more creatively. Since I've been identifying this whole process with Wolverine from X-Men, perhaps we could vote for either Wolverine or Professor Xavier?
Except there's no chance in hell I'll be looking like Wolverine's photo shot anytime OR bicep.

The other option was posed by my friend "T-bone-money" who sent me two photos of Andre Agassi. That seems reasonable. So...which version of me would people like? And the headband counts, since I do need to cover the parts that have fallen out....though the long-backed mullet is unlikely....

On another note, there was an amazing episode of Fresh Air recently about comic relief for cancer patients. It's not just for the young....

Thursday, September 3, 2009

Week 4 - How time flies...

...around in circles. While I'm not blown away at how I'm already 2/3 of the way done, overall I can't complain too much (that is, I can keep complaining, and it will never be too much). Actually, I am feeling pretty good about how I'm doing considering the situation, and know several people in far worse situations. Things seem relatively stable in terms of my conditions. I still haven't completely nailed down when the fatigue is going to hit me hard, but I'm starting to feel like it's more related to my food energy level than my nap time. It's difficult for me to tell how hungry I am until I put myself in front of food. If I keep eating, I tend not to be as tired regardless of how many naps I took. In the past, my stomach was very good at telling me when I was starving. Now I need to pay more attention to my brain I guess. My friends have been pretty good staying on top of me with eating, especially since many of them have their own serious energy crashes and know exactly what it's like.

The main issue is a kind of general fog which enhances my already existing laziness. I'm also losing connections to names and words again, the same thing I noticed before and directly after surgery. I'm less worried about this now, since I know what is causing it (radiation), and know that I can likely reconnect with the lost vocabulary once I'm done with this part of the treatment. It is extremely frustrating, however, but does explain to everyone out here why I'm no longer so naturally humorous and witty in conversation....

I did get to check out my latest MRI image, and overall it looks pretty good. The cavity has closed significantly (sorry, no storing gumballs or chocolate there), and there was no sign of highly active cancer cells at present. The previous deviation of the midline of my brain has mainly straightened out, and most of the ventricles on my left side are now opened up and look normal. There is still a dark region adjacent to the original cyst and tumor. This region is likely a mass of some kind, but it's not clear what it represents. It might be a lower grade of cancer, dead cells, or something else. Either way, my radiation oncologist is going to include that region in the high intensity treatment during my last week.

The remaining plan is to continue with the current radiation treatment until next week (excluding the holiday) and then for the final week switch to a "booster" version where they will focus on a smaller region of the tumor. Once that is done, I have a two week "vacation", another MRI, and then, assuming everything looks good, I begin the long-term period of 5 days of chemo, and 23 days off.

Now, to answer a few questions:
No, I did not get a haircut, and no, they did not re-shave the part where they did the surgery. Will I shave my head? That depends on how it looks after the treatment is done. Basically I'm not too worried about having to shave my head, since I have so many shaved head friends who still look really good. I do NOT, however, want to look like Beaver Cleaver, who was once told he looked like Wilson's airedale when he had the mange....