Drainage does it again

You gotta love having artists as friends!

As the world turns....

The last few days have been spent trying to figure out what the best option for treatment might be. Most of it was spent on the internet, and I can't imagine how people managed to care for themselves before it existed! Sorry, I refuse to embarrass Gore by misquoting him, when in fact *I* invented the internet. Or at least - I work for the company that helped invent it....

But I digress. Today I had an appointment at UCSF talking with one of the fantastic oncologists there, Dr. Clarke. I was ably assisted by Gabrielle, a ridiculously amazing and caring "survivor" who has dedicated a lot of her time to battling brain cancer. Together we whittled down the options to a plan that seems to make sense - until you throw in my insurer. Kaiser. Up until now I have actually been very fond of them, and stuck with them even though I had an opportunity to change health plans at work. I'm really hoping not to regret that decision, but so far I've heard far too many comments on how the best clinical trials I can find, those with the most likely chance of long term survival, will likely not be supported by Kaiser. I am certainly not going to let that stop my choices, and we will see if they would really be so cold. I'm hoping they won't.

In terms of my list of choices, I am mostly looking at several trials involving vaccines created from the tumor itself. One trial is at UCSF, and two are down in Los Angeles (AE, I might be visiting you after all!) There is another Phase 1 trial involving retroviruses, paid for by the drug company supplying them (so Kaiser wouldn't deny that one). Unfortunately, since it is Phase 1, there isn't much evidence that it will work, and not enough evidence that it won't cause problems. I'll be talking with the head of that clinic at UCSF on Monday and maybe that information will persuade me one way or the other.

I really appreciate the kind words passed my way by everyone out there. It means a lot!

$%#^&*#%$^@*!!!!!!!

While I'd much rather be writing all of you to tell you something wonderful like "I won the lottery!" or "I was appointed Chocolate Czar!", unfortunately as many of you know, that's not the case. I had my usual MRI on Monday, and through a phone appointment on Tuesday found out that the stupid tumor is growing again. I haven't actually seen the MRI yet, but supposedly it's in the range of 1-2 cm. It grew fast. The past few days have been spent examining the possible treatments, and tomorrow morning I have an appointment with UCSF to see if I fit into any clinical trials that look interesting. Otherwise, it's going to be some kind of surgery (either normal or radiation), then treatment with Avastin and some kind of chemo (not Temodar). Did it come back because I stopped the Temodar? My oncologist didn't think so - it wouldn't have come back so quickly. The director of the support group said, "Don't even think about it. It doesn't really matter anyway."

What effect this will have on my lifestyle depends on what treatment I end up going through, but what affect it has is very clear....

Now be honest....

How would *you* react to someone saying "I have cancer, but I'll buy you a drink."

And I used to think dating was hard....

(Here is the full article. It reminds me of Alicia's amazing, yet also terribly sad, story)

When the temporary becomes permanent

Perhaps the boil was a blessing in disguise. It forced me to skip a full cycle of chemo,which really brought home the level of misery the process imposed on my life. While it is still a challenging decision, and I hold no judgment against any who would maintain their repeating treatment, I've decided that for me taking a long term break is the best path. There is no clear evidence for or against maintaining the treatment, nor for breaking off it. But there is slightly better evidence that my life will be more fulfilling and simpler to manage without being chained to chemo. And yes, I know permanent is a very strong word. But there is strength in optimism.

Now if only that stupid boil would remember that it is supposed to be temporary....

On a forced break

I was supposed to start another cycle a few weeks ago, but a boil on my face put the kibosh on my chemo. Skipping a cycle has made me reconsider the decision about whether to continue on with the chemo at this point. Stay tuned....

In the meantime, here is an amazing performance called "Apoptosis is my favorite word" that is about my friend's various encounters with cancer and cancer research.

Derelict in my duties

I know I haven't written anything for quite awhile. Which generally indicates that the rest of my life has taken over and nothing significant is happening. At least as far as "Tha Tooomah" is concerned.

I'm still taking the reduced dose, starting on Cycle 15 Monday. The last cycle felt even better than the previous. As before, there was a little fatigue, but I managed the digestion well and was able to work almost the complete week. It does make me wonder if the chemo is actually doing what it's supposed to do, but then again, there isn't clear evidence what a higher dose would be doing right now either.

The Dorland Hospital is in full swing right now, with two cancer patients, one of whom is also fighting a new boil on his face (can you guess who that might be?), and another patient with a recurrent autoimmune problem. My freighbor has become the local medic, ambulance driver, chef, and therapist, all while still working her normal full time job. If I weren't a Jew, I'd say she's a saint.

Which brings up the strangeness of the different cancers. The other cancer patient at the Dorland Hospital is currently being treated for a return of leukemia. His chemo is way more invasive than mine. His immune system has been beaten down to almost nothing, and his blood count is so low he's deprived of sufficient oxygen. Yet he's managing to push forward as well as he can. I'm not sure why I'm mentioning this other than to say that right now, he needs support more than I do. I wish I knew what could be done.

There is one thing that hopefully will help. If you recall, last March we held an ultimate tournament to raise money for the Lance Armstrong Foundation. The LAF works on combating cancers of all types. Two weeks ago, there was an event in Austin called the Ride for the Roses, featuring....Lance Armstrong! I was invited (because of generous donations from many of you) and I brought along one of the keystones to the tournament, Renata. The way the event worked was as follows. Those who contributed a certain amount achieved a certain "level" of VIP status. I was at the lowest level. However, our event as a whole drew in what would be considered the highest level. While we couldn't convince them to bump us up because of that, we did get a few extra perks from Colleen, the amazing grassroots organizer for the LAF. While we were there, we promoted our event by handing out some discs and chatting it up with as many people as we met. The event overall was very inspiring, and motivated us to try to keep our tournament moving forward and possibly spreading across the country. We've already reserved the fields! Remember, there's not a person alive who isn't affected in some way by cancer.

And as it turned out, I got to meet Lance after all....

Another "First"

Back in July was my "Month of Firsts," but it didn't end there. Today I added another one. Previously a biweekly event, today I had my first massage since the diagnosis. Relaxing? Only after the fact. But it is deep tissue massage....ouch.

Yes, there are places where "the Big C" is funny

Like on the Daily Show

Fascinating!

Awhile back, I suggested the possibility of somehow attaching a photocatalyst (TiO2) to the cancer cells, and then illuminating it with UV light to kill the cells. I've worked on similar projects for cleaning boat hulls or purifying water. Why not kill cancer? Of course, usually when I come up with some great idea, I find out that it's already been done. In this case, as you can imagine, that didn't really bother me. Even so, it begs the question, how easily can the photocatalyst find the tumor? On top of that, how easily can it be illuminated? Through the skull? Not likely.

And then I see a story about a local neurosurgeon here at UCSF, and suddenly it feels like maybe it's all coming together.

I love science.