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.

Decisions...decisions....

...oh! Pay me. Lawyer's salary, please. Ok, apparently I can remember how a commercial goes, but I haven't the slightest idea what it was selling. I assume it was some kind of game, but I can't remember any game that involved decisions and salaries and lawyers. But I digress.

In our last episode of "Tumor Man", he was told that he had the option to stop taking the monthly chemo treatment. Desperately we all needed to know! Would he pull away from the *medication* that some think is his greatest hope at beating back the evil cancer? Or would he continue swallowing the toxic monster, reducing himself to a mere pulp for one week out of every month, never knowing for sure if the "medication" is living up to it's expectations. Which way will he turn?

As with most decisions, "Tumor Man" opts for whatever keeps the most options open (in spite of "Tumor Dad's" advice long ago that keeping options "open" eventually closes many of them). How is it possible to keep your options open? Turns out one answer is to reduce your dosage. "Tumor Man" noticed that a few of his comrades were taking less Temodar than he was, but they weighed more. That's just not fair! So "Tumor Man" requested a reduction in his dosage to see if he could handle the cycle better. And lo and behold, it was somewhat of a success! There's still some fatigue, and his digestive system gets shaken up just like before, but his energy seemed much better than with the higher dose.

Will "Tumor Man" stay the course? Or will he decide that the lower dose probably has even less impact against the evil cancer empire? Stay tuned for the next episode!

Got the Will to Survive

Beautiful song, beautiful cause:
http://www.youtube.com/user/GottheWilltoSurvive

A month of "firsts"

Last weekend I finally got to take my first backpacking trip since "the diagnosis". My freighbor, Drainage, and I all headed off to one of my favorite spots in the Sierra - Emigrant Wilderness Area. It was also the first trip to Emigrant without Bobsey, and without Chana. I suspect there will be many "firsts" in all of those categories. At least for the upcoming year, as I hope to move through it with some semblance of normalcy.

Speaking of which, the latest MRI looked unchanged! The two disappearing dots did NOT reappear, and the remaining dot might actually just be a blood vessel. Though I'd like to still see it disappear sometime soon. The generalized grey blob is still there, but hasn't increased its size or contrast. So, in conclusion, things really couldn't be much better!

I just completed cycle 11 (which happens to be my lucky number - as much as I believe in lucky numbers....) That means that my next cycle marks a complete year of chemo. This didn't mean that much to me until my oncologist told me that I might want to start considering whether I want to stay on the chemo or stop it. There wasn't a lot of clear information on what to do, but it was exciting just to hear that I have a choice in this. The chemo has been frustrating my life in ways I never expected. The idea of letting it go sends chills down my spine. I will be talking with several doctors and experienced survivors to get their opinions, but I am willing to accept other research information anyone might find regarding the efficacy of long term treatment by Temodar for grade 4 glioblastoma multiforme. My family will act as a buffer to keep me informed without being overwhelmed by the typically negative and useless statistics.

Meanwhile, it's time for bed. I'm wiped out from having just finished bringing my first niece/nephew visitor on my first Cache Creek trip since the first, and hopefully last, diagnosis of a brain tumor.

One year ago today...

...I was diagnosed. If you go by the "day" and not the "date".

Let's review the past year:

• Leaving work early on Tuesday, July 7th, I was dragged to the ER by my friend "H-Lo" who had a feeling something wasn't right
  
• My "weird feeling" was confirmed by a CAT scan showing a huge tumor
• I had surgery the next day as my family was flying out to see me
• My family and friends took care of me as I recovered from surgery
• I began a 6 week daily radiation/chemo treatment while still trying to work part time
• I still managed to visit my family over Thanksgiving and a trip to Yosemite over New Years
  
• My friends pulled together an ultimate frisbee tournament to raise money to fight cancer (and raised over $45,000!)
  
• I watched many of my friends make significant moves in their lives - starting relationships, getting engaged, having kids, changing jobs, moving to a new town - while I fought to bring myself close to where I was prior to the cancer
• I learned what it's like to have a pre-menstrual cycle through my monthly chemo treatment (though I never had to deal with the tampon side of things)
• I lost a dear friend who took his own life, and in the following week, lost my dog Chana who was a beloved family member for over a decade
• That same month, another friend at work was diagnosed with breast cancer and underwent a complete mastectomy
• Soon after that, my apartment building was converted into the "Dorland Medical Clinic," with my fabulous "freighbor" acting as the chief of staff, taking care of me, her father, her step-mother, and her brother, who had a terrible fall that could've taken his life
  
• I finally learned to kayak (again)
• My MRIs continued to improve giving me hope and optimism looking forward
• And today, I went to work, and then headed off to play ultimate - just like I was supposed to do one full year ago. And yes, we did win.
  

I have to say, overall it's a little bit odd. I feel like I should be having a momentous occasion right now. I think back to this day one year ago, and how I felt and what I was going through. It's hard to believe it's been a year already, and yet that year took a really long time while I was passing through it. Next week I have my next MRI, and in a way, that feels more momentous than the anniversary. But in the meantime, I still feel incredibly lucky, and I'm really looking forward to a much better "year two"!

Cancer: It can save your life?

A statement like that would have made no sense to me a few weeks ago. So many of Bobsey's friends, myself included, have been battling frequently for an explanation of what happened; a reason for why he did what he did. But there have been a small number of people who, at some point in their lives, sat in the same seat as Bobsey and saw the world from a similar perspective. These people have provided a glimpse down the hole some people find themselves descending into. They also provided the tools that are needed to climb out. In the more typical case, it's a question of recognizing that the climb out can take as long or longer than the slide down. And that changing your perception and opening yourself to the world is tremendously important. The less typical solution?

Get cancer.

Yes, you heard me correctly. Recently I was telling a fellow survivor about how sad I've been lately thinking about Bobsey, and she mentioned that she too had found herself face to face with the most fundamental existential question - why is my life worth living? She felt as though she did not contribute sufficiently to the world around her, and that there was no reason to exist. Life was hard, death was easy, the answer was simple. Until she was diagnosed with cancer. Somehow, facing death so directly, but not instantaneously, also forced her to face life. She gained a new best friend in gratitude, and began to love herself. Her pain could have led her down the dark well where her only solution would be permanent. Ironically, cancer illuminated a pathway back to the surface, allowing her to appreciate all that she has available to her. Except, maybe, the cancer itself....