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.

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....

Fight to stay alive or fight to live?

I have been fighting for my life for almost a year. But am I fighting simply to stay alive? This thought has been crossing my increasingly murky mind since I learned about the recent death of a wonderful friend. "Bobsey" held a special place in almost all of the chapters of my life that bring me joy. For virtually every backpacking trip, every outdoor movie night, every holiday or birthday gathering, every Flashdance, every Cache Creek rafting trip, every ultimate game....every "thing", Bobsey was there. But he was always more than just "there". Every space he occupied was illuminated by his sharp wit, his warm smile, and his dizzying recollection. He was faster than Google, and able to answer all trivia with a single line. He was an incredibly caring person who was always willing to help those in need. He was the first to arrive at every party so he could help set up, and the last to leave to help clean up. He moved several people several times, always with a smile and a wonderful attitude.

A couple of weeks ago Bobsey took his own life. It seemed as though all of the joy he spread to the lives of those around him was not enough to convince him to keep pushing forward. My initial emotional reactions were anger and confusion. Bobsey, I am doing all I can to stay alive because of the joy people like you bring me, and you did all you could to end your life? Why would you do such a thing? I was already coping with making sense of my own nonsense. Why did cancer choose me? Now I have the added confusion of a dear friend choosing death.

With time, and several long conversations with others who love him, I've begun to accept the fact that we will never fully understand the choice that he made, but that it was his choice. It made me examine my own personal choices more carefully as well. I've often wondered if I'm the "typical" cancer patient, or if there even is one. I think most people, including the medical community, assume that the primary goal of a patient is to stay alive. I realized, after thinking about Bobsey's choice, that in the back of my somewhat Swiss cheesed mind I never thought of that as my main purpose. My main purpose was more than just living, it was to regain a worthwhile life, whatever that might mean. It explains the early arguments I had with my medical team when they would wonder how I could be so thrown by some seemingly small detail they forgot to mention (some item that would merely effect the quality of my life). After all, in the big picture, I'm still alive!

I am by no means trying to validate Bobsey's choice. Some of us have thought that he made this choice because he didn't want to be a burden on the lives of others. If so, his action could not have produced a more contradictory result. I can only hope that all who love him and are loved by others realize the agony they can inflict by taking their lives. I guess I'm just wondering where we draw the borderline between wanting to stay, and being ready to go. This question has become more and more acceptable for those facing severe physical and medical problems, thus giving rise to hospice care. A perfect example was Alicia, a wonderful, energetic young woman who recently passed away.

Yet, a physically healthy person choosing death still provokes anger and even religious punishment. Unfortunately, too often seeking help for mental trauma is also frowned upon by society. While I had the option, nay the requirement, to address the physical distress I was experiencing, Bobsey might have felt trapped, thinking he had no other options for a cure. Unfortunately for the rest of us, here in San Francisco this was an illusion. He did have options, and there was a path. Another lesson we all need to recognize.

As for my battle to "live", I currently count myself among the lucky. I am lucky to have a wonderful community of friends and family around me, and I am lucky to recognize and appreciate them. Last week I had an MRI. Leading up to it I noticed for the first time in awhile some trepidation. As many people know, a positive attitude is our best weapon to fight cancer. Well, that and chemo. But my attitude had been taking quite a beating since my last MRI, due to several challenges dropped in my path, and I wasn't sure where it would lead me. The results were better than expected. One of the "white spots" looked about the same as before, and two of them seemed to disappear. Conservatively the changes are all in the noise, and basically nothing is clearly growing. This is good news. Optimistically, things may actually be improving. This is great news.

And yet, as I think about my next step towards a joyful life, my first backpacking trip since the diagnosis, I realize it will be without Bobsey. This brings tremendous sorrow, more than I've felt even regarding my own condition. And so, while I'm still predominately fighting for a "worthwhile life", permit me to redraw the borderline slightly towards "simply living". Because I can't imagine causing this much pain to the people I love.

Rest peacefully Bobsey....

I'm walkin', yes indeed....

Yep, I finished my cycle last week and turned around relatively quickly, just in time to take part in the Brain Tumor Walk here in San Francisco. I know, you're picturing a bunch of nasty, spidery looking brain parts with legs on them cruising the streets searching for victims. Sorry to disappoint. It's really just a fundraiser and community day to support research and patient services at the National Brain Tumor Society. There were a few thousand people there raising hundreds of thousands of dollars. The "survivors" wore blue shirts and the "supporters" wore white, but lots of the teams had their own required costumes, greatly adding to the entertainment value. It was both comforting and a bit...humbling? disheartening?...to see several survivors, some around for many years, walking alongside friends and relatives of those who were lost. Regardless, I'm convinced that I will be there next year.

The reason why I'm posting today

I'm posting today because I needed to look at my blog to see what I posted before. Did I always feel like this when I was on my chemo week? Especially after I've stopped taking the pills? Was I always a bit nauseous? Did I sometimes throw up days after I was done with the meds? Apparently the answer is yes, a mere two cycles ago. Funny how quickly I "forget".

An article that really says it all...

...well, maybe not all of it. But it does actually say a lot. Especially at the end.

Thanks big sis!

A sad day for an inspirational person and her friends and family....

I used to like roller coasters, didn't I?

I guess they never quite felt like this. The drops used to be the fun part, and the climbs brought anxiety. Well I've been on a bit of a different ride since we last talked. We all know how the drops feel for me now, and frankly, I'm not interested in explaining where they came from over the last couple weeks. So let's stick with the climbs.

You've already read about the Huck Cancer tournament, but it deserves another shout out for how well it came off. On top of that, another ultimate friend, "Mo Po", has directed his annual March Madness competition to raise even more money for the Huck Cancer team. See? Badgers aren't so bad after all (of course, they're no "Wolverines").

And bike rides? With no flats? You heard me right. I switched my tires to adamantium belted tires and attached a broom to the front of my bike to sweep away glass. Result? 3 rides, 0 flats (and 2 glasses of wine).

I've also taken a step up on the river by paddling the Gorge last week (Cl 3). Thanks to "Savory Em" and "Laura J" for dragging me along. It felt pretty...well...normal, which is about all I could hope for. I wasn't paddling perfectly, but I hit my rolls when I needed them, and that's what I was most worried about.

Of course, the biggest peak in the last few weeks would have to be the latest MRI (taken yesterday). At a minimum, the results looked basically the same as before - no major changes. Extreme optimism could even argue that they looked slightly better than before (though at this point I'd say hold off on the extremism - don't we have enough of that in this world already?) I also found out that there are ways for me to still travel for long periods of time if I want. Good news all around. Of course, part of the good news was that my recent blood tests looked fine - which means it's chemo week starting tonight. So if you don't hear from me in any form for awhile, you know what my excuse will be.

As for the drops these past few weeks, as I mentioned before, I'd just as soon not explain those. But this recent quote sent to me by "Rat" helps me try to keep perspective:

"Some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity...." -Gilda Radner

One of the best days...

...ever! We just had the Huck Cancer Ultimate Frisbee tournament and post-party yesterday and it was AMAZING! Everyone managed to raise an astounding amount of money to fight cancer - over $40,000! The sun dance worked incredibly well and the weather was perfect. Everyone played with the typical Spirit of the Game, and there was a broad range of skill levels from beginners to some of the best players around. The post-game party was also amazing, and brought in a lot of people who weren't able to play earlier. It also gave me a chance to chat with everyone, and once again I felt incredibly lucky to have such wonderful people in my life.

The tournament and post-game party were incredibly well run and organized. I say this with zero ego because, in fact, it was an amazing crew of friends who actually pulled this whole thing together, and I want to give them all the credit they deserve, and then some. In particular, my friends Ali and Renata spent an amazing amount of time setting up this event, and their organizational skills are truly impressive. But there were several other key helpers, and while I hope I don't miss anyone, I want to give them all (somewhat anonymous) credit. You'll know who they are.....

(And the order is relatively random)

My "Freighbor"
Froddo
Adee
Erin
Eddie
The "Kornman" Cam
Seany-B
"H-Lo"
Adrain
Casey
"Savory Em"
"K-Mac"
Apu
Kari
J-Dubya
"The Mayor"
Geoff
The "Pockster"
Zach
The "Ultimate" Joe
Lara
"Kayak Asia"
Teddy
Elizabeth
The "Sexy Librarian"
Henrik

I also want to thank all of the people who came by as volunteers to help run the tournament! Seriously, it was extremely helpful and much appreciated. Now let's keep the momentum going and spread the word for next year! Imagine if an event like this were to spread across the country...we might finally be able to truly "huck" cancer for good.

Overzealous, underwater....

Chemo Week. I started it last Thursday night with the hope of feeling better in time for the Huck Cancer Tournament. Things started out so well. I had some wonderful new tidbits from Joe about how to reduce the amount of extra meds I was taking. My first few days felt better than ever before. My appetite was pretty strong, and I had relatively good energy. I was even being careful and working from home part-time in order to maintain my rest. After the 5 days had passed, I still felt pretty good. Had I figured out the secret?

Nice try. This morning I woke up, and decided I was feeling good enough to pop out of bed and head into work for a full day. One smoothie breakfast later and I was on my way down the highway. As soon as I exited the highway, my body began to revolt. I rushed to the side of the road and...well...let's just say that smoothie tasted way better going down. I ended up heading into work, but suddenly I felt like I'd been tossed into a washing machine, rinse cycle. I pushed myself too hard.

The frustration is really hard to describe. There are certain key parts of my life that are suppressed during Chemo Week. In fact, if I didn't enjoy sleep, for the most part, it would be every key aspect of my life that is suppressed. Work is one of them. It contains part of my identity whether I want it to or not. And when I feel strained from my ability to contribute, it really hurts.

Yes, I do understand what I need to do, I'm just venting from the bottom of the ditch. I mean, really? I need 12 hours of sleep and then naps during the day? For several days? Really? Yes, really.

The "late" latest

Ooops. Sorry. I meant to update about a week ago. See, here's the thing. I start chemo. I nervously start to anticipate my decline, even though I feel perfectly fine the first few days. I feel the slide begin, and my mood shifts. Eventually, I hit bottom, and start thinking about how to describe what the bottom looks like. What it's like to always have fatigue. To gag every time I look at a pill. To not understand if I'm hungry or nauseous. To not really want to chat or e-mail or write. Anyone. Besides, my computer is waaaay up at the top, and I'm still on the bottom. So I take a serious nap. And then another. And another. Then one time, I wake up, and I feel like I have more energy than normal. My lips start quivering with excess energy whenever I talk. My mind starts racing around the inside of my head. And so I leave the house. I go for a hike, a ride, a walk. I try to meet up with all the friends I hadn't seen for the past week. I e-mail way too much. And I forget to keep everyone up to date on my blog....

Quick Update

Got the MRI yesterday, and basically nothing has changed. This time I actually felt relieved. I started the next cycle last night, so I'm trying to exercise as much as possible in the next few days before I fall asleep. That's about all I got for now. Toodle doo!

If you want to send me information....

...this is the kind of stuff I like to see! And it comes with some fun facts!


In the meantime, my next MRI is tomorrow. I'll let you know how that goes.

Game on!

The "Huck Cancer" fundraising tournament AGAINST cancer is now officially on! If you're interested in playing, watching, partying afterwards, or just supporting, check out the following website which has links to all of the necessary locations. The tournament is supporting the Lance Armstrong Foundation, cause after all, he won a sh-t load of Tours de France.....
http://www.huckcancer.org

And a huge hug to all my friends who basically organized this entire event!

Why can't I take advantage of my degree?

I've studied physics for over a decade of my life. My first college class in particular was on "Special Relativity", or the relationship between motion, mass, and time. That theory demonstrates the simple fact that the faster you move, the faster time passes around you (or in other words, you won't age while the rest of the world will). And yet, whenever I'm on chemo, I move much more slowly, yet time seems to fly past me! The evidence is in the phone calls, e-mails, text messages, and work-related requests that I have almost no time or energy to process.

It's been a pretty frustrating week, but I'm now creeping out of it. I had a great New Years weekend up in Yosemite, snowboarding (or, perhaps, snowtripping?) and hiking. Then on Saturday night I began the chemo treatment, and sometime around Wednesday my body began sinking into the molasses dripping from my brain. Today, after lots of extra naps, I'm starting to feel the beginning of normalcy. While I was spending about half my time sleeping this week, I was hopeful that the rest of the world was doing the same. Unfortunately, now I need to somehow catch up. I'm still too tired to run close to the speed of light, so I think I'm just going to have to reset my clock. And everyone else's.

On a rough note, I did check out the blog of a guy I met at my post-radiation MRI. It was pretty disheartening to read that not all of his tumor is being held at bay by the Temodar. He's pretty optimistic as he starts in on a clinical trial that I hope pounds that part of his tumor to pulp. My fingers are crossed for him and his family.