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!