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