What are the odds?

hello world...

My name is Christina.
One year ago today I found I had breast cancer. 
Today, as far as I know, I'm cancer-free.
At least no less cancer-free than most everyone I know.

Looking back on my first entry from over a year ago, I see how the spaces have filled between who I was going in and who I've become these twelve months later. My sense of time has changed. Life is being lived more in the now with small doses of three-week cycles. Fluency has grown in the languages of "patient" and "cancer" but there are still concepts here and there that remain slippery, tricky little devils. Words like cancer-free or remission come to mind. They sound so important, something worth driving towards. But with a bit of poking, the curtain pulls back and the story gets a little more interesting.

After a year of living with this experience I now know that cancer-free isn't quite the right way to think about it. Cancer, like life, is more of a game of percentages than of absolutes. In this moment, yes, more or less, I'm cancer-free. There could be cells in there. They could be replicating. Hard to say. And with every year that passes, the chances of recurrence decrease. Will there ever be a 0% chance that I won't ever have cancer again? Likely not. Well unless, of course, we count death. But why go there? This is not that kind of conversation. Instead it's a conversation about the stories we hold onto and tell ourselves to create meaning and value. We look for guard rails, stable ground, definitions, and milestones. We do this because the reality and magnitude of impermanence and the moment may be just too much or too tenuous to handle. 

"So Garrett, when do I go into remission? And what is remission anyway? When do you tell me that I've crossed over the divide? When do I pull out the balloons?" Translation: When is this moment done and I get to check the I am now safe box?

"Actually, you've been in remission basically since about the time we met last year, and we started you on chemo. Remission is really just three months, more or less, past the point when we no longer have any visible signs of cancer. All the chemo and radiation--we consider that all to be preventative measures. Two years after we finish the Herceptin treatments we consider your chances of a return to be at 3%. As the years progress they lower to about 1.75%. If we were to stick you on a bus full of people today, statistically speaking, you are the least likely person on that bus to have cancer." Translation: No check boxes. No absolutes. What matters is now.

Don't get me wrong, I believe a future exists. And I believe there are ways to influence the percentages going in my favor. But instead of focusing on getting to a 100%, to a goal, to a state change, or even an identity, my interest and attention is shifting to what is now. It is infinitely more gratifying and fascinating and a hell of a lot less work.

Living in a culture where goal-setting and making it to the next level saturates every view and conversation, being in the moment without focusing on future implications is no easy thing. I'm drinking the kool-aid but don't think for a second transcendence has arrived. But I get taste of it and it's beautiful. The cancer ride is showing me that milestones and goals, however important and real they may seem are also myths, the stories we tell, to define ourselves and create a ground that feels more comfortable and knowable than floating in the moment.

Good stuff this is. 

So what next?

I realized when I was finishing up radiation a few weeks back that I wasn't sure what came next. In the immediate moment I understand. I know that my Herceptin treatments continue every three weeks until October. But then what? And as importantly, what am I supposed to be doing along the way? What should I be thinking about, preparing for, noticing? What appointments have to get in the queue? I thought about this because I kind of remember that my surgeon said something back in October about a follow up six months after surgery. But six months came and went, and no one called.  No one reminded me that I was supposed to do this. I just kind of remembered, "Shouldn't I be doing a follow up about now?"

On my last day with radiation, I met with my radiologist and asked if I was supposed to come back. Actually what I asked was, "Respectfully, who's in charge here--of my treatment, I mean? Who's my go-to person?" He laughed. I think he's gotten that sort of question before. I can't really remember what he said now but I do remember his candor in admitting it's an unclear path with no single point person. Then he added that I was free to call anytime if I had any questions at all. Thanks doc. You've been great.

All of these stops and turns. It's like the opposite of a dead end. I keep hitting more open roads with just enough signage to realize I'm not sure where I am. It's sinking in that there is no guide. No map. No cruise director. No concierge services. Just a series of hand-offs where I track the path as it's rolled out in front of me. Ok, go down this road. When you get there, tell them who you are. They're expecting you. Just remember to come back and see us next year. And feel free to call anytime if you have any questions at all. Thanks guys. You've been great.

 I don't know where I got the idea that there'd be someone within this medical food chain to oversee my progress or more importantly, oversee me, my experience. But it doesn't work that way. Each doctor, nurse, technician cares. They care about me in the moment, my comfort, my state of mind, my symptoms. But each has their own mandate and agenda. They hold onto me as long as it takes to document me, follow up and pass me off. But there is no one source that says, Christina, you are here. This is what you should be thinking about and watching for as you go down this road. These are the tolls you will need to pay along the way. These are the people you can expect to meet. Here's my number and this is when and why you should call. 

I'm not speaking from a place of pity or entitlement. I'm not angry. I don't expect too much. But it strikes me as broken and even dangerous to expect that a person who is living under extreme stress and intoxicated (to one degree or another) with the effects of cancer treatments could successfully manage the complexity of long term care. I write the information down. I get the schedules on the calendar, but I'll be damned if I can remember why.

Give a girl hand will you? I could do with a little more push than pull. Push that schedule on me. Don't make me pull it out of the conversation. Don't let me forget to show up. Push that support my way. Don't make me hunt down a flier on the wall of the hospital basement. Make sure I've heard all of the opportunities. Push long term preventative options on me. Make sure I'm good to go for at least a year in advance.

I feel like I made it through a brutal ocean storm riding in a tiny little raft. There's a sublime calm I'm experiencing now, but I'm still a little bit adrift. The sense of dis-ease is still here. Not only is there no one to really guide me but there's no one to offer up the possibility of an end.  The best that I can expect is a series of diminishing returns--follow ups will halve indefinitely until my potential outlives me once and for all.

I thought as I crawled out of the hard part of treatment that my faculties would bounce back faster and that I would feel it all receding. But the reality is that I'm still deep inside of it and I'm still confused. Maybe it's post-traumatic stress or the drugs or that I don't like being out of control. But I'm scared I'm missing opportunities; forgetting information; or supposed to be doing something in particular.

Where's my personal assistant? Who said she could have the year off?

Big breath Christina. You're doing great.

Post Treatment Disability

I'm a member of BAYS, which is a Bay Area organization focused on providing support and resources for women undergoing cancer treatment. Recently, a thread was started around receiving post-treatment disability. Most us don't realize the prolonged effects that treatment can have on our systems and our lifestyles. Here's what one Legal-Aid lawyer told us about benefits:

"...In general, you can go on leave after treatment as long as your health care provider certifies that you need the leave due to your disability (e.g. to recover from the effects of treatment). There are different eligibility requirements for different kinds of leave/programs -- wage replacement (State Disability Insurance or private disability insurance) vs. job-protected leave from your employer (family/medical leave or leave as a reasonable accommodation) . As long as you're eligible, you should be able to receive both wage replacement and job protection during a medical leave after treatment."

Sleuthing a little further, I found out the Gov. Brown passed into a law a bill to allow workers to receive paid family leave benefits while caring for seriously ill grandparents, grandchildren, siblings, children and in-laws. The law will provide up to six weeks of partial wage replacement benefits per year. The law goes into effect July 2014. This falls on the heels of California's Paid Family Leave Law (PFL), which is the country's first law to provide partial pay to caregivers as they take time off to tend to ill family members or to bond with new children. 

Want to learn more? Here are a few links:
Fact Sheet for SB 770
SF Gate article on expanding leave 

The return of ice elevators

"They’re closing down on us. They’re closing down on us."

Bill rolled over this morning. What had I been dreaming about. Did I want to talk about it. I'd been calling out over and over last night.  I could remember that there was a dream. That I had dreamed. That dreams have returned to me. Layers and layers of iridescent, saturated moments, vague conversations, fractured and re-assembled memories floating through my nights again. I love to dream. I'm a lucid dreamer, exploring, retracing and re-jiggering a half dozen realities night after night, decade after decade. A favorite is to travel through interlaced ecosystems, by kayak or canoe, roller coaster, bicycle and ice elevator. I travel up and over rolling hillsides to an upper level ancient fortress city that doubles as its own museum, with floors made of dirt, marble, wood or snow, jumping over low walls and shoulder-less roads that drop me into a childhood backyard smelling faintly of the arid upper foothills of Los Angeles... I love that dream puzzle. Moving fluidly through these dreams is like being a kid and knowing the long, sneaky back-way home.

I'm dreaming again. This is what's important. Little bits of me are resurfacing. For the past five months I hadn't noticed that when I slept, that was that. Nothing more. 1 x 1 = 1. But now five weeks since the end of Carboplatin and Taxotere infusions, quiet layers of my past self are returning.

I smell different too. More like myself, what I used to be -- a little ripe, a little gamey. There'd always been a musky scent to me and now it's creeping back, replacing the mild, hangover-like stink that had been brought on by chemo-induced liver and kidney poisoning. My insides are filling with more of my own chemistry than what the pharmaceuticals decided I should be. The chemical alterations which have masked, numbed, distilled, and upset the ways I emit, emote, sense and perceive have been purged for the most part. I like the lightness of what remains or maybe, what has been returned. I like my human-ness. I never thought I'd love seeing my skin break out or delight in the scent of my clammy sweat. But it's all me. My insides finally free to do what they do best. What a sweet moment it is.

Get-out-of-jail-free. Go eat cake.

This morning I walked into my sixth and final chemotherapy treatment gearing up for that last delicious and deadly cocktail of Taxotere, Carboplatin and Herceptin. My small world of people have been sending me cyber hugs and friendly emoticons in anticipation of this day being the end. Texts, emails, phone calls and in-person conversations saying "Congratulations you're done!" or "Congratulations, Wednesday is the last day!" And as friendly and supportive as it has all been, it's been incredibly hard and even alienating to accept these notes. Because the real end on this cycle is not today's visit but following the three weeks of side effects that come barreling on its heels. I feel ungrateful and caught in an unnecessary trap of denial for not focusing on the love people are showering on me now. Who cares if the end is today or three weeks from now. The end of chemo is definitively close at hand. I struggle to put my attention on their good intentions even if the facts are incorrect. But even if I do that I still know and feel that February 20, twenty one days from today, is when I plan to pick up my peloton.

Chemotherapy creates rituals.

Last night and hours before today's treatment I prepared by taking my steroids and antihistamines to help smooth the intake of Taxotere. My body was being geared up as the host. The ritual adrenaline started to secrete. This morning, even knowing what was to be expected and even accepting it all, my movements and attitude changed. More clipped, tighter, less at ease. I packed my water bottle and small bites. I grabbed my detox tea bags and magazines that I would never read. My phone was charged. Comfortable loose layers and finished it all out with a nice little bit of pecking at Bill. Oh rituals, how I love thee.

We got to the office. First ones there this time. With these five hour sessions it was nice to think we'd be out before dark. In this last go around I came to realize how little I understood what was going on backstage, medically speaking. What was being monitored? Is everything as expected? How do we know the chemo is working? I'd been moving through these months discovering and responding on the fly to each unique side effect. I surprised myself how little I'd been checking in on my over-all medical progress. So for 25 minutes Bill and I talked with Garrett about the new pulsing eye syndrome, my weight gain hypothesis (aha! I simply had been eating a lot. Who would've guessed?!) and the continued achey bone issues but then turned the conversation to blood cell counts, cure rates and the role of Herceptin. All to find out that there's no way to know if things are working. We can only monitor side effects not the efficacy of treatment. It's really just a waiting game and numbers racket. But this far in, my innards are holding their own. It looks like I'll get to that finish line without anemia, bone loss and hopefully anything irreparable.

And then off we went to the reclining lounge chairs with their panoramic view of a misty San Francisco Bay. Nestled in with blankets and pillows. Bill prepared my tea as I lean back.

Ready. Set. Go.

Garrett wheels in the first of four bags--a cocktail of analgesics to minimize the side effects.
"Well it looks like a short day for you today." says Garrett. Confused, Bill and I look at each other.
"What are you talking about? Why is this a short day?" I say.
"Oh we said we were going to do 5 treatments instead of 6. We're just doing Herceptin from now on. We decided last time I thought."

Laser beam to brain. Stunned. Silent. I stare at Garrett then at Bill trying to understand the gobbly gook coming out of Garrett's mouth. No more chemo? I just got a fucking get-out-of-jail-free card!? It's over. It's really over. This step, and hopefully the biggest one of this ride, is over. This moment, whatever I feel like or even smell like for that matter, this is the worst of it right now because the truly worst of it is in the rearview mirror. My head will grow hair. My fingers will feel again. My physique will lump less. My muscles will strengthen. Hopefully my joints will stop aching.  No more chemo brain. No more bloody noses. No more insane GI tract nonsense. No more nausea. Shit no more teenage skin though, but hey it was nice while it lasted.

Chemotherapy. Is. Officially. Over.

I won't lie. There are a pile of entries before this that explain how hard this is. But in this second and the seconds since Garrett said, "Oh sorry I thought we had agreed that it would be five treatments instead of six." that I have been on a fluffy cloud drifting down to earth. In this moment, I don't care what comes next. I'll save that for later. I know this process is not over. I have not been cured. There is more in front of me than there is behind me but for some reason the hardest feels like it has passed. It may not be true. But in this moment I don't care.

I think I'll eat cake.

Happy birthday to me

It's my birthday, and I am grateful.
I am grateful for the four chocolate chip cookies that were in a brown paper bag waiting at the top of my stairs tonight when I got home. They were from Leo and Hector next door.
I am grateful for how four chocolate chip cookies are the perfect birthday dessert.
I am grateful I rode my bicycle the 13.2 miles to and from work and felt the strength of my legs and a heart that didn't heave going up little hills.
I am grateful that 83 people had me in their thoughts and wished me a happy birthday.
I am grateful to hear Leslie's voice.
I am grateful for lunch with Faith and Susan.
I am grateful for the boiled egg that came on my lunch plate.
I am grateful for its most beautiful shade of yellow.
I am grateful for this happy birthday song from one of my favorite families: Anya, Ruby, Marijke and Reid.

I am grateful Marijke is coming to visit me next week.
I am grateful I have friends and am loved and in their thoughts.
I am grateful Patti sent me an email.
I am grateful I talked to my mom and my brother.
I am grateful I am in a good mood and have no interest in a bad one.
I am grateful that I can change my mind even though I didn't want to or need to today.
I am grateful I canceled my dinner reservation and came home to delicious leftovers.
I am grateful Bill stepped forward.
I am grateful Bill asked me to go to Muir Woods with him on Saturday.
I am grateful to think about the future even though I'm only thinking about right now.
I am grateful for being open to fun and having it delivered to me all day long.
I am grateful for this day.