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.

Happy Birthday Joan Didion

“I'm not telling you to make the world better, because I don't think that progress is necessarily part of the package. I'm just telling you to live in it. Not just to endure it, not just to suffer it, not just to pass through it, but to live in it. To look at it. To try to get the picture. To live recklessly. To take chances."   -- Joan Didion

December 5. Round 3. Week 2.

Feeling flat. Or am I just feeling even? Who knows. I do know though that I’m here. Alive. Awake. Available. Not depressed. That was yesterday. But I changed my mind last night. That simple. I could because I knew nothing was wrong. Whatever I was feeling was correct. By correct I mean OK, appropriate, just fine. I could because there was nothing to fight against other than my willingness to recognize and agree that everything is ok. Confused? Simple things often are because we’re used to making things so incredibly complicated.

Yesterday was a blind struggle with my chemistry and emotions. The chemo drugs recreate me into another version of myself while leaving the essential part of me still here to deal with the intruder. Luckily, once the bulk of early-onset menopausal fever passed all I had to do was change my mind. To decide I was done being upset. Part of being upset was because yesterday I asked for something I wanted and it didn’t go so well. It didn’t go well, not because I asked for what I wanted--because I took a chance, but because what I said and what was heard were two completely different things. Upset because this disconnect may be a fundamental reality and it may never change. But I’m not sure I know that yet. Yesterday, I said I wanted to have more fun. What was heard though was that I’m not having enough fun. Or that the fun I’m having isn’t the right kind of fun.

What does this have to do with cancer?

Well, living through cancer and chemo is like balancing on one of those odd half ball things that have become super popular at the gym. When you’re on one, you’re in this constant state of calibration and slightly confused what reality you had to pass through to find yourself agreeing to this sort of experience. That said, with treatment what works one day, doesn’t the next. What is enjoyable now, can be uncomfortable tomorrow. Attuning oneself to the moment is the cornerstone of the ride and finding ways to have fun and experience comfort can feel like a moving target. So for me then, it’s about exploring and experimenting. How can I have more fun with what I’m already doing or maybe change it up and feel familiar things in new or different ways. What other experiences can I bring in to feel pleasure? I search not because I’m dissatisfied or that I’m not getting enough. Those judgments are empty of possibility. I search because I want to continue going deeper, getting closer. To feel more. To have fun and not endure but to actually live this experience as much as I possibly can.

Thank you Joan Didion for saying what I didn't know was on my mind. 

You're as delicious as a daffodil

Tonight's dinner. One of the all time best. Not because it was unique or because it was a special occasion. But because tonight I ate without the the cord of cancer tied around my plate. I followed my nose today and served the call of my belly. Dinner ended up being seared salmon, with an impossibly perfect crispy skin and beautiful buttery thin inner layer of fat. Sexy savory served with a pilaf of wild, jasmine, brown and sweet rice tossed with sautéed carrots, spring onions, walnuts thyme and sesame oil. And finally after a dozen or more tries throughout the season, I finally got my long bean recipe spot on. At last I figured out what was missing. It wasn't the shallots or garlic sweated with Chinese rice wine vinegar. It wasn't the chopped cilantro, meyer lemons cured in cardamom and cinnamon or the lemon juice itself. It was all there. It was szechwan peppercorns, just the tiniest bit crushed and tossed in at the end for that side-of-the-tongue tingle. Sweet beans, tangy citrus and a little twisted zip to turn it into parade. I ate that meal. I ate that meal with gusto. I tasted everything. I felt everything. I laughed out loud alone.

It's the first time since this all became incredibly, indelibly real that I ate for pleasure and aesthetics and didn't think for a second of it as a health-related transaction or feel like it was another one of the hundreds of daily conversations I have with cancer. It was the first meal where I didn't see it as part of my treatment or part of this new costume I wear called 'cancer patient.' I didn't consider the beneficial effects, the nutrients, the antioxidant properties. I ate what I wanted because I wanted it. I ate like a civilized healthy human being. With gratitude and appreciation and joy. Eating that meal was like experiencing the first daffodil of Spring. Hey you. Look how beautiful you are. How beautiful it can be.

What gratitude I have for that meal. For the fun of feeling out flavors. For the fun in having an aesthetic and delicious experience. For the reminder that I am the same person I started as and the same person I will continue to be. Thank you delicious bites. So fun you were.

No one told me

If there's one thing I can say with certainty is that I'm in body. I go in and out of favor with my attentiveness, but here at the end of Day 14, I am conscious of being in my skin, of something going on inside of me. There's a house party going down inside of me, and I am paying a sweet price as its host. Fourteen days in and I've already looked in the mirror too many times and disliked everything I saw. An appropriate response for a person who hasn't considered that she isn't the cause of the problem or hasn't considered that's it's more fun to understand what's happening. An appropriate response for someone who is just beginning to master her new reality rather than be a passive recipient.

I'm thinking back now as I was preparing for all of this, thinking about all of those questions I had about what was about to happen. I realize that it wasn't just the physical side effects I was after, but I wanted to know how I might feel as I molted into a different version of myself. Not just, "How will it feel," but "How will I feel living this experience?" What were the obvious and normal questions and observations people have when they go from their familiar, invisible self to an unfamiliar, attention-demanding being. Thinking back, what I see now as I was getting "prepared" is a series of conversations with professionals speaking in data points, each using their own empathic tone, consciously void of anything that touched on feelings. When asked about energy levels, they would say "flu-like symptoms" or "fatigued." When asked about physical appearance, they would mention temporary baldness and rashes. Asked about sexuality, they said there may be some vaginal dryness.

I realize now that no one was being direct or explicit about the impact this can have on consciousness and identity. Nor were they providing any stewardship on how to sense and perceive this changing body of mine; how to listen to and search for the new changes; and maybe most sadly, offer any sources for emotional or spiritual support.

This entry isn't about cataloguing the shortcomings of the the medical profession. It's just the realization that I've been handed an experience where I have enormous opportunity to play a role and hadn't been prepared in advance for how big or how masterful that role could become. No one explained if and how this could be fun. When I say fun, I don't mean diversionary or silly. I mean conscious. I mean meaningfully engaged. I mean engaged in a fully blown experience, neither good nor bad, but filled with endless potential. No one told me, but that's ok. I'm telling myself.

1 down, 5 to go

Chalky. I feel chalky.

It's Monday afternoon. Four days, 96 hours, since my first chemo session, and I'm feeling the edges of the Texatore, Carboplatin and Herceptin working it's way into my cells and rejiggering the marrow of my bones. There's no one thing that's screaming out. Instead I feel a dull but persistent buzz like that feeling I have when I walk through the Tenderloin at day's end--the hustle of dozens of focused covert conversations negotiating the terms of how the things are going to go down. If I listen carefully, I can just make out who's talking and what terms are being set. In this case, I can hear my cells wheeling and dealing, each hoping they'll make the cut.

Luckily, the first few days brought only small ripples of low energy and flu like aches. A little bit of wheezing and tightness on my 15-mile bike ride the first day, but yes, I did ride 15 miles. As I will today in getting to and from work. My oncologist encouraged to keep up the exercise. "Do what you do but do only 80% of it." I admit though, chemo brain has a hold on me. If I really focus I can feel the electricity firing in my brain. It's a low sizzling that makes it hard to be completely present. Doesn't hurt. Doesn't cause numbness or dumbness, but it's a queer feeling that lets me know there's something going on up there.

The texture of my body is changing. My mouth is a little drier. My hair is a bit more brittle. My skin is chalky but looks surprisingly healthy (well it did yesterday...today a small bit of Herceptin-influenced rash and acne are breaking out). I was jokingly calling it a case of "Chemo-brasion." I'm sure some anti-aging specialist will figure out how to make a cool buck on lightweight, skin enhancing chemotherapeutic treatments. As for flavors and appetite it's all changing. Are my taste buds being newly minted and cleared of their filmy layer, or am I being restored an adolescent's palette that can only pick up the basics of bitter, salty, sour and sweet?

The biggest thing I feel now is the soreness in my bones, as if I've been moving stones for days on end or sleeping on a park bench for nights in a row. It's hard to get comfortable. It's mainly in my back and thighs. Walking, biking, standing helps. It's not crippling just distracting. Chirp chirp chirp. Something's going on. At least I know this is supposed to be happening. It helps knowing this is normal, to be expected, and most importantly, temporary. Bill and I fence about the value of endurance. We usually think of it is a stop gap tactic for an otherwise unsatisfactory condition, but it's also a mechanism for putting things in perspective, temporally speaking. This may consume my now but it is not forever. Hell is not knowing if and when suffering will ever end--far worse than pain itself. I am not in Hell.

Bill and I went to the opera two days ago, two days after chemotherapy. We were driving around Hayes Valley looking for parking. I was hoping for coffee before the show. Perfect temperature. Blue skies. You know, a typical San Francisco day in October. I was sitting in the passenger seat, and just lost my breath thinking about everything that it has taken for me to be able to sit in that car two days after treatment and worry about nothing more than coffee. It's not guilt but gratitude and humility thinking about the tens of thousands of people who came before me, the history of experiments, trials, cocktails, all of the minute advances and tragic set-backs that have gotten us to a world that isn't without cancer but one that makes the burden bearable. 

In the two hours I've been writing this I've become bananas uncomfortable. Every part of me itches. I'm standing because sitting is intolerable. My bones are fighting to get out of my body. I'm calling it a day and am going home to try to find some way to get this discomfort off of me.

.....

Within seconds of pedaling my bike home the pain started to ease up. Movement seems to be key. On the way home I decided to get a cookie. Yes, I have a kid's logic that a cookie will make everything better. Total cookie monster, that's me. So what. Maybe a little kid like comfort would do me some good. I stopped at three places. Nobody had what I wanted or they were closed. But at the final stop, next door was a Thai massage center. Without a moment's hesitation, I walked in and said what the hell. If nothing else I can lay down for an hour in a calm warm place and get some hands on me.  I ended up getting a hot oil massage. Deep tissue massage just didn't feel like the way to go. Between the long, gentle strokes on my body and warm oils and towels that I was covered in, the pain lessened. I can't help but think I needed comfort as much a change in position to find relief. 

By early evening with the help of the massage, 7-mile bike ride, a high protein dinner made by my friend Susan and yes, a valium, the bone aches had started to let up. I feel blessed that I have always noticed and appreciated those sublime moments when dis-ease disappears. That moment when the absence of pain is its clearest. Such happiness I have when I don't have to endure another moment of strain. My head hit the pillow at 9:30 and for the first time since chemo, I slept through without waking. 

Chernobyl Mouth

Mucositis, mouth sores, Chernobyl Mouth...these are a few new realities that have been creeping into the sideview mirror lately. I started thinking about this corner of Candyland this week when my oncologist connected me to a woman, Cat, who is also going through chemo after having tested positive for the HER2NEU gene and having undergone breast cancer surgery. After asking her for a few tips (she's two treatments ahead of me), she spent a good bit of energy explaining the now infamously named "Chernobyl Mouth" which is the result of chemo drugs mingling and reacting with the gastro-intestinal system. The Oral Cancer Foundation provides a solid overview, preventive measures and tips on dealing with mucositis during chemotherapy. As the chemo works to destroy quickly replicating cancer cells, it's also breaking down healthy cells  and reeking havoc all over the body. In this case, the lining of the gastro-intestinal track is getting compromised all the way into the mouth, and like brush burned skin, left exposed, is ripe for infection and irritation.

The main challenges are coping with the lingering taste of chemicals and keeping the mouth clean and moist. From Cat's description, the height of this junky experience lasts about a week and lessens to normal just before the next session.

A few tiny bits of advice included staying away from acidic, spicy and extreme flavors. When sores do break out, washing with a bi-carb/salt rinse before and after meals will help keep things clean and moist. Or rinsing with hydrogen peroxide might be a good way to go. For dryness, I decided to pick some dental products that weren't highly flavored and contain Xylitol to help to keep things moist and pain free. I'll keep a few hard candies on hand as well. And finally during the treatment itself, I'm going to suck on ice chips just to anesthesize the area to help ward off the flow to my mouth. In a nutshell--I'm going to do my best to keep it clean, moist and mild....and most importantly, simple.

Like every topic related to care during chemo and radiation, the information is overwhelming, contradictory and ironically, usually fairly vague. I like the Oral Cancer Foundations pages and it was helpful to read over. In the end though, I want to take the simplest and least expensive route I can because my guess is there is no such thing as "right" on this journey. I'm not going to spin out from choices.