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.

Fluxus Maximus

45 days since I've been here last. Six and half weeks that's felt like three life times filled with blind corners and slippery surfaces. It's all happening too fast for me, a person who likes to set her boundaries firmly, deeply and clearly defined. It's also happening too slow for me, a person who knows what needs to be done and feeds on productivity and taming chaos. 

But those 45 days have past and here I am today fresh from my fertility clinic visit this morning trying to see about my options. Because if having cancer isn't enough, having it at a certain age means addressing the issue of early onset menopause. Chemo, you see, kills not only the replicating HER2NEU cells that want to devour my body, but tends to kill any healthy dividing cells that are happily going about their business--from my reproductive system all the way up to those itty bitty strands of hair perched atop my head.

Cancer is an accelerant. It is a substance that can bond, mix or disturb anything it touches and cause an increase in the speed of a natural or chemical process. It accelerates decisions, relationships, values, emotions...it accelerates everything it touches. 

For weeks now, I've been trying to grab a hold of anything that looks familiar, not fighting change but trying to apply standard patterns to keep familiarity close at hand. I've been trying to control anything within my grasp, be at the helm to regulate the speed and direction of the current. "No, I've got it." "I'll do it." "I'll take care of it." "It has to be done now." And so on and so on and so on. 

But the fever's broken. I'm sitting here now stunned at how much I couldn't see. My view has changed and the metaphor has gone from steering through the chaos to floating with the current. You don't float by holding on but by letting go, by feeling and responding to the water's minute gestures. It's no longer about fixing things but rolling with the flux -- constantly flowing, continuously changing, unbounded experience. No beginning. No end. When I'm awake I know this. When I'm half conscious, it's incredibly hard to remember let alone embrace. I'm not exactly sure how I got back but I think through pure exhaustion reality was given a little room to shake me awake. Oh and also, the man I love, Bill, the one who means the most to me, reached his limit in the unsolicited role of bridled whipping boy. Bless his tall white boy sense of privilege to think he could mandate how I should start behaving, barking out how it's going to be from here on out. My annoyance turned into rage. Plates went flying and with that, the last bit of fighting in me went out the window...or into the window if we want to get the facts exactly straight. Thank you, my love, for demanding that it's time for me to wake up.

I know who I am. I know that I'm much more at ease if I have some edges to what's lurking in the distance. And I'm much more comfortable if there's enough order and clean surfaces that I can get done what I want, when I want. That's not going to change. But the true reality is that what I know and what is in place is good enough. There's time. Enough has been done. No one's dying here. Well, at least not me and not quite yet. Suddenly magically, look how simple it all has become. Stay awake. Pay attention. Participate. And even with cancer, I can have a little bit of fun. Maybe even a lot.

Big breath again....

So where are we for those who are just catching up?

30 days ago I had an out-patient lumpectomy where a 1.5 cm ductal carcinoma was removed from my left breast and a biopsy was done on a sentinel lymph node to see if the cancer had migrated to the lymphatic system. It had not. But what is known about cancer is that it is relentless and pitiless. Treating it locally through removal of what can detected is not enough. Cancer must be treated systemically, which means, even though it may appear I have a clean bill of health, it shouldn't be assumed this is the truth, especially with HER2NEU lurking in the wings. So where am I then? I'm in the holding pen with my release papers in hand. But first there are a few gauntlets that need to be run. Four more steps in total. The first three completed over the course of a year with the final step running over another 3-5 years. 

Today, October 14, 2013 I am assigned Stage 1, Grade 2 ductal carcinoma. Post surgery now, I will follow a standard course. 
Step 1: Slash and Burn (Beginning 72 hours from today). Six rounds of TCH chemotherapy treatment (Taxotere, Carboplatin, Herceptin). Every three weeks until late January 2014. Fatigue, mouth sores, baldness, brittle bones. A new normal.
Step 2: The Easy Bake Oven
4-6 weeks of daily radiation administered locally to the left breast. Using an awesome bit of technology, the ray is sent on the exhales to avoid radiating my heart. Like a tanning salon but even better.
Step 3: A year of IVs 
Herceptin treatments every three weeks for the remainder of a year to keep the HER2NEU gene in its rightful place. Totally do-able.
Step 4: Hormone Therapy
3-5 years of daily meds which hopefully will not result in obesity, depression, personality change and/or hot flashes. But we'll leave those concerns for another day.

more to follow indeed....

Cancer? Really?

hello world...

My name is Christina.
I have breast cancer. I found out 14 days ago.
Today, as far as I know, I'm not dying. At least, no more than anyone else I know.
What I do know is that I have 1.5 centimeters of poorly differentiated infiltrating ductal carcinoma in my left breast. It's the official way of saying that at least one milk-carrying duct is swimming with cancer cells and some of those cells have crossed over the cell wall and are starting to migrate.

So here I am with cancer and now, suddenly, everything looks, feels, smells, and sounds completely different. Like traveling to the other side of the world, I know this new world is connected to the one I just left. And even though I recognize the pieces, the script has changed entirely. I'm now member of a club I have no interest in being a part of. And for the moment I barely speak any of its languages. I don't speak "cancer." I don't speak "survivor." I don't speak "patient." and maybe worst of all, I don't speak "take it easy and cut yourself a break." Thankfully I do speak a tiny bit of "showing my hand" -- enough to get by, to let the people I really need in, but it's noticeable, even to me, what a struggle it can feel like. I also speak a bit of "Thanks, yes, I'd like some help." And thankfully, years ago I became bilingual in "How does that work, exactly?" and "In the right circumstances, anything can be funny." I guess, all in all, it's a decent start.

So how did I get here?
90 days ago my mother told me she has breast cancer.
84 days ago I found out my ex-roommate has breast cancer.
80 days ago I made an appointment to have a mammogram.
63 days ago I went for the mammogram and was told that something looked irregular.
58 days ago I went in for an ultrasound, so they could get a better look. They said they couldn't tell and that a core biopsy was necessary.
....then there was 37 days of run-around getting referrals, treading water, waiting, just to be sent back to the place I started.
21 days ago I had a core biopsy. For the record, core biopsies don't hurt. They just sound like they should. I would say though, like most healthcare related experiences, they're unnerving, uncomfortable, intrusive, and slightly humiliating. Thankfully, they regularly come with professionals who recognize this inhumanity and do their damn-dest to take the edge off with information and gentility. My gut is saying that these are facts that I'm going to be living with for at least the next 4-8 months.

In the 14 days since finding out, there have been consultations to endure; phone calls to make; paperwork to sign; policies to read; appointments to set up; machines to lay in; fluids to absorb; gowns to wear; and rooms to wait in. And lots and lots of withholding. Withholding from friends, which feels just as bad as lying because, well, it is lying. Withholding because I don't have the edges yet. Until my lumpectomy (which follows the MRI I just got), there are no answers about what, how long, how bad, what I need, and so on and so on. Withholding because I honestly hate puppy dog eyes even if they are grounded in good intentions. Withholding because it's none of your business and I don't really have the energy to make you feel better even though you think your trying to make me feel better. Withholding because I'm not sure you can keep a secret. Withholding because my stomach flips and the oxygen gets thinner every time the words "I have cancer" start to form in my mouth. Withholding because I'm just really really scared most every day and sometimes I just don't want to think about it, to accept this is really. fucking. happening.


Take a breath


Take another


New thought.


I don't know what my plans are here, writing these characters into barely readable sentences. But it feels good and helpful and constructive to lay it down in some sort of regular manner and maybe coming here each day, I'll start to see the building blocks of all these new languages I'm slowly starting to learn.

The blog too, maybe, is some way to get away from my fears and rambling thoughts and get myself up to 10,000 feet and make some use of this experience. If the healthcare system is awkward and uncomfortable and confusing what can I do here to help out a little bit--something I can offer that might make this easier, less stressful, more understandable, graceful, or transparent for someone else going through this too. I'm thinking about this angle because I'm a designer. It's my habit, my training to plan and unpack how things work, so tomorrow has the potential to be a better version of today. I think if I can find a way or many many ways to make this experience into an opportunity, then this bullshit lottery card that I've been awarded is actually a gift and that cancer, even if it eats me alive, doesn't get to take my soul down with it. But for today, I'm not dying. At least no more than anyone else I know.

Let's see where the ride takes us. Everything is possible.