Ohm

I’ve long been one to defend the rights of all cancer patients (and everyone, for that matter) to self-identify with whatever language makes sense for them. I certainly won’t judge those who identify as victim or survivor. But I know many, many patients – especially metastatic patients – who loathe the war analogies. Yet I haven’t been able to reject them out of hand. I think, in part, because sometimes this disease does feel like a battle and that I’m fighting for my life and in part because it has become so engrained in our collective psyche that we don’t really have much to replace it with.

But during last night’s restorative yoga class, which I really wanted to skip out on, things started to make sense. Unfortunately it meant my mind was racing throughout the class, but if that leads to clarity, so be it.

I don’t know how cancer came into the studio with me, perhaps the news of a friend starting hospice and another prepared to die. In death language becomes even more important. We risk blaming the patient for not fighting hard enough or losing the battle. I know what I don’t want said about me, but I’m not sure what I do want said.

So in that yoga class…the room is dimly lit, my eyes are closed and hands open, I breathe. Breathing is good… The instructor tells us to surrender our bodies to the earth, allow gravity to pull us down and hold our weight.

Surrender….

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The Wig

wigtowne.com

I haven’t been out and about as much as I’d like lately. Taxotere is taking its toll, and fatigue is reaching further and further into my life. What was originally a few days of being tired is now a week or more, leaving a week or so of time when I’m feeling good before the next cycle begins. I’ll take the days I have with gratitude, believe me, but it leaves little time for socializing. Most of my “good” week is spent running errands, catching up on my advocacy work, and getting some good writing time in.

But this was a good week – and I got out more than usual. I had a CBCRP meeting in Oakland and the bar mitzvah of a family friend.

For occasions like these, I spend more time than I should thinking about my head. It’s nearly bald – shaved close but not off – and I’ve been spared total baldness in favor of “fuzz.” The irony is that I gave up my long, curly fuzz for the short fuzz of a buzz cut.

There are practical matters to consider. Walking around bald doesn’t bother me, but it can be awfully cold! Scarves help, and it’s what I wear most days. But TSA can make me remove a scarf, and that’s a hassle. Plus there’s the shocked stares of pity by those around me, which I really can’t stand. So I decided to wear my wig to the conference. It got me through TSA in both directions, though it itches quite a bit and I worry about it moving around. To me it looks so obviously like a wig, but only a few in the know agree. I’ve had a number of compliments about my new ‘do, so I guess I’m fooling most of the people some of the time.

Fast forward to the bar mitzvah. It was the first time I’ve been in synagogue in a number of months, and while many friends know that I’m back in chemo, it’s not – of course – part of their daily awareness. The experience is very different – close friends do a triple take before they realize it’s me. I know my curls were my signature feature. I could have gone with a curly wig, and that might have made things easier. But I wanted something a bit different. Nothing drastic – I’m not the type to go green or blue, let alone pink, but something that could make an otherwise miserable experience fun was in order.

So I’m never quite sure how to approach someone. Do I start with an introduction, which seems awkward, but not as strange as the “who the hell are you?” look I sometimes get. Or do I let them go from confusion to concern to shock to recognition? I try to stay with John, to provide a context and make things easier…but even that doesn’t work. I’ll never forget the time, back in 2002, when a very dear friend was upset with John for bringing another woman to synagogue while his wife was sick at home – until she figured out that it was a wigged me.

It’s been an interesting social experiment, and one that I hope isn’t making others too uncomfortable. I’m no less sure what to do than I was 14 years ago, but I’m still here asking the questions!

The Tax Man Cometh: California Breast Cancer Research Program

 

Yet another in the alphabet soup of breast cancer organizations, right? Wrong!

There are countless organizations – and even more letters – in the world of breast cancer. A few stand out, and this is one of them! The CBCRP is much like the DOD’s CDMRP (aka “the DOD”), for those familiar with THAT effort. It is a California state research program that seeks to fund breast cancer research that is, in many ways, unique to California. With our unique perspective, diverse environments and ethnic diversity, we can do things other states can’t. CBCRP has two foci – investigator-driven research and program-initiatives objectives. CBCRP funds high-risk, high-reward research throughout the state.

I am honored to serve on the committee that helps administer the program, and I have a front row to the unique research we fund. CBCRP priorities include a focus on addressing primary prevention, understanding breast biology, and improving detection, treatment, survival and outcomes. There is a particular interest in the role of and unequal burden from environmental exposures, as well. Additional, CBCRP places a premium on the involvement of advocates in research, and reserves funds for community-initiated proposals.

It is the largest state-funded initiate of its kind!

Another Day – Another Blessing

faithpondering.com

I suspect that there are times when I utterly annoy those around me with optimism. Not that I don’t have my moments when I simply fall apart, as most of us do, but I am a perpetual “glass half full” sorta person. It helps me feel better when I can see the silver lining, focus on the up side of whatever I am experiencing. Today I had an incredible opportunity to help educate about metastatic breast cancer and meet some amazing fellow travelers. We attended a focus group looking at the side effects of MBC medications. And we put it ALL on the table (except as I now think about it, weight gain! oops) – fatigue and poor sleep, hair loss and loss of sex drive, perpetual hot flashes and more.

What I found most interesting is our immediate bond. In the 10 minutes we sat together in the waiting room, it was already clear that the facilitator was going to have a bit of a challenge in keeping us focused. There was so much to share, so much to commiserate about, and so much to celebrate. Without exception we each found a new spirit in our lives after our MBC diagnoses, and I think it’s fair to say we each preferred the paths and attitudes we’ve adopted since our diagnoses. We all seem to be living more fully on whatever time we have!

So with gratitude for my new friends, and those who brought us together, I’m signing off on yet another great day!

395 Sq. Ft.

This one goes out to AnneMarie…

I lost my mind in 395 sq ft.

I checked under both beds, as my mom taught me to do before checking out of every hotel room of my childhood.

I pulled back the shower curtain, found my conditioner and comb, but no mind.

And for the next fifteen minutes I wandered around the room aimlessly in search of something. That’s how chemobrain works on the ground, at least for me. Yes – really – 15 minutes.

I’d spent the weekend at the Young Survival Coalition Annual Summit. Five years ago this was the first breast cancer advocacy conference I ever attended, and the first step on an incredible journey of advocacy. This year I got to attend on behalf of METAvivor, but also someone who has been where these young women are – charged and passionate and frustrated and angry and confused and, and, and….

I admittedly overdid it. But from early morning coffee, to late night dialogue, I had the incredible chance to listen to these women. I got to hear about their personal fears of recovering from treatment, the delicate balance of worrying about metastasis, the state of research (or lack thereof), and their frustrations about not being heard, acknowledged, of not belonging to the club they never wanted to join. I would not have given up a minute of these conversations.

And so it was that, when it was time to pack up, I lost my mind. Now packing up is simple, right? Everything that’s mine in the room is going into the suitcase. There aren’t decisions to be made. It’s all going home. And yet I couldn’t do it. On the other end of the task was making my way to the exhibit room to pack up the METAvivor table, ship the sign to Annapolis, collect all my person things, pack up the sign-up lists, and, and, and….

So at 9 AM on “fall back” morning, pissed over the lost hour of sleep after a too-late night, I called the front desk. They graciously gave me my hour back, extending my checkout until 1 PM. I opened every door in the room, and left.

There was a security camera right outside the door of my room. I couldn’t help but laugh to think that a security guard somewhere in the hotel had spent the weekend watching me go back and forth again and again to collect things I had forgotten or to leave things I decided I didn’t need. I think I pushed the “down” button on the elevator half a dozen times, and then ran back to the room, only to miss my ride to the conference floor. I was my own very own three-ring circus.

I found the coffee station and filled up, got the table supplies packed up and down to the business center to ship off, and returned to my room an hour later, a little calmer. Or more confident. Or less cluttered. Oh hell, I made it back to the room…

All the doors were open – bathroom, closet, drawers. That’s my anti-chemobrain strategy: close the doors as I clear out a space, and hopefully everything finds its way to the suitcase.

Bathroom? Check.

Drawers? Check.

Pull back the bedcovers? Check.

Clothes from the closet? Check. I close the door, only to be stopped by my dark brown shoes that I just happened to spy with my little eye. Check.

Scientific poster for the next conference? No where…NO WHERE.

With 10 minutes left before the exhibit center locks up, I dash out the door and all but bump into a housekeeper as I dash for the elevator, then run back just before the door closes to grab a room key, miss my elevator, and wait for another.

It’s nowhere. Moments from panic, I sit for the first time since my feet hit the floor when the alarm went off too early. Think, I tell myself. And as I look down to bury my head in my hands, the green fluorescent tube peeks out from the curtain behind me. My poster! Behind me? Seriously – I thought that was a good idea?

Back up in the room, everything finally in its place, suitcase zipped, backpack loaded, poster secure, I wonder how many other women in other rooms are playing out this same scenario.

It’s the Friday of Memorial Day. Do You Know Where Your Tumor Block Is?

Remember me? I never call, I never write…and I do apologize. It’s been a bit crazy here on so many levels. The good news is I am feeling well, there’s no significant cancer news so I’m jumping right back into the fray because, well, I have to…but know that I’ve missed you!

 

I’m coming up on a 12-year cancerversary of sorts – my bilateral mastectomy was the first week of July 2002. Early enough in the month that the residents would be fresh and eager and before they had learned to sleep on their feet during rounds. Round about July 7, but I would have to dig out papers to confirm that. It’s good when some details float away…. In fact, don’t normally acknowledge this particular moment in my cancer biography, but it has been brought into the spotlight thanks to my desire to have my tumor sequenced. The back-story goes like this:

I’m not yet convinced that my third-line therapy, everolimus and exemestane (aka Afinitor and Aromasin) are working. If they are, they’re taking a lot longer than I would like, but that’s another story….

This story is about if/when I have to move on to the next treatment (yeah, that “if” is there to protect my sanity for the moment), I’d like the direction that genomic sequencing can provide. Do I have mutations in the PIK3 signaling pathway? What about the CDK4/6 pathway? Or any one of the myriad of DNA corruptions that could guide us as we enter the world of personalized medicine.

When Faith Falters

For as long as I can remember my primary identity has been grounded in Jewish community. From summer camp to youth group, that is where I first felt I belonged. So much so that I went on to minor in Judaic Studies in college and focus on Jewish Communal Service in graduate school. Most of my 25-year career has been spent serving the Jewish people, and I have always felt lucky for the chance.

While Jewish peoplehood and Jewish faith are not the same things, I’ve generally taken my faith for granted. I work in a synagogue, after all.

When I was first diagnosed with early-stage breast cancer I felt the warm embrace of both the Jewish people and the Jewish faith. My community could not have possibly been more supportive and I never bothered to think through the distinctions. My connection to them was synonymous with my connection to God. I was grateful for the many prayer groups across the county who held me close, to the strangers who would never know more than my name, but petitioned God on my behalf anyway. And our faith seemingly prevailed. Despite the unpleasantness of chemo and a long, long surgical recovery, I was “cured” and able to leave breast cancer behind me, stronger for the experience.

Today, as a metastatic patient from whom mortality cannot be hidden, I’m less sure. My faith’s teachings are admittedly vague on the subject on afterlife, favoring a focus on what we can and must do in this life over speculation about the next one. We have this time, it seems to say – make the most of it. Enjoy it, but do good things, too. Not because you’ll get credit for it later, but because it’s the right way to be. So after all these years of serving the Jewish community, of trying to do good things, what’s left? I understand I may not die of breast cancer, but I will unquestionably die with it. And as each treatment fails me, my faith is a bit more compromised.

Are God and heaven and hell just human constructs designed to make us feel better, safer, about the mystery that is dying? Are they real in the absence of evidence, in the same way that we can’t see or capture the wind? Or perhaps they exist only for those who have faith. I don’t believe my faith will heal me, as much as I wish it could. Wonderful, saintly people have died of illness, and evil people have lived long and prospered. It’s impossible for me to believe in an interventionist God in a world like that.

Ultimately I believe, with rare exceptions that range from Hitler to the Dalai Lama (yeah, don’t see those two in the same category very often, do you?), that we mostly try to be good, and we succeed and we fail and we go on. I have friends, mostly Christian, who urge me to have faith. I understand why – from their perspective faith is the key to heaven. From mine, if there is one, it is good deeds. And I guess I believe that actions do speak louder than words…

But it begs the question of faith. As the lives of some many fellow bloggers and twitter friends are prematurely stolen from us, as my own health falters, do I have faith?

I remember when my mother in law was diagnosed with mesothelioma. In the months before she died we would have long conversations of faith. She had, once, believed in life after death, and had a notion of it being good. As her death approached however, just when she probably needed it most, her faith was gone, or at least well masked. She came to believe in nothing. I’ve always hoped in her final days, when she no longer had the strength to talk on the phone, that she found what she needed.

Which has me wondering what I need. Would this path be easier if I were a true, unquestioning believer? Would I find comfort in “knowing” what to expect after I die? Perhaps, if I could ever really move from thinking to knowing, a move the skeptic in me is likely to never make. In the end, it always takes me back to the very beginning. Within hours of being diagnosed the first time my anger at what this would mean for my loved ones burst forth. Never mind me, I’ve done bad things in my life. We all have. But to make my loved ones suffer for my actions, the unanswerable question always remained: what could Zach, at the tender age of three, have done to deserve this. That, in the end, confounds my faith; I have not found a way to put my trust in an unjust God.

I figure I have lots of time yet to work this one out…

Third Line Therapy

Memories of another angst-filled day of sitting in bed waiting for the side effects of my first round of chemo playing tug-of-war with what I know must happen, I ask John to bring me my pills.

“The new ones?” he asks.

“I guess,” I grudgingly respond. Really, this is me? Really?

OUTRAGE!

In 2012 METAvivor launched it’s “Elephant in the Pink Room” campaign to highlight that despite pervasive awareness of breast cancer thanks to both legitimate awareness campaigns and “Pinktober” marketing, what we still try to ignore is the reality of getting, living with and dying from metastatic breast cancer.

This morning I discovered that the campaign was essentially stolen by Kohl’s Department Stores to “fundraise” for Susan G. Komen and I am truly outraged! (Find the Kohl’s Cares campaign here.) First and foremost, it is disgusting that Kohl’s would impinge on a small non-profit organization’s pre-existing campaign in such a blatant and unethical manner, and do so to sell more products (like their “pink elephant” necklace) and direct “charitable” dollars to another, behemoth of an organization.

TRANGST

We’re familiar already with the term SCANXIETY – the persistent anxiety that surrounds PET, CT, Bone, MRI and whatever other scans they can throw at us. It pertains to the test itself, and to the wait — the hours or days it takes to get our results. But as I await the shipment of my new meds from the speciality pharmacy, I think we need coin a new phrase, TRANGST, perhaps? The angst that surrounds the change to any new treatment protocol, with it’s unknown side effect and unknown impact.

And that is where I sit today…