The Coping Dance: Cancer and Mental Health

It’s been months since I could do this. Write. Aside from tweeting and the occasional Facebook post or text, I could not work up the mental stamina to write more than a few paragraphs which I reserved for personal emails.  It bothered me, but I blamed it on the chemo and convinced myself that I really had nothing of interest to say. Then I noticed there were other things I couldn’t do such as planning social events with friends and family, or having an honest laugh, or feeling joy when hearing someone else’s good news. These were things that gradually floated out of my reach until I couldn’t figure out a way to get them back.  On the outside, I suspect I appeared to be in solid Coping Mode: doing the dance.  But somewhere on the scary inside, I suddenly felt as if all my relationships, my passions, my reasons for living, were in danger of becoming permanently obscured by the relentless demands of this disease.

Since 2006 I have been treated for breast cancer in three of the top cancer centers in the country:  Memorial Sloan Kettering, Yale’s Smilow Cancer Center, and MD Anderson.  I also spent years being treated at Greenwich Hospital when I believed I had “survived” my first diagnosis of Stage 2B breast cancer. Throughout these eight years, having been seen by hundreds of health care professionals through countless rounds of chemotherapy, ten surgeries, and no less than nine trillion doctor appointments, I was asked once, and only once, about severe stress or unusual depression.  After I replied yes to both (which happened to be during a chemo infusion), a social worker stopped by and listened to me blubber for fifteen minutes – then promptly gave me the name of a support group that meets an hour from my house. I am not making this up.

I’m inspired to write today because my query is this: Why is there not a standard protocol whereby the mental health of every cancer patient is assessed as regularly and thoroughly as our blood counts, and integrated into our treatment plans? How can we who are experiencing the pure hell that this disease rains down on our world and psyche be expected to ask for this kind of help? Or know when we need it? Or what kind of help is available? I fear a good many of us persevere in silence, bolstered by the constant refrains of how “brave” and “strong” and “courageous” we are.  We’re programmed to think that displays of weakness, fear or sadness are the mortal enemies of “staying positive”- which is supposed to keep us alive longer, or some other bullshit.

I also fear that if an oncologist or nurse asks us how we’re doing, they feel they can check the box as long as we don’t specifically say that we’ve purchased a firearm and are having suicidal thoughts. But more than anything, I fear that assumptions are being made throughout the cancer treatment processes that are inexcusably stupid.  Cancer patients are all doing some version the Coping Dance every day, but that doesn’t mean we’re not potentially in some serious emotional pain.  Doctors know this. Social workers know this. Why is it so consistently missed or ignored?

Case in point, on the cold, February afternoon that I was diagnosed with Stage IV metastatic disease, I was in the hospital with a tube in my side, oxygen up my nose, and morphine in my veins, recovering from surgery to remove fluid from my chest and lungs. I received and absorbed the devastating news from my doctor, alone. I asked what I presumed to be the appropriate questions about “survival rates” just to have something to say, but I don’t really remember much of what transpired after that because my head and heart just kind of exploded on impact. He’d been treating me for years and looked awfully uncomfortable. I actually felt bad for him. He left my room looking sad and helpless. And I sat paralyzed in my bed watching him walk away. The same evening at around midnight, a nurse came in to check on me and I asked her if I could please speak to someone.

“What do you mean speak to someone? What is this about?”

“Anyone, you – just someone, I don’t care who it is. I need to talk about this. I have to face my family tomorrow.”

“I can call a priest.”

“I don’t need a priest and I’m not religious. Isn’t there anyone..?”

“I’ll see what I can do.”

Ten minutes later, a chaplain walks in to my dimly lit room and asks quietly if he can pray over me.  Poor man. I told him he could stay only if he would promise to just listen, stop with the praying, and never once mention God. He was very gracious for most of it but broke his promise at the end and threw in some preachy stuff that I let slide. He was, after all, nice enough to listen to my anger in the middle of the night. But I couldn’t help think that someone should have been prepared to speak with me after being told that my cancer had spread to my liver and chest and was incurable. I mean, even my doctor was struggling with the news. Why wasn’t there someone trained and certified to coach, counsel, listen, help, and dare I suggest, follow up with me after I got home. None of this happened. It was all about scans, tests, tumor markers and pain killers. Not a whisper about how to address my feelings.

To further illustrate my point, after I had gamma knife radiation surgery on my brain last month, the follow up questions from the nurse who called me at home several days later were as follows:

“How are you doing, today?”

“Okay.”

“Any headaches or dizziness?”

“No.”

“Nausea or vomiting?”

“No.”

“Changes in vision or hearing?”

“Nope.”

“Great, Jude. Glad you’re doing so well.”

The end. That was it. No one bothered to ask me if suddenly having three fucking brain tumors had caused any, oh, I don’t know, STRESS?  It’s kind of unbelievable when you think about it. What is it that really matters, here?  If you successfully zapped the tumors in my head but I feel like throwing myself from a fifty-story building worrying about them coming back, what have you really accomplished?  Unless you spent every day with me, you would probably never have known that for the last few months I had been coming apart at the seams.  When the cancer spreads from your liver and chest to the brain and bones, its bases loaded. Luckily, a good friend who is so intuitive and special I wish I could clone her, sat me down and suggested I speak to a psychiatrist so I could get some help. She recognized that any semblance of joy had left my eyes and I couldn’t pull off the Look at Me I’m Coping dance anymore.  I told her I didn’t feel I needed to talk to anyone but she politely and directly let me know that at the very least, I probably needed an anti-depressant. Something that might help me recover what I had lost. I had never taken a maintenance drug for mental health before. In the past when I complained of stress or anxiousness about surgeries or tests, someone would write me a prescription for Ativan or Xanax with the instruction to “take five milligrams as needed.”  For a time this worked. But metastatic cancer is a round-the-clock shit show with no commercial breaks, so this option ceased being effective right around the time I found myself wanting to crush them up and bake them into pies.

Mental health matters in cancer treatment. There were days when I would look at the list of drugs I take and think, “What’s really the point?” Or when friends and family would go out of their way to share time with me and instead of enjoying their company, I would become silently consumed with anger and resentment because all I could think about was how their lives will simply go without me after I’m gone. Or when getting out of bed in the morning became my worst nightmare because it meant having to face another day of the Coping Dance, when I used to have a job, a future, all my lady-parts, hair, mental acuity, and self-esteem.  It matters because it’s the difference between having a life and just waiting for it to end.

I met with a psychiatrist and started on an anti-depressant medication about six weeks ago. It has changed my outlook, calmed my spirit, and allowed me to view my life through a lens that is no longer entirely grayed out by grief. I can participate, feel joy, and hold up under the scrutiny of loved ones who know the real me.  It’s not perfect. I still have bad days. But now I can laugh out loud and no longer feel like I’m phoning it in. I am re-connecting with the world around me experiencing a full range of very human emotions. Why it took me so long to figure this out, I don’t know. But I sure wish one of my zillion health care providers would have taken the lead to help me get here sooner. It’s really good to be back.

And for however long it lasts, to feel like writing again.

 

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Breast Cancer Dollars

Originally published on Pink-Link, July 9, 2013

A few weeks ago, I wrote a piece for The Huffington Post entitled “Strangled by Their Own Pink Ribbon” that went slightly viral in the breast cancer and health communities. It gave me pause because I’ve written blogs for HuffPo before that were read solely by me, my publicist and a few bored family members. So the response, particularly on Twitter, was quite unexpected and I’ve been thinking about the reaction ever since.

The crux of the piece was my rationale for finally abandoning The Susan G. Komen Foundation for the Cure after several years and many dollars of fervent support. Thematically, it apparently touched a good many people who felt the same way, or had similar feelings but hadn’t yet given those emotions sufficient air-time. I can understand why. It was very hard to “come clean” and not just a little scary to leave what had become the mother ship for breast cancer fighters. I can compare it to being in a co-dependent relationship that I had to break away from. Granted, I was a willing participant raising money, walking, and being a spokesperson for an entity that was giving me community, hope, and a sense of accomplishing something. The problem of course, was that my intention for raising all that money and rustling up all those supporters was to funnel monies toward the smart people working to find a cure. Once I was convinced that Komen was ill-equipped to meet that expectation, the relationship had to end.

That aside, my decision to jump ship brought me to an unfamiliar place with respect to charities and fundraising. What’s next?

If we’re talking about the mission of finding a cure for breast cancer, every person I know would call themselves a stakeholder in that effort. Every single one. So, what do we do? We give our money away to organizations that either through their brand marketing, personal associations or geography, speak to us, trusting that the good work they purport to do will get done. Or we participate in walks, runs and bike rides, utterly convinced we’re taking action that will result in breast cancer going away someday. This is all well and good, except we haven’t made a dent. In fact, if you added up every dollar we as a country have donated in the last ten years toward that mission, and then tried to make correlations to patient-friendly, actionable “breast cancer breakthroughs,” you would cry. Or howl, like I do, because it’s billions upon billions of dollars with a big zero in the cure column.

Interestingly, a recent TED Talk by Dan Pallotta called, “The Way We Think About Charity Is Dead Wrong” introduced the concept that perhaps we expect too much from non-profits who underpay their talent (compared to the corporate sector) and are vilified for over-spending administrative dollars. He asserts the opposite: that they should be investing big in areas such as acquiring talent, brand marketing and lobbying in order to reach larger fundraising and “endgame” goals downstream. He alleges that we stakeholders irrationally expect to give our money away, have it be used for one narrow or specific purpose, and not have anyone doing the hard work make a good salary. We also don’t want these organizations looking or sounding like real businesses although we expect them to be more effective and honest than the for-profit sector. He has a point. (Ironically, he was closely involved with brainstorming and sponsoring the Komen 3Day events and referenced them as a huge success, although he never used the Susan G. Komen name. He called them “a breast cancer charity.” He’s clearly not in the trust circle anymore, either.)

Dan’s talk was very compelling but felt incomplete to someone like me, sitting on my wallet and staring at my sneakers waiting to feel some sense of trust in an organization that truly understands how to be a charity but has the DNA of a business: transparency, urgency, accountability, clear goals, fearless execution, and honest leaders. In simpler terms: who gets my Breast Cancer Dollars now? I ask the question not to be obtuse, but because I was under the Komen banner for so long – I simply don’t know. I’ve only recently come into contact with some wonderful people here at Pink-Link, the New Hampshire Breast Cancer Coalition, and have been learning more about Stand Up to Cancer, and the National Breast Cancer Coalition with their impressive January 1, 2020 goal to eradicate the disease. I know there is good work being done out there. I’m just still a little uneasy about the whole “trust” thing.

Admittedly, I’m kind of desperate. I’m truly terrified that there might be someone, some brilliant someone, right on the cusp of a giant breakthrough – and they won’t have the funding they need to keep going, even though millions are being donated somewhere for that very purpose. Or that they work for an organization that isn’t on someone’s political radar. Or that those monies went elsewhere, unchecked. It keeps me awake at night.

At the time I finished my book, “Breast Left Unsaid,” I was still hopeful that I had outrun this disease. Just before I published I was diagnosed with a metastases and the term “charitable giving” took on a whole new meaning for me. So, at the risk of reducing a complex issue to a childish schoolyard taunt: prove to me you’re trying to save my life before you ask for my financial support; show me how you’ll avoid the mistakes Komen made before you expect my trust.

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Metastatic in the Land of the Living

Originally published in The Huffington Post / HuffPoWomen, on June 26, 2013

My world is going by too fast. The volume is up before I leave my bed in the morning. I try to rein it in, but there is always some invisible force in my head countering that effort; applying pressure for me to keep up, keep moving. It emits a sound that has a steady cadence to it; a forward momentum. And it’s loud. At least, to me. So I get up at 5:00 every morning.

This is not about having too many electronic devices and overdosing on social media by way of my iPad, smartphone, and laptop. Today I am sitting in my peaceful, isolated yard on a gorgeous spring day, when I should be listening to the dependable soundtrack of the Saugatuck River and a few birds chatting around the feeders; but instead I hear the seconds ticking by with the persistence of a giant metronome, tracking time wasted rather than time fulfilled. I have metastatic breast cancer.

And I’m troubled by a phone call I received yesterday. A friend, calling from her car to “check in on me” was trying earnestly, albeit clumsily, to include me in her work-life narrative but was circling way outside my narrow orbit and quickly ran out of things to say. She’s a chatter-hound. She is never at a loss. But today, she was off her game and sounded harried and uncomfortable. We talked over each other. We had lost our rhythm. She didn’t hear most of what I said, and I was, if I’m being honest, ultimately uninterested in what she was saying. After all, I am stuck in the house today because of crippling fatigue and the incessant pain in my legs from my last chemo blast, so I am having trouble relating to her latest work angst, and am more than a little annoyed that this phone call just made me feel pitiable in her eyes. Not that I don’t care about her or her work drama, I do. But I no longer had anything of substance to offer in response that I hadn’t already said before. She was still moving in a professional world I had to leave behind. The static on her mobile connection became metaphorical and I made an excuse to say good-bye to kill the awkwardness. In hindsight and in her defense, she was the one who was trying. I was just being pitiful.

When you have cancer, or I would imagine, any incurable advanced disease, time hangs heavy in the air no matter how lovely the spring day. Some friends begin to slowly, almost imperceptibly, drift toward the horizon beyond your field of vision. The sound of the birds and the river and the insects are no less a wonder today, but they are subsumed by the louder more insistent noises in my head; the ones no one else can hear. Nor would they want to. So I let some friends drift.

When I meditate I see the same visual over and over again until it becomes so hypnotic I can sleep sitting up. It is a black aperture in the shape of a human eye with nothing coming back at me except the overwhelming sensation that I could get to the other side if I wanted to. Which I guess is the point. I don’t want to. I am still not completely accustomed to the idea of being sick for the remainder of my life. The concept or philosophy of living and dying at the same time that so many Stage 4 cancer patients eventually adopt, is one we should all embrace on some level to help us push on through our fears, excuses and procrastination. But we don’t. How could we unless we are forced to? No, most of us live from task to task, conversation to conversation, event to event, meal to meal. Circling days on the calendar and checking off To-Do lists. Occasionally when someone close to our heart becomes very ill or dies, we get a grief-induced spurt of fearlessness to counteract our brush with mortality; a surge of Carpe Diem spirit. A heartfelt renewal of relationships we allowed our busy lives to obscure. And then despite all good intentions, it fades.

Even in mid-life, when we arguably worry more about our future and possibly even our own death or the death of others from the onset of illnesses we are now more prone to, we don’t dwell there. How could we? It is all unknowable and our hearts and minds simply cannot stay in that muck and continue to be happy and productive humans. But oh, how we plan, and dream, and talk endlessly about things in our future – those mysterious days, months and years ahead of us – as if we are guaranteed a seat on the bus that will take us there alongside everyone we love. That is the very business of being in The Land of the Living! Not just the moment; but the assumption of the future moment when things will be better or different, or in some storybooks, perfectly unchanged.
Thankfully I am not actively dying, but I know I have limited time so I hold on to this middle ground. A position where I have one foot in two worlds: The Living World filled with tasks and energy and talk of things that will happen soon or at some later date, embracing all the activities of my loved ones and participating when I can. A world in which, although I had to stop working, I published my first book and continue to write and advocate for a cure for breast cancer; a world that is joyful and on good days, completely of my own making. I have one foot gratefully planted in this world of willfully trying to swim the same tide as everyone around me to keep reality at bay.

The other foot is in The Sick World. The place where I manage to chemo, debilitating side effects and endless doctor visits; where I navigate life moving fearfully from scan to scan. A world in which I am branded by a port protruding from my chest so I can always be ready for injections. A place that grows narrower and less populated with every passing month; where each day’s journey begins as a tightrope walk to stay emotionally focused; where I avoid any future commitment more than two months hence. A fragile place that after seven years, countless surgeries and thousands of drugs ingested or pumped into my body, I am wisp of my former self; scarred and hairless and valiantly, some might say stupidly, still trying to slay a mighty dragon with a poison slingshot. Not because I don’t know these drugs will eventually fail; but because it’s all I have to work with for now. If all of this sounds utterly hopeless to you, please take a moment and Google “treatment for metastatic breast cancer.”

I ride waves of being able to thrive in The Living World, at times completely drowning out the incessant metronome. Then, often without warning, I crash and get pummeled, sucked into the undertow of bad news, shrinking quality of life, and pain. I suppose it’s like everyone’s timeline in life, just condensed into a smaller space, and amplified, like the inescapably shrill sound of crickets on a summer night when you can’t sleep.
But hear me out, just because these things are knowable does not mean they make for good conversation. So they mostly stay in my head. Or I fitfully write them down, usually making no sense at all and deleting it before my husband comes home from work. My tangible world with all my beloved people in it is speeding past me. My future world that used to house all my grand plans and crazy hopes, and was my common denominator in The Living World, is vanishing before my eyes.

All but for the noise; the busy, jumbled sound of dreams with nowhere to go.

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Strangled By Their Own Pink Ribbon

Originally published in The Huffington Post / HuffPo Impact on June 7, 2013

After I recently published my memoir “Breast Left Unsaid” chronicling my first battle with breast cancer, my publicist suggested that I become active on Twitter. In doing so, I was immediately and quite happily introduced to an enormous, global breast cancer fighter/survivor/advocate community that welcomed me and my bald head with open hashtags and great commentary.
At the same time, I was involved in a local Komen Connecticut Affiliate event as a spokesperson; building a team and fundraising for a Race for the Cure. As I tweeted about the event, I was also quickly introduced to a tsunami of hatred and resentment toward The Susan G. Komen Foundation. I had my own issues with them following the Planned Parenthood debacle, but for personal reasons was not yet willing to abandon Komen CT, our local affiliate doing good work in my home state, including a research grant supporting one of my oncologists. While I was not at all surprised by the negative sentiments, the volume and intensity was astounding. I’m talking lots and lots of exclamation points and caps. BIG. KOMEN. HATE.
At first, I was unwilling to buy-in to all the anger. I have Stage 4 breast cancer now, and my mother is a survivor. My family’s team, The Sole Sisters, has participated in Komen’s Boston 3Day every year since my first diagnosis in 2006. We’ve raised enormous sums of money but it’s the sense of community and emotional solidarity we’ve shared during those events that remains so positive and sustaining. I met my husband on a training walk; there’s a whole section about the impact of this event in my book. It means something to us. I’m not talking about Komen as an organization. I’m talking about all the selfless human beings, mostly women, who morph into one big team of love and support for a few days every year; people who understand the horror of this disease on a personal, visceral level. We always understood and accepted that the goal was to unconditionally hold each other up while we raised money for a cure. I kept hoping that by some miracle, new leadership would swoop in, clean house and re-brand, so Komen could become a new and better force to be reckoned with in this fight. I even went so far as to tweet Peggy Orenstein, jokingly asking her take up the cause of trying to rescue Komen from their bad leadership. I believe her response was, “HA!”
I quickly discovered a very hard line between people who considered themselves serious advocates in the fight against breast cancer and those who are still foolishly drinking the Komen Kool-Aid. You cannot be both. Here are the key points outlining why I believe that line exists:
1. Last February, Komen’s politically motivated decision to deny funding to Planned Parenthood for breast screenings was an unmitigated disaster. Even though CEO/Founder Nancy Brinker tried to dial back that message several days later through her public relations machine, during an ill-fated interview with Andrea Mitchell (a breast cancer survivor), Brinker came off as shrill, unapologetic, defensive and very guilty. She poisoned her charitable organization with an obvious right-wing political agenda having no connection whatsoever to the mission. No amount of damage control short of a full public apology, firing conservative zealots like Karen Handel from her leadership team, and resigning from Komen herself, was going to fix it. None of this happened.

2. Once Brinker was under a white-hot spotlight, so too was her gigantic salary and list of executive perks. To the loyal, individual fundraiser who begged friends and family for donations every year, even in a miserable economy, learning that Komen’s CEO was taking home $685K was insulting beyond measure. (It’s worth noting that the 3Day event requires a minimum of $2,300.00 in fundraising per person, in addition to hefty registration fees, or you are not allowed to participate. Insult: meet injury.) Supporters exited in droves.

3. Komen was already struggling with a transparency problem at the time. As the anti-pink wave washed on their shores again, they came under fire for over-spending on administrative and executive costs, while all but ignoring the neediest in the breast cancer world: the metastatic or Stage 4 patients (i.e., the people who are dying). Upon further scrutiny, a mere 15% of Komen’s war chest was going toward research! Fifteen percent. The metastatic community was livid, demanding that more monies go toward research and front-burner visibility for those with advanced disease. Critics believed that by focusing more heavily on “early detection” and “awareness programs” Komen gained stronger statistical wins, which in turn helped boost their brand and fill coffers, but did little to further their stated mission of finding a cure. It also helped keep their marketing images pink, healthful and winning; as opposed to sick, pale and dying.

4. If that weren’t enough, back in 2010, Komen earned a reputation as a corporate bully. They trademarked “For the Cure” and “For a Cure” for use in advertising, and then legally went after charities no matter how small, to change their names, slogans and in a few cases, their marketing colors or risk a costly day in court with The Big Girls. The mere fact that their legal counsel was spending time and money chasing down and intimidating other charities who could ill-afford to fight them, was simply unforgivable.

5. Finally, the good work that Komen did by bringing global awareness to this god-awful disease was nothing short of awe-inspiring. The scope and reach of the message to women about breast cancer was ambitious, hugely successful and Komen grew to have a rightful position of prominence and influence in the conversation on women’s health. Then somewhere along the line, the concept of “awareness” took on a life of its own until we began choking on pink everything and eventually came to understand our “pink ribbon Komen purchases” were really just corporate co-profiteering off the backs of sick people and the people who loved them. I cite in my book my utter discomfort at seeing the Komen swirl on everything from “my home heating oil truck to a bag of romaine lettuce;” the charitable equivalent of jumping the shark.

Several months ago, Komen sent out a very detailed survey to its “largest supporters” to try to understand how they could rescue their brand. I unloaded an hour’s worth of very tough feedback but screamed out loud when one of the questions wanted to know how often I attended religious services. That intrusive survey was obviously the result of Ms Brinker & Company trying to uncoil very uncomfortable pink ribbons from tightening around their necks. In the end, politics, greed, and power-hungry leadership destroyed the mission and took with it our precious cash, hopeful memories and valuable trust.

The topic came to a head for me again this week when Komen cancelled half of its 3Day events across the country. Honestly, I don’t care what their talking points say about why they had to do it. It’s clear to me now that a large enough percentage of their supporters finally just gave up on them; don’t trust them; went elsewhere with their money and sneakers and pink t-shirts. But their inability to turn the ship around feels more like a personal betrayal than a failure of vision to those of us who invested so much time and money and heart. I guess that’s where the anger comes in.
With all due respect and apologies to my friends at Komen CT, to my family and to countless, generous supporters over the years, I have no energy or time for Big Komen Hate, but I have the good sense to move on and throw my weight and voice behind organizations and people who still stand a chance of being a force for good in this fight. I hope you’ll join me.
The late Susan G. Komen and all of us who will die from this disease, deserved better.

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Meditation and Big Buddha Cigars

Originally posted on The Huffington Post “HuffPo/50″ – May 2013

My friend Michelle is driving with me to the doctor. From the moment we leave my driveway, we are awkwardly chit-chatting, bouncing erratically from topic to topic unable to resolve or complete our fragmented thoughts as if zipping through our own personal Flipboard apps in our heads – and not really listening to each other. It’s 8:00 am and we’re sitting in thick traffic. I’m already mentally exhausted.

After a brief silence she says with an exasperated sigh, “I think I need to learn to meditate.”

“Okay.”

“Like, slow the fuck down, right?”

“Yep.”

“Both of us. I think it would be good. Do you meditate?”

“Sometimes. I think.”

“I can’t even sleep anymore…”

“You can’t…?”

“I mean, I toss and turn and I have lists for my lists and three in the morning – I’m wide awake pissed off and completely unable to get back to sleep. Sucks.”

“Why don’t we try the Buddhist Center up on the ridge? They have classes – free, I think, for beginners.”

“You’re ON.” We are SO going! I have always wanted to go there. We need this, right?  Some Zen.  Gotta learn to shut my brain down.  God, this fucking traffic, where are all these people going?! Look up their class schedule on your phone right now because we’re going.” There is no disagreeing with Michelle once she declares and this happens to be a solid idea. So we go.

We arrived at the Buddhist Center for a Sunday class that turned out to not be a meditation class at all but a presentation by a Jewish psychotherapist/author also studying and interpreting ancient Buddhist texts. We quickly learned that their website calendar was merely a suggestion; no one seemed committed to keeping tight schedules here. One of the regulars helpfully informed us to come back on Wednesday for the meditation class.  By this point we had scoped out the place enough to know that it was a legitimate Buddhist retreat complete with incense-infused air, assorted altars, big happy photos of the Dalai Lama, and all manner of teas set out for our blissful consumption. When we arrived for our Wednesday class we were giddy with anticipation of learning, in one evening, hopefully in less than an hour because we both skipped dinner and were starving, how to shut the last fifty years of noise out of our brains.

My husband and I were married by a Buddhist priest four years ago, and although raised Catholic, like Michelle, my sensibilities and spirit aligns much more with my “inner-Buddha” than the nice carpenter from Nazareth. But that shouldn’t matter; this is not about religion. This is a quest to shut down my crazy-busy, loud, annoying, buzzing, over-stimulated cerebral cortex through the ancient practice of Learning

How to Block out Stupid Shit, aka, meditation. All in all, I felt very comfortable with the choice of a Buddhist environment and was a little thrilled once we arrived.

The Center is laid out like a large, Colonial home and peopled with smiling volunteers and similarly-sized Buddhist monks (as if there were a special mold from which they all sprang) and many, many cats. I was “all good” up until seeing the cat infestation because I’m deathly allergic, but thought it unlikely that I would die of an asthma attack during an hour-long class, and if I did, I knew my chances of reincarnation here were very, very good.

“Jude, we so need this.”

Yes we do.”

We wandered into a large room that was under construction and therefore, open to the great outdoors through flapping blue tarps that brought the temperature in the room down to a chilly 50 degrees. I knew when I saw the small, gold and red altar and meditation mats lined up along the floor that this was to be our resting place for the next hour. There were pillows strewn about for cradling our middle-aged posteriors and a general sense of pleasant disarray in the room. However for some god-forsaken reason, no one thought to ignite the propane heater. There was no heat. At all. This is New England, in the spring, for Pete’s sake; heat is still required after sundown.  I turned down the volume on my disappointment thinking (foolishly) that surely when class begins it would be someone’s job to crank it up to keep our teeth from chattering. I made myself comfortable, sort of, on a red velvet covered mat, precariously balancing my ass on a purple, round pillow covered in construction dust.  Curiously, there are itchy Mexican blankets strewn about the room as well, which made me fear that the heater was just a prop, so I grabbed one and snuggled under it hoping that it was not one of the cats’ favorites or I would be also snuggling my rescue inhaler very shortly.

Michelle sat in the row in front of me and we both realized too late that we had both worn very noisy jackets. The fabric reverberated much like a candy wrapper in a movie theater whenever we moved or ventured to breathe, but there was no way I was going to take mine off. I wear hats in warmer temperatures. So I just planned on remaining completely motionless for the rest of the hour so as not to disturb anyone else’s chi.  The other students filing in all seemed very relaxed and dare I say, a little unkempt. Some people can wear flannel and it looks nice and rugged and LLBean. Others let the flannel wear them until it takes over and becomes every part of their exterior color and texture including their hair. They have no luster. Their pallor becomes softly furry. They are muted and frizzy-haired Flannel People. And they’re a little smelly.

Taking off one’s shoes before entering the Center is customary and I’m totally comfortable with that. I do it at home. Sitting in a room with funky Flannel People who are in their socks, right next to my head and nasal passages, I’m not so fine with. Poor Michelle was downwind of someone who apparently had slept in his workboots for the past six weeks and just decided to remove them before class. Opposite of Relaxing.

So we’re cold, perched uncomfortably on the floor, taking in the sights and scents of the space and its inhabitants, when in walks our Teacher for the evening in his saffron robes and a toasty v-neck cashmere sweater. Apparently he got the “no heat” memo.  Everyone stands and bows so we follow suit with the standing but I didn’t have enough information yet to decide whether I was on the bowing team.

He has a beautifully round, friendly face, and I’m now getting excited about learning something; taking some wisdom or knowledge home with me for safe keeping. I love being in the presence of good teachers; it’s one of life’s special gifts, and cold be damned; I’m starting to forgive the permeating bad sock smell and hold out for goodness.

Several people bow deeply now and are mumbling prayers that we can’t hear or understand. They’ve started without us. I thought this was a beginner class and begin feeling inadequate. Then Teacher hands us all binders with English text that we can read from to begin our first meditation. I don’t know why I have the feeling that I’m intruding, but I do.  Michelle is doing some world-class fidgeting trying to get comfortable while we read through the passages and I am trying to stay hopeful. The droning buzz of people praying aloud and in unison washes over me and I begin to feel the same awkwardness I used to experience in church. When people are all saying the exact same thing out loud because they are supposed to, but don’t necessarily want to; it’s weird. Like a cloud of indifferent obedience.

Our Teacher asks us in broken, no, that’s not strong enough, shattered English, to begin where we left off last week and to eliminate our “destructive minds” although in reality he was saying “distracted minds” but I didn’t find this out until after class by someone who could actually understand what the hell he was saying. Talk about distracting. So I closed my eyes and tried to do as he asked; but then he introduced more unintelligible instructions to the mix by telling us that while we were concentrating on eliminating thought from our minds, we should also be thinking about a four-step process in every breath, which is to be executed with each inhale and should only take us one second to do, eventually, I guess when we’re good enough at this. But for the life of me I can’t imagine how organizing four thoughts of how to breathe into one second is relaxing or helpful. It feels more like that first time you go to yoga and some asshole has their foot behind their head during warm ups. Just because.

I’m ignoring the four-step breathing and just trying to keep my eyes shut, when all of a sudden the tarp holding the room together starts flapping shepherding in the cold night air and completely destroying any hope of concentration. All of my senses: the smell of the bad socks, the snapping tarp and indecipherable Teacher, the frigid room, my aching coccyx, and my left leg that is now completely asleep and sharing pins and needles when I breathe – are working against me. Michelle and her noisy jacket are changing position every three seconds now, so I know she’s back to her mental shopping lists, garden planning, Pinterest porn and real estate tasks – or planning to kill me for agreeing to do this rather than talk her out of it, when she could be home eating dinner and drinking wine by a fire.

Then the Flannel People begin speaking and asking earnest questions about how to expand this practice amidst the earthly noise of living day to day in the real world. Several exchanges occur, none of which we can understand, but everyone else appears to be quite satisfied with Teacher’s rambling responses. Then all of a sudden, one of the deepest breathers piped up and bellowed, “Um, I have a QWEZchun” in her thick New York accent. “There’s a place called Big Buddha Cigars downtown, it says that, right on the sign:  do you think that’s disrespectful?” already inferring by her tone that she thought it was in clear violation of something serious in the Tibetan Handbook and wanted his validation. Even the Teacher cracked a smile at this point and said in his clearest English yet, “A name on a sign should not be capable of disturbing your happiness.” And then he smiled even more broadly to let her know he was done opining on Buddha Cigar signage.

And there it was. The reason I came here. Silly me. My intentions were quite different of course, expecting to be cocooned in the peace of a magical, meditative place that would give me all the tools I needed in one visit to quiet my mental hard drive – but I totally got my donations worth with that last little nugget from Teacher. I also realized full well I could have learned it from some inspirational graphic on facebook posted by one of my glass-half-full friends, but the learning was worth it, and here it is: We have to stop looking to pick fights. That sign is not hurting anyone. The cigar people might even be Buddhist and mediate daily about their tobacco habit. We just don’t know. But to work up a head of angry steam over something that is pretty meaningless in the scheme of things is just stupid, and always a good lesson to remember. I loved the fact that all the Flannel People were shaking their heads in solemn agreement with her as if this was a Big Question that required his guidance. At the end of the day, I guess we all got what we wanted.

Michelle and I left the class tired, cold, hungry, and annoyed. But the next day we screamed and laughed very loud, and made a new plan to go to our yoga studio when they hold mediation classes, because we’re not giving up that easily.

“Okay, we owe it to ourselves to go to a class where we can understand what the fuck is being said.”

“And they turn the heat on.”

We also realized that taking it all so seriously was probably not the way to go. If we can quiet our minds long enough to laugh at Big Buddha Cigars, or just not give it any thought at all, then we’re already a step ahead.

Sometimes friends and Teachers work in mysterious ways.

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Angelina’s Decision

I woke up this morning and read about Ms Jolie’s brave and I daresay, wise decision, to have a prophylactic bilateral mastectomy.

To most people who don’t have high risk factors or the disease, this might seem extreme. In fact, Peggy Orenstein’s recent piece in the NY Times suggested how “pink awareness” has led to an epidemic of overtreatment for breast cancer; interesting coming from a survivor, but her opinion, nonetheless. The article was well researched but seemed to have an angry tone that I just could not get past. It also suggested, erroneously, that young women were now afraid of their breasts because of all the hype. Well, Ms Orenstein, young women under the age of 40 are the fastest growing segment in the development of advanced breast cancer. So I’m okay with them being a little scared. It sucks to die before your 40th birthday.

Talk about timing: I spent this Saturday as the Honorary Co-chair for the Komen CT Race for the Cure in Connecticut, and spoke to so many women and yes, men, fighting this disease at all stages: from fear and sadness from loss of a loved one- all the way through Stage IV terminal. Some call themselves “survivors” if they are currently cancer-free, but others are like me, still in the fight, or “in the soup” as I like to say. And I will be for the rest of my now-shortened life because I am Stage IV. Not so, my mother, who lives in fear of a third recurrence at 82 years old. She calls herself a survivor.

The bottom line is that every case, every woman and man, indeed, every genetic mutation causing this wretched disease is unique to the individual. If you are a woman with any risk factors, even if they are not as high as Angelina’s, the decision is between you and your doctors to determine the best path for your peace of mind and more importantly, your long-term health. And I use the plural “doctors” because you should speak to more than one. There is no more personal choice than deciding to voluntarily amputate a precious part of your body in advance of disease. There are no RULES. So everyone who wants to find a magic formula to make themselves feel better about this will have to wait a long time – and your judgment of others who choose this excruciatingly difficult path should not be anything short of kind support. I don’t believe in “over-treating” either; but when you can’t effectively predict what the enemy is going to do, you go with the data you have.

This is an art; not a science. Even after you’ve been treated with the best of what the medical community has to offer, it can still come back. It does for too many of us; 40,000 people a year still die from breast cancer in this county alone and that number is not going down. Nor is it going away. No one is immune. Not even the most beautiful woman in the world.

We’ve got your back, Angie.

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Getting My First Book Over the Finish Line

Originally posted on Girlfriends Book Club blog April 8,2013

I am a huge, borderline stalker fan of writer David Sedaris and have been to many of his readings and book signings over the years. Sitting in the audience of this master memoirist, listening to his fragile and often hilarious voice, I am always transported and never fail to connect to him in an extraordinarily personal way. This oft-repeated experience translates into me buying five to ten copies of whatever book he is selling and then waiting on line for hours so he can sign them all. Then I tell everyone I know and like to buy it because it’s a good read and he smiles at me when we chat.

So, it should come as no surprise that after publishing my own memoir this past October, “Breast Left Unsaid,” I was already sold on using the same format, albeit smaller in scope, to get people talking about and hopefully buying my book. I have done some acting in my day so it’s sort of a natural for me. Truth be told, it’s also how I edit. I read aloud as if in front of a large and rapt audience that has paid good money to see me; I gesture and modulate my voice appropriately, and imagine myself wearing something quite fabulous yet understated.

While I was writing the book though, I never proactively thought about marketing or sales. “Breast Left Unsaid: A True and Uncensored Story of Survival” recounts an 18-month period in my life when a Mid-Life Category 5 Hurricane unleashed wave after wave of damage on me, including but not limited to a divorce and a breast cancer diagnosis. I wrote to make sense of it all. I wrote and edited and re-wrote and polished until I was satisfied I was telling my story with honesty, humor and a compelling narrative, but at no time did I stop and think, “Who is my audience? What is my target demographic?” This is partly because right up until I completed the manuscript I was still deciding whether I would actually publish and lay bare my soul, my boobs and my loved ones in such a public way – and the other part is that as a first-time author, I was completely and woefully ignorant about the process. All I knew was that I had this story; this terrifying, hilarious and absurd roller-coaster of a tale to tell, and my overwhelming instinct was to just finish it.

However, in January 2011, two weeks after I put the period on the final sentence of the manuscript, which ends on a hopeful and I daresay, positive note, the universe saw fit to take me down a scary new path; I was diagnosed with a serious recurrence of breast cancer. It had spread to the lungs and liver. I was now the dreaded and irreversible Stage IV and I had to put my dreams of publishing aside. I needed now to focus 200% on my health, my family, my job, new treatments, and somehow make peace with the harsh reality of my frightening statistical survival rate. The irony of the timing was not lost on me. Here I was trying to push a message of hope and humor out into a world of people dealing with disease and other simultaneous shit-storms in their lives, and I’m now fighting for my own. Again.

“Breast Left Unsaid,” this labor of love and time and energy, now sat dormant on my hard drive gathering virtual dust. I made half-hearted efforts to push it along when I was feeling up to it but it wasn’t until the summer when my husband Philip, my amazing tech-wizard All-Around Selfless and Handsome Partner-Dude, promised to get it over the finish line for me. He jumped neck deep into the crazy and confusing waters of self-publishing, and within two months of taking on the project, it was done. On October 10,2012, Phil called me over to the computer and said, “Congratulations babe, I want you to hit that publish button right there.” Then he smiled and said to no one in particular, “My wife is an author.”

A few days later, I went to my local library, The Mark Twain Library in Redding, Connecticut, that Mr. Clemens himself built in memory of his daughter making it a sacred shrine for Twainiacs. I asked the librarian if she’d be interested in me doing a reading to launch my new book. Her eyes lit up and I knew we had a deal. It was breast cancer awareness month (or BoobTober), so they slotted me right in. The local newspaper interviewed me for the event and I alerted friends via social media.

To my delight the turnout was standing room only! I felt like David Sedaris except for the pencil skirt and sassy boots. It was then that I decided I would pursue more events where I can personally tell my story and look into the eyes of my readers. Slowly and steadily, and in a very gratifying way, I’m selling books. I’ve done several events now and schedule them for my “good weeks” in between treatments so I can really have some fun with it. My publicist was phenomenal in getting me some terrific media spots on national radio, guest blogs, local TV, etc., for the initial launch. But honestly, I truly love the book events.

Remarkably, “Breast Left Unsaid” is landing in the hands of a lot more men than I ever anticipated. They send me heartfelt and sometimes devastating feedback about how they feel they’ve been granted entry into “secret society” of women and the realities of breast cancer. The medical community has taken notice and I’m doing a keynote speech at a hospital in New Hampshire because they want to enhance their patient experience and feel that my book helps them “see the other side.” I’ve also been asked to be an honorary chair for Komen Connecticut’s Race for the Cure along with the actress Laura Linney. I honestly couldn’t have planned this if I tried.

I didn’t write to sell a book. I wrote to tell a story. If I had tried to engineer it for a particular demographic, it would have been a less than true account and I would have lost out on reaching the people I have. And if I couldn’t chat with readers in person and hear first hand that my words have helped them; I would have missed out entirely on finally discovering what drove me to write in the first place.

Posted in This Artistic Life | Tagged , , , , , , , , | 4 Comments