roll over, play dead

Today, not to minimize real weather catastrophes like tsunamis in Indonesia and hurricanes in New Orleans, has been a rain-soaked nightmare in the City of Brotherly Love.  In our house, the day began, as Saturdays often do, with Mike and I conversing over a cup of coffee, planning the weekend.  When to work, run errands, exercise, begin packing.  With two essentially unplanned days ahead of us, surely we had more than enough time to accomplish everything we needed to get done, and still have time left over to relax, perhaps watch a movie and enjoy each other’s company.

One of the first things we realized this morning was that we were completely, without question, out of dog food.  This was a first: the emergency dog food run.  OK, so we quickly added that to the list of things that needed to get done.  A few hours later (during which I wrote my previous post), we decided to run out, get some dog food, pick up Mike’s dry cleaning so he’d have a clean shirt for his trial on Monday and maybe grab some lunch.  Little did we know.

The first leg of our journey, during which we shot down to South Philly for the puppy chow, was no problem.  Sure, the winds were so strong that that car was being blown around on the expressway, but we were in and out of the giant pet store in five minutes, and traffic was light.  Then, we made the fatal mistake of turning our car toward Center City.

At 20th and Chestnut, we encountered instant gridlock, and got nowhere fast.  The streets, much to our surprise, were crawling with drunken revelers engaged in a pre-Saint Patrick’s Day pub crawl.  Then, at 17th and Chestnut, the gas tank indicator light came on.  Great.  Stop and go traffic (much more stop than go), and running out of gas. Clearly, there’s a metaphor in there somewhere.

We eventually made it to the dry cleaner, with our collective blood pressure rising.  We abandoned a plan to swing by Mike’s office so he could pick up some trial materials, and began our crawl (a generous description) back to Northern Liberties.  Every intersection was a nightmare, as pedestrians with inside-out umbrellas floated in between the stopped cars.  It seemed quiet likely that we would run out of gas before we made it to the station, and I began mentally preparing myself for the half-mile sprint to Delaware Avenue from Old City, with a soggy pile of cash in my pocket, and then running back to the car, gas can in hand.

By some form of divine intervention, we just made it to the gas station, and instantly my heart lifted.  It was still a vile day, we were both hungry, and we had just spent a torturous hour getting absolutely pummeled by the rain and the traffic, but at least – at the very least! – I didn’t have to make that mad, soaking wet dash to the gas can.  We were back on track, and would make the most of this rotten day yet.

After a very comforting grilled cheese and avocado sandwich and a much-needed bottle of PBC Rowhouse Red, I decided it was time to start tackling some packing.  Moving day is four weeks away, and it seems time to get serious about getting organized.  So down I went to the basement, in search of boxes and the tape gun, only to discover an enormous pool of standing water, seeping out from the middle of the basement floor.

All I wanted was a few lousy cardboard boxes so I could get a little packing done, and suddenly, I was Jennifer Connelly in DARK WATER.  “Why,” I silently cursed. “WHY WHY WHY am I being thwarted at every single turn today?”

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I emerged from the basement with wet socks and my pants covered in dust.  After packing a few boxes of books and bringing up another stash of collapsed boxes from the basement, I said to Mike, “You know, I think this is just one of those days when you have to give in, say ‘Uncle,’ whatever.”  It seemed apparent to me, as I struggled in the corner of the basement to extract the boxes while avoiding falling ass over end into the giant pools of water, that there was some larger force at work today – telling me to relax, to stop moving, to be still.

I guess there was a moment, when I thought I was going to crash into the dryer while I wrestled with the boxes and the surrounding crap, when I felt like pounding my fists on the wall and screaming and crying about how cancer has ruined my life.  But then, somehow, I must have caught myself, taken a breath.  When I realized, this is a ridiculous day.  We have lived in this house for three and a half years and have never once had water in the basement;  now, four weeks from moving, we have a flood.  This is absurd, but this is not cancer’s fault.

I often wonder if other cancer patients and survivors fall prey to this habit – of blaming all forms of misfortune, big and small, on their disease.  It’s something I find myself doing all too often, and I am just glad that today, before I went too far off the rails, I was able to realize that rather than fighting the nonsense unfolding all around me, I was better served by just rolling over and playing dead.  Tomorrow is another day.  The rain will let up, and we’ll try again.

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the RIGHT NOW! box

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Last month, I visited the genetic counseling folks at Penn’s GI Practice.  I sat with a GI doctor, a genetics counselor, a genetics intern, and some other unidentified young physician.  Before I met with the lead doctor, the intern was given the opportunity to run the show, walking me through laminated diagrams of what the HNPCC genetic mutation looks like on paper, in addition to reviewing for me all of the various forms of cancer which have appeared in both my maternal and paternal relatives (gee, thanks so much for telling me about my own family.)   I signed a bunch of consents, listened to the doctor tell me about all of the different kinds of surveillance I would need in the event I tested positive (which they seemed confident I would) and eventually went and had my blood drawn (the phlebotomist didn’t do such a hot job, and left me with a livid bruise that lasted more than a week.)

After my visit, something dawned on me:  not one of the people I came into contact with during my “counseling” session thought to ask me, even in passing, how I was doing. You know, just in general.  As in, shit, you were diagnosed with stage III ovarian at 35. That sucks.  But you look great.  How are you feeling now?  Just a little touch of compassion, something to humanize the encounter.  Nope.

Weeks and weeks went by, and I continued to be bothered by the lack of empathy which the genetics team demonstrated.  Mike and I did some role playing as I imagined how I might bring this up with them, given the opportunity.  Then, this past Monday, the call from the intern finally came, and following a day or two of phone tag, we spoke on Wednesday.  I went directly to Mike’s office after court that morning, so we could make the call together.  Even though I knew what the news would be, I didn’t want to be alone when I heard it.

So we got the intern on the speaker phone, and Mike sat quietly while I talked to her and she delivered the news.  (Really?  An intern?  Over the phone?  Come on, Penn GI Genetics, you can do better.)  I have the mutation, big surprise.  She asked me if I wanted to be part of the control group for some test that the genetics lab is doing; I politely declined.  It wasn’t quite the feeling of vertigo that overtook me when I was told I had cancer, but my mind did fog over until I heard her say, “Do you have any other questions?”

Here was my moment.  “Actually, I do.”  I looked at Mike, and watched his eyes get big. “When you meet with patients, are you allowed to ask them how they are doing?”

A long, confused silence followed. “Well, of course.  You know, of course we can…you mean, about any symptoms…?”

“No, no…,”  I interrupted.  “I mean, just in general, like how are you DOING?  Because not one of you did that with me.”

An even longer silence, this one of a more awkward variety.  “Oh, well, I…,”  she stammered.

I was gathering steam now, even as the lump in my throat grew and the tears welled up.  “You might want to think about what people have been through…because it’s a lot…and it’s not just about your charts and your graphs.”  Mike silently bounced out of his seat and mimed an emphatic one-two punch reminiscent of a baseball umpire ringing up a batter on strike three.  OK, so there weren’t really ever any graphs involved in the materials they reviewed with me during my “counseling” session, but I was feeling heated and I was trying to make a point.  I think the squirmy little intern caught my meaning.

She sputtered on helplessly for another moment or two until she finally regained a modicum of composure and said, “Is there anything else?”

“No, that’s it, thank you,” and Mike unceremoniously hit the receiver, effectively (I like to think) hanging up on her, delivering the final blow.

The emotions overtook me when the call was over, and I cried and shook with anger for a minute or two as Mike came over to wrap me in one of the best hugs he has ever given me.  He shared how proud he was of me, and I was proud of myself, too.  I can’t undo the cancer I’ve had, or the cancer I might get in the future, but I can at least stick it to the allegedly concerned medical professionals who are interested in seeing me live for a nice long time, regardless of my genes, when they fail to recognize the emotional and physical toll of this wretched disease.

The remainder of the week was busy – at work, and also in other parts of Cancerland.  A friend underwent surgery for an ALL recurrence on Friday, a day when I also learned that another friend was marking the tenth anniversary of her dad’s death from lymphoma. We also heard from a woman we met at a cancer couple’s retreat last Spring, whose partner died last month after a long battle with an especially rare and pernicious form of the disease.  So, just as I was confronted with confirmation that cancer  – or at least the prospect of cancer – is likely to be a part of my life for the rest of my days, I was reminded, so starkly, of the pervasiveness of this disease all around me. It never ceases to blow my mind.

So the week ended, and today I awoke on a cold, wet, miserable morning, and felt the sting of my latest cancer news just a bit more acutely than I did on Wednesday.  In the stillness of the gray weekend which lay before me, on a day when I won’t be able to run outside and feel the sun on my face and the wind rushing around me, I felt genuinely sad and scared.  How long until the next diagnosis?  How long until I am confronted with another somber-faced doctor telling me I have cancer again?  How many hours and days will I have to devote to tests and screenings, in the hope of catching the beast just as it awakes, rather than being subjected to frantic damage control after it has already feasted on my body?

When Fox broadcasts baseball games, one of their favorite, pesky graphics is something called the “RIGHT NOW!” box.  It shows you where the baserunners are, giving you an additional way to view the current situation on the field, to understand the scoring opportunity for the offense.  Mike and I often joke about the RIGHT NOW! box, about what a stupid and unnecessary feature it is.  But this morning, as I felt the darkness creeping in, and I fought to beat it back, I thought, maybe I need to be a little more focused on the RIGHT NOW! box, and a little less preoccupied with an uncertain future.  You may have someone warming up in the bullpen, in preparation for future peril or as a means of preserving a lead, but you can never, ever, take your eyes off of the opportunities immediately at hand.

So what about right now?  “Living in the moment” is a theme that those of us who have faced cancer are familiar with, a mantra that we repeat to ourselves as we fend off fears of recurrence.  So this is nothing new.  Still, this morning I realize with renewed purpose the need to live fully today.  Life is to be lived, and amazing things are happening all around me.  Next week, we go to settlement on our first house.  Soon, I will be building a garden in our new back yard.  My heart and legs will grow stronger as I run the trails of Cooper River Park in my new neighborhood.  Baseball starts.  Jazzfest beckons.  There are rocks to climb in Utah.  And somewhere, there is a child who needs a home who we will welcome into our family.

I recently reconnected with an old friend from New Orleans, who has chosen to remain there in that improbable city, in spite of the risks, because it is where his heart is.  As we exchanged messages, he offered his simple rationale for staying put, even after Katrina:  “You cannot live in fear.”

No, you can’t.  Fear of floods, or fear of cancer.  The readiness may be all, but life needs to be lived.  So let’s get busy.

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meet mike (he rocks)

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Some of you good folks who take the time to read my ramblings here know my husband, Mike.  Some of you don’t.  Regardless, it’s time to take a minute and tell the world why my husband is so amazing, and why I love him so much.

The basic, cancer-themed facts are simple:  when I was diagnosed in December, 2007, Mike never flinched.  (Well, maybe he did, but he was careful not to do it in front of me.)  He did everything you could expect a loving spouse to do when faced with a life crisis like cancer.  He never, ever once thought of running away – which, sadly, happens more often than I think most people realize when a partner faces a serious illness.  Not only did he stick by me through the worst of it; he helped give me the tools and support I needed in order to rebuild my life once I was well again.

But Mike’s exemplary performance during the course of my illness doesn’t even begin to tell the story.  Because I was lucky enough to find him, amidst the unpleasantness of law school, all those years ago, I had, when cancer struck, an unbelievably solid foundation in the most important relationship in my life.  We were ten years into our exhilarating – and yes, at times frustrating – dance together when I got sick, and there is no question that the strength of our love for each other is what gave me the determination to fight as hard as I did to keep on living.   

Mike is a Gemini, and though I am not prone to putting much stock in astrology, I have always loved his multi-faceted personality.  He is intense and extremely goofy; piercingly intelligent, but sometimes just a little bit wifty;  he has an astoundingly creative spirit, but is also immensely practical when faced with a challenge.  He is kind, but tough. 

These are just a few of the reasons why I fell in love with Mike so long ago, and why I continue to love and admire him just as much today as I did when we first got together for dinner and to play some Joni Mitchell songs that summer evening in 1997. 

It has been all too easy, in the aftermath of cancer, to focus obsessively on the things I have done to rebuild my physical and emotional health, and the vital, sustaining relationships I have formed with so many people (mostly other young survivors) through groups like First Descents and Planet Cancer.  Too often, I have gotten caught up in a refrain of ME, ME, ME.  For the reality is, none of what I have achieved, none of the strength I have regained, would be possible without Mike at my side.

To be perfectly clear:  the vitality, the positivity, the determination and the love – everything that I try to set down in these words, and to embody in my life – is borne of this precious bond that I share with my husband.  I owe so much to him, and I am so blessed to be continuing our adventure together.  May it go on and on and on…

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power trio (a brief ode to therapy)

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It’s just after nine PM on a school night, and on a normal evening, I would be headed for bed in a few minutes  – my early bedtimes a holdover from my treatment days.  But this is not a normal night, as after work hubby and I checked in with our therapist for our semi-irregular visit.

I HATE going to therapy.  HATE HATE HATE.  But I love our therapist, and I am always so glad when it is over – not just BECAUSE it is over, but because I usually come away feeling like I’ve had a vigorous workout.  Which, of course, I have – just emotional, rather than physical.

Mike and I have had a relationship with our therapist off and on for over eight years.  She knows the best and worst of us, and she practices her craft – a kind of sleight of hand, or black magic – with a seamlessness that is downright eerie at times.  We reconnected with her two years ago during my treatment (in hindsight, it’s amazing that we went as long as we did without seeing her after my diagnosis), and she has been a tremendous resource for us – together, as well as for me, individually  – ever since.

Neither of us wanted to go tonight.  We’d both had long days, and traffic was a nightmare. With another snowstorm coming, all I really wanted to do was go home, but on my PJ’s and curl up with a Bailey’s and hot chocolate.

But, as often happens during therapy, I found myself unburdened of emotions I hadn’t even been directly in touch with, and I walked out of the office feeling like I’d shed several pounds of psychic baggage.  In particular, what I was reminded of tonight  is that no matter how happy and strong and determined I feel most of the time, there is incredible value in just plugging in to the dark side and letting the bad feelings flow.  I don’t spend my days thinking about how my cancer has destroyed my marriage; most of the time, I feel like we are doing better than ever, whether in spite of or because of cancer.  We have faced incredible adversity, and we have done it together.  But tonight, I just had to get in touch with the fact that deep down, I sometimes feel like my illness has ruined the vision of life we had for ourselves.

Even more amazing, perhaps, than the relief I felt at expressing these irrational  – but understandable –  feelings, is the sublime dance that the three of us do together in that little office for 50 minutes.  Over beer and a deliciously unhealthy dinner afterwards this evening, I referred to us as a “power trio” – like, say, Cream.  Mike agrees that I am Eric Clapton, he is Jack Bruce and our therapist is Ginger Baker, holding it all together with her solid backbeat.  It’s hard work we do together, but we do rock very, very hard.

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love train

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Did my last post come across as, well, homicidal?  I didn’t mean for it to.  I’m peace-loving, really.  To clarify, the only machine gun I would ever wield is one loaded with words; language is my best defense, my greatest weapon.  Think of Woody Guthrie’s guitar (thanks, hubby, for the analogy.)  The world may be going crazy all around me, and evil may be rampant, but I am made of love, and words are my ammunition.

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Once again, First Descents to the rescue.  Could it be any other way?  Wednesday evening found me in a foul mood, as evidenced by my last post.  But by 2:15 on Thursday afternoon, I was boarding a train to DC, headed for another FD event.  18 hours   – and not a few huge laughs and cheap beers later  – I turned right around and went directly from 30th Street Station to my office.  Whiplash might be the best way to describe the feeling of being immersed in FD love –  basking in the warmth and positive energy that is generated whenever we all are met – to the often-prickly atmosphere of my workplace.

It took me over an hour to get my bearings and begin navigating a typical, vaguely chaotic Friday afternoon.  I could feel myself straining to adjust, as if my vital organs were being pulled from my body and replaced with those of a robot, or a zombie (do those guys even have vital organs?)  Then I realized:  I am the same person when I am walking the halls of my office as I am when I am climbing rocks or breaking bread with my FD family, or when I am chatting up prospective campers.  I am not required to absorb the agitation and toxicity which has been infecting my office in recent months; I am made of love!

So as I travelled the halls late in the day on Friday, distributing the mountains of files which have been stacked up in my office all week, I stopped and paid a visit to two of my favorite co-workers.  And I just told them, straight up, how awesome they are and how much I love them. They both responded with huge smiles, and thanks, and even gave me an opportunity to ramble on about FD for a minute.  “Why can’t everyone be mellow and happy and outdoorsy and into kayaking and rock-climbing?,” I asked them, rhetorically.  “Why is everyone in this place having a cow all the time?”  Just making that connection with these two wonderful women and spreading some love immediately lightened my mood and brightened my outlook.  And best of all, I think it made them feel good, too.

It may be a simple lesson, that the best way to combat negativity and bad energy is with positive vibes and boatloads of love.  But I think it’s something that’s easily forgotten. Perhaps it is the experience of facing my mortality and recognizing the preciousness of each moment that has reduced my tolerance for the kind of pettiness that marks so much of human interaction.  The love machine that is First Descents has re-enforced this idea:  why be cruel, or insensitive, or bitter, when you can have a dance party, or do donuts?

It’s not just about combating negativity, though:  it’s also about being open with the people who have done amazing things for me, or who otherwise inspire me.  So last night, I kept on riding the love train right to the 40th birthday celebration for my wonderful neighbor Iva.  I have mentioned Iva here and there in the past, but I want to take this moment and shine a very bright light on her incredible heart and spirit.

Iva is a mother of two little boys, and in addition to caring for them, works out of her home as an artist, yoga instructor and all-around ambassador of good will.  During my surgeries and treatment, Iva became my fairy godmother, my guardian angel.  Almost every morning, she would poke her head into our front window, and give a yell in to see what was going on that day.  Some days, I would hang out in her kitchen and help her put tags on the kids’ clothes which she designs and sells.  She would make me laugh and distract me when all I wanted to do was curl up in a ball and cry.

I remember one day in particular, toward the end of my treatment, when I was really coming unravelled.  There was an insane heat wave in early June, and only a few rooms in our house were air-conditioned with window units.  The heat was unbearable in combination with the chemo, and the weakness and fatigue were becoming overwhelming.  Iva called, or popped over, and I came to the door in tears, unending sobs.  There was so little of me left that I didn’t even know what I was saying; I barely even knew who I was talking to.

Iva immediately sprung into action.

She brought me next door to her house, and plopped me down on the couch in the comfort of their air-conditioning.  She brought me blankets and tea and I sat with her and her boys and watched videos of They Might be Giants singing Here Come the 123’s.  My distress was so profound that I continued to cry intermittently as we all sat there;  I was incapable of even being self-conscious about it.  Looking back, it felt like I was dying.  But Iva continued to minister to me, and make me laugh, never telling me to buck up or get a grip on myself.  She always just let me be as sad and as angry as I needed to, and was always ready with a hug and a smile.  Over those interminable months, she taught me how to play Suduko, gave me pointers on taking care of my garden and spent hours sitting on the front stoop with me, watching the neighborhood characters pass by.

My seven months of surgery and treatment were a nightmare in so many ways, a period of darkness that in hindsight I cannot believe I survived.  But those months of torment also gave me the gift of an incredible new friendship with Iva.

So last night, at Iva’s birthday celebration, after I had Mike snap our picture together, I just told her, right out, how much she had done for me during my illness, and how much I appreciated her.  We hugged and cried and just had this totally real, authentic moment; she expressed her happiness over my current good health, and reciprocated the love I was giving her.  It was a little unexpected, in the middle of a stuffy, dimly-lit bar with funk music blaring, but it felt so good to let someone who played such a huge role in my survival know just how much she had done for me.

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I can’t quite remember the person I was before cancer, but I don’t recall being so willing to let my guard down with people and express love and gratitude the way I have in recent days.

So, maybe there was something to be gained from my machine-gun fantasy after-all.  After diving deep into that pool of psychic darkness, I was able to break through the surface and take big, healing gulps of air, and feel the love that is abundant all around me.  More than that, though, I am recognizing what is to be gained by giving it back.

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on the clock, out of my mind

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Another day, another installment of cosmic absurdity.  A favorite expression of incredulity among some of my colleagues lately is to say, simply, with a little cock of the head, “REALLY?”  That about sums up how I am feeling today.

Tomorrow, when I am in court, all of the other dependency rooms are closed because most of the judges are off at a conference.  Judge O. and I, however, will be slogging away at 9 AM, reviewing the cases of the older youth who have grown up in foster care, whose parents are both dead, or who are so medically needy and whose families are so unable to care for them that they will spend their entire lives in an institution.  Fun stuff.

As if that weren’t enough, since none of the other courtrooms are running tomorrow, the team in our room will also be blessed with a giant stack of emergency petitions – always some of the best material in child welfare.  Like the 19 year old who gives birth to her fourth child while in prison.  Or the mom who runs through traffic with her six year old while high on “wet.”  (Still don’t quite know what that stuff is, but it sure seems to make people act craaaazy.)  Or how about the mom who drops her kid at a shelter and then just, you know, leaves?

After ten years in this field, these stories never cease to astound and horrify me.  But now, in my cancer-induced, barren state, they also make me insanely, insanely angry.

This is just one of those days.  And for sure it does not help that there was a baby shower in the office for one of my gazillion pregnant coworkers this afternoon – a scene I imagine repeating itself endlessly in the coming months, given the overwhelmingly fertile workforce we seem to have.

At the height of my agitation today, in an effort to channel some of my negative energy, I let my imagination run a bit wild.  My anger and frustration were starting to get the better of me, so I decided to get ridiculous.  I of course chose to step out and run some errands during the shower (depositing funds for the downpayment on our first house sure felt good, as did a trip to Aveda), but nonetheless, I imagined myself barging into the conference room, over-turning the table of food (covered, of course, in pink table cloth) and screaming at the top of my lungs, “NOT FOR NOTHING, I AM THRILLED FOR YOU AND ALL, BUT CAN’T YOU PLEASE HAVE YOUR FUCKING BABY SHOWER SOMEWHERE OTHER THAN MY OFFICE?!?!?!?!?!?!?!?”  (In the interest of full disclosure, I will admit that the original version of this fantasy also involved a machine gun, which I swear I would only fire at the ceiling.  The object of my rage is cancer, and what it has done to me, but I have this notion that doing an armed version of a Larry Bowa-style freak out would just be oh-so-satisfying.)

It’s not personal, and I don’t even know if people in my office wonder why it’s so hard for me to even be polite about the fact that every other woman I work with is getting ready to pop out  a baby.  I’ve always kept to myself at work, under the radar and above the fray, so perhaps my current behavior is construed as just more of the same.  In truth, I don’t really care.

There are a few other cancer warriors in my office, and I suspect they are the only ones who might even begin to understand what I am feeling.  Other than that, well, it just doesn’t matter to me.  It’s hard for me to recognize that I am being so selfish, and maybe even a little unkind, but I really don’t feel, after everything that cancer has put me through, that I should have to worry about office politics, or sitting through baby showers for people I am not even friends with, when I am on the clock, here to do a job.

And what a job it is.

Posted in Infertility, Life After Cancer, Work | Tagged , , , , , | 1 Comment

every picture tells a story: first descents, revisited

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Christmas came a little late today, in the form of over a hundred highly secret, much- anticipated photos from First Descents in Jackson, Wyoming.  Dear Hollywood, out there on the Left Coast, tormented us all last fall, refusing to share his photos as the rest of us did in a flurry of activity in the days and weeks immediately following camp.  Selfish bastard, I thought: why won’t he just share his fucking pictures like a NORMAL FD’er?

Then today, totally without warning, an avalanche of memories was unleashed when Hollywood finally – FINALLY, six months later – posted his photos for all the world to see.  And so now, as I sit with my evening cup of tea, I am filled with this incredibly warm feeling of love and comfort as I remember the magic that unfolded in Jackson.

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Scarcely a day goes by when I don’t give thanks for First Descents, and the miraculous way in which it jump-started my life as a survivor.  The experience I had has become such an essential, defining part of me, it’s as familiar as breathing.  But today, in addition to pouring through these amazing photographs, I also decided – in uncharacteristically spontaneous fashion – to head to Washington, DC on Thursday evening for an FD event.  How can I not?  Who cares if I have to dash to a train when I get out of court, and if I return to work on Friday mid-day horribly hungover?  I simply cannot resist the pull of this organization, what it means to me, the way it has touched the lives of so many young adults with cancer.

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The frustration I have at this moment, then, is that I once again am I left stumbling for the right words, the perfect tone, as I try and convey the mystery of what we all shared during that week in the mountains.  As I looked through the photos this evening, the memories were so fresh, I felt as though I could have climbed right into any one of those moments.  Over and over, images of us all embracing, smiling, connecting.  It’s palpable to me, but it’s something unseen, elusive.  Do I see it in our faces, in our body language, simply because I was there, because I lived it?  Or is it something that can be shared and felt by others?  I suspect we all probably struggle with these questions as we attempt to share what First Descents means to us.

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The pictures, I think, tell the story so much better than any words I could ever find.   For that reason, I am so thankful tonight for Hollywood, and the special gift which he has shared with us all.  I believe that all of us from Jackson, wherever we are tonight – around the country, and around the world – are feeling this indescribable connection renewed and re-invigorated.  I certainly feel re-born.

But words are my tools, the best ones I have, so I will keep trying, as well as I can, to keep the memories fresh and alive.  Painting with words, trying to fill in the spaces between those precious captured moments, to add just a bit more color and shading to those priceless images.

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(cancer) flash forward; (cancer) flash back

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On days when I am due for a check-up with my oncologist or some other cancer-related appointment, I have been known to do things like forget to pack my yoga pants for my acupuncture appointment after work. Yesterday, after getting hastily dressed for the gym at 5:30 AM and telling myself that I would remember to grab a sports bra drying on the clothes line in the basement, I found myself starting my run on the treadmill only to realize that I had not, in fact, remember to put on a bra.  (Definitely one of the stranger runs I’ve ever had, but I did manage to log 4.18 miles in spite of the bouncing boobs.  At 6 AM, I have to confess I don’t really give a shit if strangers at the gym are staring at my buoyant chest.)

This should not have come as such a terrible surprise, I guess, since yesterday was the day, after many long months of anticipation, that I was finally to meet with the genetics team at Penn and get tested for the HNPCC genetic mutation that both my mother and my Aunt Sally carry.  (Did I just violate HIPAA?  Sorry, guys!)  I had overcome the major hurdle of filling out all of the forms for the genetics program a few months back, and then waited and waited for a call to schedule an appointment.

So I finally did it.  Not only did I do it, but I did it on my own (despite my devoted husband’s repeated protestations that he would be happy to meet me at the appointment after wrapping up a work commitment.)  And for the most part, I kept my shit together.  Go me.

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The appointment itself was innocuous enough: any time I see a doctor and don’t have any of my orifices probed, it’s a good day.  I sat with a team of lovely young women (two genetic counselors – one of whom was an intern, and looked very much like my friend Slaps-o-lot from camp, which really helped keep me at ease, and one miscellaneous doctor, whose presence was never fully explained to me), and was walked through the a chart of my extended maternal family, showing all of the (numerous) incidents of cancers. They even took me back to 10th grade biology and showed me maps of chromosomes, and where the genetic mutation is located.  Super-cool, I guess, if you’re into that.

Later, after I had my blood drawn (some for the genetic test, some for research, since, why not do what I can to help other people who have this stupid syndrome get better care in the future?), I met with the head of the GI Department, a very congenial guy who said, in essence, “You’re going to test positive for the mutation, so here’s what we’d like you to do in terms of surveillance.  Because in the end, it’s all about preventive medicine.”  PREVENTIVE MEDICINE.  I really liked the sound of that – much better, in fact, than EARLY DETECTION.  I know it all amounts to the same thing, but the thought of PREVENTING me from getting more cancer as opposed to CATCHING IT EARLIER just had a nice, smiley ring to it.  Like taking echinachea and Vitamin C.

There were really just a few “little” things that unnerved me during the visit.  First, the genetic counselor telling me that the CA125 marker that I am tested for every three months doesn’t really tell us anything about whether or not there’s cancer in my body (Excuse me? I think I’ll let my treating oncologist make the call on that one.)  And second, when the doctor casually mentioned that, hypothetically, in the future, if benign polyps are found in my GI tract, they might recommend me for some “prophylactic surgery.” Grreeeeaaaaaaat.

But the bottom line is, I did it.  Almost twenty years after the first whispers of the fact that my sister and I might be at increased risk for cancer because all of this crazy family history, I finally sat down with a geneticist and got the straight scoop.  It’s time to put the surveillance program in place, starting with some butt and upper GI scopes this fall.  In truth, now that I am closing in on two years post-treatment for my ovarian cancer, I am grateful to have access to this team of folks who are working so hard to keep me in good health.

Ironically, it was my trip to the chemo suite at the Perelman Center for my regular port flush just before my genetics appointment that left me a bit rattled.  As I waited to board the bus to West Philly, I received a text message from one of my cancer peeps who just happened to be at the chemo suite for a treatment that afternoon. We’d never met in person, so I responded that I would stop by once I got there.

Normally, when I go for my port flush, I arrive just after 8 AM, when the nurses are getting set up and the first patients are just arriving.  Yesterday, though, in an effort to coordinate with my genetics appointment, I was there late in the late afternoon – when the rooms are mostly full, and folks are beginning to leave after finishing their treatments.

With skies darkening from the coming snowstorm, and thin, bald women plugged into IV’s populating all of the private rooms, the chemo suite took on a very different feel than it does on an average, sunny weekday morning.  I wound my way through the corridor, trying not to peer at the patients, and headed for room 10. Suddenly, in that moment, I saw what I must have looked like two years ago – pale, wasting away, afraid.

Two doors down from the room where I waited for my flush was my fellow ovarian warrior.  I knocked gently on the door, and poked my head around.  There she was – fighting Benadryl-induced drowsiness, fiddling with her phone, with her mother-in-law at her side, dutifully knitting, keeping watch over her loved one.  We chatted briefly, I excused myself for my flush (I was delighted to see my favorite chemo nurse, Annies), and then popped back in to say goodbye.  I could see her fighting to stay alert, the effort behind the smile.  She is a warrior, and I saw myself reflected in her.  It made me angry to see her going through this fight, but also proud to feel connected to her.

Yesterday, then, I realize that I was caught up between flashing forward, and flashing back.  I saw the patient I am now becoming – scanned and scoped and probed on a regular basis, in the hopes of avoiding future advanced cancers – and the patient that I was, fighting Stage III ovarian cancer, cut-up, plugged in, pumped with poison.  Drained of spirit, fighting for my life.

But look at me now.  Keeping up my running through the long, unexpectedly snowy winter months. Stronger, more fit than ever.  Focussed, positive, powerful.  It feels like some kind of miracle.

Posted in Family, Life After Cancer, Philadelphia, running | Tagged , , , , , , , , , , , , | 1 Comment

shine on

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When my husband and I moved into the house we have been renting for the last three and a half years, our heads promptly filled with visions of the happy life we would live here, even the family we would build here. I remember distinctly, in those early days, Mike saying, “I want to live here forever.”

Home ownership was always the goal, but even getting set up in a rented big, comfortable rowhouse in the city felt like a significant step toward realizing the fantasy we’d both long held about being fabulous city-dwellers.

Our neighbors on either side have small children, and as soon as I realized how cool all of the young parents on the block were, I imagined our own child one day playing with all the kids in the neighborhood, and I saw me and Mike finally becoming those hip urban parents we’d always imagined we’d be.

A little over a year after moving in, I was diagnosed with cancer, and everything was turned on its head.  During the seven months I was out of work, the house that I loved so much at the outset became the site of my incarceration, the place where I spent countless hours by myself – crying, doing crossword puzzles, reading, communing with my fellow patients on Planet Cancer.  The two flights of steep stairs became a form of torture.  The sounds of the neighborhood children coming home from school at the end of the day, playing in the street, laughing and shrieking, became a kind of mockery of everything that I had lost.

But there were some good things about the time I spent in this house during those long lonely months.  My neighbor Iva became my guardian angel of sorts, and I will always be grateful to her for everything she did for me, the patience and caring she showed while seeing me at my absolute, rock-bottom worst.  I also was able to spend long hours outside, in our small back garden, taking care of green things, nurturing life.  I found immense peace and comfort in the rituals of gardening.

So, needless to say, when I think about the time we have spent here, and as I contemplate this chapter of our lives coming to a close, my feelings are decidedly mixed.  Still, it took me a bit off guard when, this past Friday, I had what we like to call a “wicked bad panic attack” about leaving this house, and the city, and beginning the next chapter of our lives just across the Ben Franklin Bridge in the great state of New Jersey.

One thing we know very well in our family is that things often don’t turn out as we expect.  Control is an illusion.  Most of us are living at the mercy of forces we can neither see nor understand.  Nevertheless, packing up and leaving the city is a choice, even if it is one that is based in large part on practical (read: financial) considerations.  And on Friday, I was gripped with indecision about whether it’s the right choice.

Pull back the curtain a bit on Friday’s freakout, and discover, not surprisingly, that anger, sadness and disappointment stemming from cancer were right at the center of so much of what I was feeling.  Leaving the city feels like a failure of sorts, like we are giving up on the dream we always had of spending our lives in an urban environment, and when I think about packing up our stuff and moving from our perfect little block, I think about the dreams we had when we arrived here, and all of the ways in which cancer has fucked us over.

I know that it isn’t cancer’s fault that the price of real estate in our current neighborhood is so over-inflated, or that the Philadelphia public schools are an atrocity, or that we haven’t been able to save tons of cash for a giant downpayment.  But when I found myself losing my composure on Friday, it sure was easy to point the finger at my favorite, life-altering disease.

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Our plans for the weekend originally were to drive up to NYC, have a quick visit with my nephew and then slide over to Queens to hang out with some of our favorite cancer friends.  The blizzard of 2010 disrupted those plans.  So instead, we ended up spending most of last night and the first part of this morning playing and recording some music, a favorite old ritual in which I always find immense comfort.

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Music, as usual, proved to be a wonderful tonic to the anxiety and confusion that gripped me on Friday. Letting the notes ring out, letting the melody seep into me, proved cathartic, and cleansing.  Not coincidentally, perhaps, when I went for a run this morning, I imagined myself doing yoga on the deck of our new house, and pictured myself riding my bike around Cooper River.  Change is scary, and I will miss what we are leaving behind, but once again, I return to the lesson which cancer has taught us, over and over:  there’s nothing we can’t handle, and tomorrow is always a little brighter than today.

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running doesn’t cure cancer (but i’m going to run anyway)

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When cancer struck, I went from being fit and active (not obsessively so, but I biked with enthusiasm and hit the gym three or four times a week) to being completely inert.  Not just inert, but sliced, diced, poured out and pumped full of poison.  I lost fifteen pounds;  I was weak.  Fifteen minute walks with the dog were the extent of my physical activity for many long months.  Climbing the stairs in my house was often a heart-breaking exercise.

After I finished treatment, in June of 2008, I wanted nothing more than to resume my pre-cancer level of activity, but my body was nowhere near ready.  Instead, it demanded continued rest.  Over time, it become a vicious cycle of sorts – the longer I went without physical activity and told myself, “I just need a little bit longer.  I’m almost ready,” the harder it was to find the motivation and courage to just start DOING.

In September of 2008, I remember being out with my dog (oh wait!  I was exercising!) when I got a phone call from my Aunt Sally – a cancer survivor several times over and a fierce, relentless athlete.  We were talking about exercise, and I explained my plight.  I was afraid, I told her.  I was afraid to even try, to face my limits.  I imagined going to the gym by myself and having a panic attack as I fumbled with the machines, being gripped with the vertigo brought on by the neuropathy in my feet.

Sally, while totally sympathetic, gave me the gentle kick in the pants that I needed.  “You have to start somewhere,” she told me.  “It’s okay to start small, but you really ought to give it a try.  You’ll feel better once you get started.”

And so it began.  The next day, I laced up my sneakers and headed to the gym, and began my long journey back to fitness.

I did indeed start small – on the treadmill, walking fast, running for a few minutes at a stretch.  I remember when I was first able to run a full mile, it felt like a victory of Olympic proportions.

Running, more than any other form of exercise, became suddenly, vitally important.  Post-treatment, one of my greatest struggles was (and to a certain extent remains) the discomfort and pain associated with peripheral neuropathy in my feet and calves.  Oddly, the neuropathy didn’t really come on in full force until after I finished chemo, which made it that much more aggravating.  Treatment may have been over, but months later I continued to feel its ravages every day, with every step I took.  Running, thanks to the neuropathy, was harder and more challenging than anything else I could put my body through.  For that very reason, it was a challenge I was determined to take on.

I have made monumental progress since that first epic mile almost a year and a half ago.  In May of 2009, I ran my first 5K – huffing and puffing, having to stop and walk a few times, and clocking in at about a 12 minute mile.  But crossing that finish line was one of my greatest personal victories ever.

Less than a year since that 5K, I am closing in on 10K, and have picked up my pace to an almost respectable 10+ minute mile.  I have been running religiously, every other day when possible, and each time I set out, I seek to push myself a little bit farther, and hopefully, run a little bit faster.

Last week, though, I felt myself pushing up against my limits in a way that was uncomfortable rather than motivating.  I was out in the evening after work, on my usual route along Delaware Avenue, and I realized I was struggling.  For the first time in ages, I had to stop and walk for a few seconds, to catch my breath and rest my legs.  It was disappointing and frustrating, but after walking for a few moments, I gathered up my strength and pushed on. Recognizing that I wasn’t operating on a full tank, I trimmed my distance down by about a half-mile.  I still felt accomplished at the end of my run, but something continued to gnaw at me.

This past Sunday morning, while it was bitterly cold outside, I ran inside on the treadmill, and found myself hampered by stiffness in my legs, and discomfort in my feet.  I wanted to push myself, and tried to for a bit, but soon realized I needed to dial it down, pull back and rely on what an old yoga teacher used to call the 70 percent rule – exert only up to 70 percent, always leaving something in reserve.

And so this morning, I gave myself permission to tone it down:  You don’t have to top yourself every time you run. The realization struck:  I don’t have to beat cancer every time I put on my running shoes; I already did.  And just because I don’t run a quarter mile farther each time I go out doesn’t mean my cancer is going to come back.

That’s right:  running doesn’t cure cancer, or prevent recurrence.  It might not even help me lose some of this menopausal weight I’ve been caryying around.  But what it does do is give me an incredible sense of fulfillment, strength and positivity.  It’s something that seems so impossible, so hard, and yet I am able, somehow, to do it every time I set out.  As my sister said recently, it’s not about the distance, it’s about the perseverance.

This morning, when I started out on the treadmill, my legs were stiff and painful.  When I finished, and realized that I’d clocked a pretty sluggish pace, I was upset.  I felt like my body was rebelling, as if I suddenly had reached my limit with this endeavor, like I will never be able to run that half-marathon, or even 10K, that I have been so gleefully anticipating these past few months.  I felt like cancer was winning again by taking so much from me, physically, even now, a year and a half after finishing treatment.

But it isn’t.  I won’t let it.  My legs may not be steel springs, and I may not be fast as a leopard, but I am running with every ounce of determination that I have.

Posted in Family, Life After Cancer, running | Tagged , , , , , , , , , , , , , , , , | 1 Comment