01 Dec My Cancer Diary, Volume IV
Dear Friends and Family,
Waves of wind, rain, and Arctic chill have passed through Brooklyn in recent weeks and the leaves are finally off the giant maple tree that shades our tiny backyard. With the shortened days and vagaries of a brownstone heating, we now face the riddle of winter: the branches are bare outside our windows but more light makes it into our home.
One morning recently I found myself making a series of lists. The first covered all the parts of my body that ached or pained or had something wrong with them. I got so overwhelmed I stopped counting at thirty. The second list mentioned all the times I had cried in the previous few weeks. This tally included a few pieces of bummer news, at least one occasion of self-pity, a bout of agony at the pain I was causing my family, and a tearful bit of anticipation at receiving a friend’s news that she was cancer-free after five years. The final list counted all the places I would rather have been that day. This list was rather long.
It was my birthday. I was in the hospital.
As feared, the last few months have been challenging. I passed into the belly of the chemo colossus and experienced many of its most ferocious side-effects. First, I got an ear infection, followed by pneumonia, and had to forego several weeks of treatment. Then, twice in the span of three weeks I was hospitalized on five-minutes notice – once for elevated methotrexate toxicity in my kidneys; the second when my white- and red-blood counts fell to near-zero, and I had no effective immune system.
My doctors considered these developments routine and were not particularly alarmed, but they are evidence that the regimen, as promised, is taking its cumulative toll and making my body weaker. Also, the physical and emotional challenges of spending four days in a hospital cancer ward all twisted up in IV cords and pumped up on steroids are considerable. At one point I wrote Linda: “It’s so much worse than anyone will ever know.”
Still, I managed to pass through this unpleasantness and am excited to be nearing the end of the four-plus months of pre-operative chemotherapy. My doctors are giving me several weeks off to regain my strength, before the surgery happens in late December. At the moment, Dr. Healey is planning a fairly innovative, sci-fi procedure. He will cut out the eight-or-so inches of my left femur that houses the primary tumor, then replace it with a titanium prosthesis. He will also remove the parts of my thigh muscle that have been corroded by the cancer.
A plastic surgeon, Dr. Bebak Mehrara, will then remove most of my left fibula, which we’re told is an extraneous bone that doesn’t need replacing. He’ll graft the fibula to the healthy parts of my left femur; then screw it to the prosthesis. He’ll then reconnect the fibula’s blood vessels to those in my upper leg. The idea is to take the inorganic object – the titanium – and fuse it with an organic object – the fibula – to make the resulting construct as strong as possible. To give you an idea how rare this is: Dr. Healey told us he has only done this procedure twice. But for what it’s worth: One was on the special teams coach of the Jets, and as those in the New York area know, Gang Green’s special teams have done quite well this year!
Following the surgery, I’ll face several weeks of intensive, in-patient recuperation before being thrust almost immediately back into post-operative chemo that should last another three months. At that point, with my body likely depleted and my mobility impaired, I’ll begin physical therapy. As I’ve been referring to all this since July, I’m looking at The Lost Year.
So how are you holding up? I’m wobbly, at best. A few times in recent weeks, as I passed through rocky moments, I’ve wondered whether there is some correlation between cellular weakness and emotional sensitivity. The feebler I get the more acutely I feel the pain, especially emotionally. When my mother-in-law called me one night in the hospital a few weeks back and told me she thought the girls were suffering in my absence, I put down the phone and bellowed into my hands. There’s a reason a primal scream is called a primal scream. Some fears are primordial.
Still, for the most part, we continue to take the hits, adjust our sights, and alter our expectations. Linda, in particular, has felt squeezed at times by having a husband in a hospital room across the river and two three-year-olds at home. She cancelled her trips abroad, held conference calls from her cell-phone in the chemo clinic, and struggled with my sometimes stoic silence.
The issue of how much discomfort to share with her and others who are already overburdened by caring for me has been a puzzle. One night Linda lay down on our bed and announced I simply had to share more of my struggle with her. I told her I was only keeping quiet to protect her, but when she insisted, I promptly unloaded my catalogue of minor ailments and anxieties. She became so rattled she didn’t sleep for two days. Stoicism does have its virtues.
But a few of the dates that meant the most to me this fall did occur during “up days” in my treatment. Foremost among these was Linda’s annual fund-raising gala for Endeavor. The event, which raises money for Linda’s pioneering work supporting high-impact entrepreneurs in emerging countries, is like having a wedding plopped down in the middle of our lives every year: Black tie, five hundred people, seating charts, sensitive egos, and high-stakes toasts.
To add to the pressure, I was hospitalized as late as 72 hours before the event. But at the last hour my bone marrow rallied, and, in one of the few benefits of having lost so much weight, I was able to tuck myself into my wedding tux at the weight for which it was originally tailored. I even ditched my crutches for the night and strutted through my responsibilities as Endeavor’s First Man. As Linda radiantly spoke of her organization’s amazing accomplishments this year, and as Endeavor’s chairman, Edgar Bronfman, Jr., paid tribute to her incredible hard work even during her personal struggle, I was hardly the only person raining tears in the room.
For all the joy of this event, some warning signs did emerge for future years – and I’m not referring to fund-raising. I’m referring to fashion. We have a category of marital accessory in our household that if I felt I had any standing at all as a relationship guru, I would recommend for all successful marriages, and that is: The Gala Dress, otherwise known as The Thing About Which I Don’t Ask – Where It Came From, What It Looks Like, How Much It Cost.
I’ve been quite proud of my hands-off attitude over the years, but this year I realized I might have to change my policy. The girls were quite excited by all the effort put into mommy’s appearance, and managed to get their own nails done, too, at The Dashing Diva up the street. They were even jazzed to see Daddy in his “tup-xedo.” But as I was leaving for the event, they announced: “Next year we’re going to get Gala Dresses, too!” Uh-oh. The Domino Theory is back – and this time it seems to be working.
The big picture. As you can see, cancer is not linear. Our lives rock unaccountably – and unpredictably – among moments of hardship, stress, joy, pride, laughter, and exhaustion. There is profundity to explore, but also laundry to do. Someone asked me recently whether the “up days” of chemo, following the “down days,” suddenly seem beautiful and full of hope. Maybe, but I’m usually too busy unclogging the sink.
In that regard, we are very grateful for the many hours, afternoons, and weekends that our families and friends have spent helping us endure, and enjoy, this time. A special thank you to the Class of 1983 at the Savannah Country Day School for taking time out of our reunion to send such robust best wishes. And our warmest embrace to all those who have sent nourishment, diversion, cards, and prayers. We have composed thank-you notes many times over in our heads. Please bear with our bad manners and know that we feel your support.
After five months, I have (mostly) accepted that I cannot anticipate or design how I will feel on any given day. One of my mottoes has become: “No excuses. No apologies. No planning.” If someone makes me a giant bowl of chicken soup with matzah balls and I have a sudden craving for marinated artichokes and Milk Duds, I go with my craving. If someone flies in from Kazakhstan and cancels a lunch date with Mayor Bloomberg to come for a visit and I need a nap, I take the nap. I only wish selfishness was more fun!
As we head into the holiday season, the one list we know that is longer than ever is the one that contains all the things for which we are thankful. And if we’ve learned anything during this process, it’s to take a moment to share that list with those who are on it. Recently I was speaking to a friend who had lost her father before her first birthday. The one thing she most missed from her father, she told me, were letters directly from him. My friend’s older sister had received some, but she had not, because she was only a baby. Every year, my friend shared with me, she took time to write a letter directly to each of her children telling them how much she loved them.
I can think of no better holiday wish from us to you. So in this season of anxiety and hope, may your home be filled with health, your lists with joy, and your letters with love.
And please, take a walk for me.