01 Oct My Cancer Diary, Volume III
Dear Friends and Family,
Even as summer drifted from view, September was the most beautiful month we have seen for some time in Brooklyn, with bright skies, clear nights, and just a hint of coolness in the air. We are beginning to get whiffs of fall and the outbreak of pumpkins and spray-on cobwebs that mark the arrival of Halloween, a national holiday in kid-friendly Brooklyn Heights.
A few weeks ago my parents and in-laws arrived to help celebrate Linda’s significant birthday. (“Mommy’s turning forty!” Tybee announced to everyone who would listen.) The day corresponded with the beginning of round three of my chemotherapy. I stayed in bed all day so I could rouse enough energy to sit upright for a few hours that night in a restaurant. After the meal I crutched my way to the bathroom and asked the waiter to stick a candle in a chocolate cake for Linda. When the cake arrived with no candle, I nearly lunged at the man, who apologized and returned moments later with a solo scoop of lemon verbena sorbet with a single candle perched on top. Linda held her breath and prepared to blow, and for the first time I can ever remember, none of us wondered what she was wishing for.
We were all wishing for the same thing.
Three months have passed since I first learned I have bone cancer, and our lives for the moment have settled into a new normal. I have been through three of the four rounds of Cisplatin and Adriamycin I am slated to get before the surgery. While each time I get knocked out for about ten days, we have all somehow managed to adjust to the discomfort, exhaustion, and dislocation. The early signs suggest these treatments may be having a positive effect. My tumor has shrunk by about one-third; some of the warning levels in my blood have returned to near-normal; I have more mobility. As my otherwise circumspect oncologist reported, “You’re kicking this tumor’s butt.” And my surgeon observed, “Only green flags, no yellow or red.”
Having said that, both of my doctors have prepared me for the reality that my body will probably not bounce back quite as well from future treatments, that a host of complications still linger at every turn, and that the surgery itself will take quite a toll. But in the meantime, they are happily adding a third, more toxic drug to my regimen. This month I will begin four rounds of high-dose Methotrexate. (Query: Why do chemo drugs all have names that sound like comic-book villains? Now that the evil, octo-armed Cisplatin has been felled, here comes the dastardly Methotrexate to threaten Gotham City…) Methotrexate is given in weekly doses, not tri-weekly, so we’re bracing for a relentless few months in advance of the surgery.
So what’s it like around there? A challenge. I’m skinnier than at any time since our wedding. I’m bald. I’m on crutches. A cold I caught this week lasted three times longer than it normally would have. Just the other night I lay awake in bed, muttering to myself, “Nothing good ever happens to me anymore.” Later, I had a dream in which I imagined life around my home after I had died and was no longer living here. It ended with me walking into my office and seeing photos of someone else’s children on my desk. I screamed a deep-throated scream and woke up.
We have been struck that our situation raises one unfamiliar challenge. We are at an age when many of our friends are dealing with the issues surrounding aging parents. As unpleasant as these issues are, most of us know we will face them – and know many who already have. But when the person getting sick has four living parents, as I do (counting mine and my in-laws), the illness overturns the natural order of life. Few of us have the emotional vocabulary to deal with this reality, especially when those parents move back in for a while.
More than once I have scowled at my mother for treating me like a child or suddenly prying too deeply into my bowel movements or sex life. (No, I didn’t check whether Cisplatin could be countervailed by Viagra, but thanks for asking.) I growled when my mother-in-law called an an air-conditioning repairman for our guestroom, when the device just wasn’t turned on. If nothing else, we need our parents now, and we are grateful for the disruption they are causing to their own lives to help us – and our daughters – thrive. But setting new rules has been trying.
As for Linda, her life can be pretty crummy these days – from daily insurance battles to a perpetual slog through hospital waiting rooms to a husband who barely looks up from his pillow. I spend a lot of time staring into space. Linda keeps saying, “I’m so sorry this is happening to you” or “You don’t deserve this,” but I don’t often find it comforting. One night recently I was performing my grim bedtime ritual: Putting down my crutches, pulling my pants and underwear down to my ankles, sitting down gingerly on the bed, pulling my pants and underwear up over my right foot, then, after lifting my left leg carefully with two hands, kicking them off my left. I then repeat the entire exercise in reverse with my pajamas, a humiliating routine that has now added nearly a full minute of stomach-wrenching indignity to the simplest of everyday tasks.
Observing the look on my face, Linda asked, innocently, caringly, “What’s wrong?”
“My life sucks, that’s what’s wrong,” I snapped. I instantly felt miserable. I took her in my arms and kissed her. “I’m ruining your life,” I said. “I feel so bad.”
Even with all this agony, Linda managed to find some joy in recent weeks. She helped our girls have a wonderful summer, including time with the Rottenbergs on Cape Cod and the Feilers on Tybee Island. Her friends showered her with cupcakes and massages for her birthday. And though it will be taxing on us, I am excited that Linda is scheduled to make brief trips to California, Argentina, and Dubai in the coming months.
The girls, meanwhile, are doing great. A few blips aside, Tybee and Eden are sprouting with maturity and showing fewer signs of stress. They were gleeful at learning to swim by themselves at the beach this August. They daily prance around belting their new theme song, from The Sound of Music: “I am sixteen going on seventeen … Totally unprepared am I / To face a world of men.” And they are so consumed by reading that they regularly correct our spelling.
We had a moment of crisis a few weeks back when during a regularly scheduled tea party, a friend asked our darling Purplicious (Eden) and Pinkalicious (Tybee) what their favorite colors were. Eden, per years of preference, said “purple and rainbow.” Then Tybee, overturning equal years of pink intransigence, also said “purple and rainbow.” For a second time stopped, the heavens parted, and it was one of those moments as in the Book of Joshua when God seemed on the verge of hurling the planets toward Earth. We all felt as if we were witnessing a once-in-a-lifetime alteration, like the changing of the Coke formula or the fall of the Berlin Wall. Linda was ready to cheer this sign of growing up, but Daddy quickly stepped in. “Mommy has already bought you a college tuition worth of pink sweaters, coats, mittens, and snowsuits. I’ll be darned if you’ll wear anything but pink until spring.” The Old World Order was quickly restored.
So what’s the big picture? After months of living with cancer, I still find it easier to be at home rather than venture too far into the world. Here everybody knows I’m sick, and it’s safer. Often when I’m driving down a busy street and looking out at all the pedestrians, I think to myself, “That person doesn’t have cancer. That person doesn’t either.” Seeing other people walk without thinking can bring on a surge of sadness – or anger. “Do you know how lucky you are?!” I want to shout. As someone said to me recently, “We all have a gun pointing at our heads; it’s just easy to forget.” This year, at least, we won’t forget.
Still, the many emails, letters, and gestures we have received from far and wide have reminded us that we are not alone, and that even as we all hurry down the avenues of our own lives, there are many invisible eyes looking out for us and prepared to hurl a few planets our way if the need arises.
Thank you for being a part of that, and if these letters have caused you to pause even for a few minutes in a busy day, perhaps you’ll consider some of the gestures that have brought meaning to our family. Write a Friday missive to forgotten friend. Reach out to someone you kissed – or kissed off – long ago. Remember a forgotten wish.
Or, take a walk for me.