Hi, Tony! Stories Podcast

As most people know, cancer and chemo come with a lot of fatigue, and they have stolen my energy to tell the stories of others as I usually do on this website. But they've given me a story of my own to tell, in small installments, about cancer and some of the surprises it's given me.
I'm not exactly happy I got this disease, you understand, but it does have its gifts.
I hope you'll find the following "Chemo Chronicle" worth reading; I hope it will prompt stories of your own. I'll be sure to share them here, and to keep this Chronicle going as long as I feel I have something to say.
Today I am a sponge. In goes the needle, out come two vials of my blood for blood tests. Half an hour after she carries the tubes to the lab, a nurse named Ann returns to my treatment room with an armful of chemicals whipped up specially for me, every drop of which will go back up my arm. We check the names on the clear plastic bags of chemo against my hospital ID bracelet, the standard procedure for making sure the right chemo goes to the right cancer patient. One of the chemicals is ruby red, the color of a tangy Mexican fruit drink called jamaica I used to love as a child. It's a relatively new drug, derived from mouse anti-bodies and must be introduced ver-r-r-ry slowly to ward against a bad reaction. A mouse, for God's sake. Okay, it's a mouse and I'm a wounded elephant.
Some of the chemicals I will absorb in the next five or six hours weren't intended for cancer. One of them comes from a search for a cure for genital herpes, another from research into cluster headaches. Seen from a distance, cancer research is a smooth and deliberate stream of clinical tests and trials. Close up, it is a camel bazaar of sheer serendipity—"Abdul, over here! I've got something for that head cold of yours, comes from a lamb kebob my wife just made. You gotta try it. Dries your sinuses like a sandstorm!"
From nine in the morning till four-thirty in the afternoon I watch several pounds of miracle fluids flow into me, colored raspberry, ginger-lemon and clear. Before I got cancer I used to think of my innards as dark as a cave, my thoughts evolving in sightless murk, my cells moving and dividing in blackness, my heart pumping blood as black as pitch. Thanks to the MRIs and CAT scans, blood tests, lymph and bone marrow biopsies of the past few weeks that led to my diagnosis, though, I have seen pieces of me glowing on a television screen or floating in clear fluid in sample bottles held up by happy nurses. Now I think of myself inside as bright-pink.
At the beginning of all this, hobbled by the grinding pain in my legs and gut as the growing tumors pressed down on my nerves, the oxycodone my doctor had prescribed was my only source of relief and its effect was lessening with every day. My response to pain generally is to ignore my distress and pretend there's nothing wrong. It's a bad habit I picked up from childhood that for a very long time served me well: a thin crust of cool over a deep core of scared. That's how I'd walked into the oncologist's office for the first time a week ago to get my diagnosis. He told me that I had Non-Hodgkin's Follicular Lymphoma B, Stage 3.5, a rampant but treatable disease. In the best of all possible outcomes, after six three-week courses of chemo the cancer would go into remission. "And if it doesn't?" I asked him. He hedged a reply, so I tried again. "If I walked out of your office right now to live alone in the woods, how much time would I have?" He said "Optimistically . . . six months." That was the moment, I think, the crust broke and for an instant I felt a chill of stainless steel up and down my spine. On my way out, the doctor said he'd also need a bone marrow biopsy. "Take a day off if you want," he said, "I can do it tomorrow." "No," I said, "Right now." It's the only medical procedure I've experienced so far I have no wish to recall. Weird is too short a word.
Compared to those first few weeks of diagnostic tests and advancing pain, chemo is a pleasure. I'm lying on the treatment table, cuddled by oxycodone, watching the slowly shrinking bags of chemo over my head and thinking about the immediate future. I've been told to expect the Three Horsemen of cancer treatment—nausea, hair loss and fatigue. Of the three the only one I dread is the first. Ever since I was a kid, the rockiest part of any illness was the struggle to keep from throwing up. To me the need to vomit seemed worse than death, a complete surrender of self-control to a force that wanted to expel all the things stuffed inside me much too awful to feel.
I smile up from the table at my wife Harriet and my son, Andrew, who, so far, have accompanied me to every appointment. They are my emotional support and my short-term memory. 60-80% of everything the doctor or nurse tells me I can’t remember or am too anxious to understand. The sentences coming out of their mouths seem twice as long as the space between my ears, one end pushing out as the other end pushes in.
Joining us from Brooklyn, New York are Mark and Sheri, two of my oldest friends. Sheri boarded the SS Cancer a few weeks before I did with a quarter-sized lump in her lung from a lifetime of smoking. Two or three weeks after she got her diagnosis, though, the tumor was removed with no further need for chemo or radiation. Her only side effect, now she’s recovering from surgery, is her edgy struggle with sobriety, the hunger for a smoke every minute she's awake. There's something forthright and relaxed about the way she speaks about cancer, a sense of familiarity with it, an understanding that my illness is not her fault or her problem to solve. I like that. Her honest acknowledgment of my situation feels like real human companionship, which right now I need most of all.
People often speak of cancer as an enemy, a foreign body to beat down and destroy. I'm not questioning the metaphor, but to me this illness feels more like a struggle to keep my head clear of panic and an opportunity to get as close to others as I can. Disease isn't an alien invasion but a part of my story, a story that, if I tell it truly, might bring me some understanding and peace.
People come and go through the day, entering my treatment room with a smile or leaving to answer their cellphones in the corridor. For all I know, once outside my room, they could be riding that amazing instrument on another planet. The iPhone in my own jacket pocket, now hanging from the treatment room door, could be my own passport to anywhere, tying me a distant friend, to the answer to any question I could think of, to a shot of my house from outer space, to news from any neighborhood or nation, to any book in the history of words I want to buy, read or peruse online. With it I could even play with time, leaving myself an email for when I get home not to forget something I just remembered I need to do tomorrow. But the connections, all of them, seem evanescent, a fruitless attempt to stop the power and press of life at the flesh.
I remember a visit I paid Mark in Brooklyn almost eight years ago. It was a few a days after 9-11 and we took the subway from his home on Park Slope to as close as we could come to the spot they were calling Ground Zero. During that first week after the collapse of the Twin Towers, huge crowds came to stand around the mountain of crunched concrete, twisted metal and black threads of rising smoke. You could see it in every face, we were a single organism, staring at the world's largest open grave and bound by a common shock and grief. As Mark and I walked away, barely breaking the silence that went on for blocks and blocks, we got to Battery Park. A huge generator was roaring away, providing emergency electricity to some of the buildings nearby, when suddenly a human voice broke through that was ten times more jarring—a man yammering at someone on his cellphone. Maybe it was a vital call, maybe, he was responding to an emergency at the end of his line as huge as the disaster at our feet. But his ability to exist in a world apart from our own tore a gaping hole in the safety and sureness of our common grief.
Nurse Ann returns every twenty minutes to see how the infusion is going and take my vital signs. Each new bolus or push of chemo—my own regime, called R-CHOP, requires five—calls for a change of bags and sometimes of dress. For one of the final infusions, Nurse Ann adds purple gloves and a light blue antiseptic plastic frock over her hospital green scrubs as she sits by the side of my bed, administering the ruby red chemical and looking like a little swallow of Capistrano. I already love her. A gentle woman with a soft voice and trusting manner, she has the rare and healing gift of making me feel I'm doing something kind for her, too. I'm glad to know she'll be with me for the whole six rounds of treatment and try to remember not to monopolize her time: while she has given me the impression she has all the time in the world for me, she has probably conveyed the same impossible reassurance to her three other patients in their treatment rooms at the same time.
Around 1 pm two elderly gentlemen in identical pink blazers, pink cheeks, and heads of shocking white hair push a cart by my room full of sandwiches, mock-wood plastic bowls of salad and canned drinks. Given the town we're in, they must be Boston Brahmins from Beacon Hill, born into old Yankee families that made their money in the China trade and, for generations, eased their consciences and road to heaven with public service. These two (brothers? lovers? cousins? age-old friends?) have volunteered to serve as waiters, offering a complimentary four-course lunch of a salad, a sandwich, a drink and dessert for chemo patients and their guests. To my surprise I have an appetite, so in go a tuna salad sandwich, a bowl of some sort of pale pudding, a bag of chips and a can of orange juice. The sponge absorbs it all.
The main treatment office is on the 8th floor of the Yawkey Building at the Massachusetts General Hospital, or MGH as they call it. Outside the windows a view of Boston's government center and back bay glows brick orange and red. The writer John Updike, who died of cancer less than a month ago, received treatment at the Yawkey Center and I wonder if he too had stopped to admire the view softening into dusk as I do now. Behind me in the waiting room the tall bottle of hard candies at the check-in counter has been re-filled, the staff welcomes late-callers with a smile, and in a few of the two dozen comfortable chairs some patients and their companions calmly wait for their appointment, with only the flash of a white plastic ID bracelet to tell them apart.
We leave them as we head back home, down the elevators to the main entrance and the basement-level parking lot, my son pushing me in a wheelchair all the way. Restored to my bedroom where I have already spent a week weary and in pain, I slowly undress and get into my pajamas. The oxycodone has worn off by now, but the crushing pain in my legs seems almost gone.

Maybe I'll worry about it tomorrow but for now, and for the first time in weeks, I can feel my body unclench. I lie down, feel Harriet's arms close around me, and close my eyes.
(Interlude)
Harriet and I wake from a deep sleep with no idea of the time. Only the darkness outside the window tells us a few hours and not an entire day have passed since we got back home. A good thing; we still have work to do. At the treatment center Nurse Ann had brought me all the pills I needed and made sure I swallowed them as she watched. But now, it's up to us to manage a continuing flood of medications. Ten bottles of variously colored and sized pills from our local pharmacy lie between us on the bed. Pills to boost my energy, pills to control or eliminate nausea, pills to shore up my immune system, antibiotics for the precipitous drop in white blood cell counts that will come about seven days into the cycle (a time, I'm told, when even a distant sneeze can threaten infection). And not a doctor or nurse in sight to hold our hands.
My oncologist's office has supplied us with a dozen stapled sheets of paper describing each of my medications in turn, their dosages, their brand and generic names, their specific moves and killing power on the chessboard of cancer. They read like a short, proud history of man's assault on cancer, and its principal tactic—targeting your body with just enough poison and precision to kill your cancer without obliterating the rest of you. What these tacticians have overlooked is that in this war my wife and I are not trained troops but scared civilians. I can't handle the big picture or a global strategy. I can barely tell the pills apart.
I shut down and Harriet goes into hyperdrive. Certain she's been left with sole responsibility for keeping me alive, she reads and rereads every tear sheet, terrified she'll give me all the wrong pills or watch all the right ones leap from her shaking hands down the toilet. Deprived of common sense, we scream at each other like babies in parallel panics, not playing well at all.

We hang up, take a deep breath, and Harriet hands me a glass of water, and the first salvo of pills to swallow.
Hours later, with Harriet once again asleep beside me, I look through the bedroom curtains at the night sky, waiting to get drowsy, thinking how hard it is to keep it simple, and yet how sweetly, when it settles, simplicity can cover the chaos and show me some stars.
Saturday, March 28, 2009
Remission: Day 1
Here's me, back at home in bed after my first treatment in the hospital.