A Cancer Patient’s Evolution From Surrender to Survivor

By Jason Sheeler, The Dallas Morning News

Apr. 1–Loose change is so annoying,” I thought, focusing on anything but the present.

I lay inert, terrified to move, my body unnaturally reclined at a 45-degree angle in the hospital bed. But my mind raced, keeping pace with the soft-footed ICU nurses attaching sticky pulse-keeping things all over my body. I clamped my eyes shut, every light, noise and heartbeat feeling like a slap to the nickel-size hematoma I woke up with that morning — intra-cranial blah-blah-blah. The rancid smell of hospital hygiene, like expired chardonnay, and my mother’s muffled and panicked voice would not let me forget where I was. Today would be rough, I knew, with or without the lovely IV painkillers.

No one was saying what everyone was thinking: My 29-year-old body was not producing blood platelets. My body rejected platelet transfusions. I was bleeding in my brain.

My bone marrow was 4 months old, transplanted from an unknown donor in September to battle myelodysplastic syndrome, a rare blood disorder sometimes known as “pre-leukemia.” Four rounds of high-intensity chemotherapy had left me 30 pounds lighter. I swallowed 42 pills a day. And I had spent every minute of the last 11 months fearing this part of the hospital. I was filled with hate.

“Pompous know-it-alls,” I thought, watching the doctor furiously scribbling something important, robotic nurses fluttering around him. “All the lab coats and Land Rovers and mandated sincerity. Just drop it and tell me what’s going to happen. Tell me I am going to die.”

I tried to think of pleasant things, such as what my funeral would be like. I had told my friends I wanted an a cappella choir to perform Leonard Cohen’s “Hallelujah,” followed by Jennifer Lopez’s “Love Don’t Cost a Thing.” I smiled at the thought of my mother’s face when, per my explicit stage directions, the singers in the chorus fling off their breakaway robes to reveal a pastel palette of Juicy Couture sweat suits as they sing J.Lo’s gospel: “Think I wanna drive your Benz, I don’t.”

The hollow screech of a flat-lining patient elevated my blood pressure and sent the flock of silent scrubs away in unison, like startled pigeons.

I exhaled slowly, my cheeks full of dry, recycled air. “Well, that sucks.”

The first signs

Exactly 11 months before, I was living in Little Rock, Ark., and celebrating Valentine’s Day with friends. After a raucous night, I woke up with a hangover I didn’t recognize. And I had met them all.

I went to the doctor Monday, after sleeping 40 of 48 hours. It was bizarre. I was almost gelatinous. After being sent home with antibiotics and an unnecessary prescription for heartburn that I still can’t explain, I went back to bed. Later, I received a call: Get to the hospital.

The doctor may have been a Nexium pusher, but he did a blood test. The results were startling. My blood count was at 6, meaning I had less than half the amount of blood found in healthy men — not that I was ever one of those.

Anyone who knew me in the ’90s will be curious to see my name under the banner “Healthy Living.” My barometer for health was always my waistline, with its number in direct proportion to my well-being. If it was 31 inches or less, I was doing something right, I surmised.

In the summer of 2002, while living in New York, my energy level plummeted. My gums started to bleed spontaneously. Illness was taking hold. But I had a 30-inch waist.

On Feb. 19, 2003, at the same Little Rock hospital where I was born, I was told I had MDS. My bone marrow was not producing enough blood — red blood cells, white blood cells and platelets. The treatment would be chemotherapy, and the only hope for a cure would be a bone marrow transplant. What I took away from that day, other than the punched looks on my parents’ faces and the doctor’s confusing illustrations on the dry-erase board, was that about one in three patients with MDS develops acute myelogenous leukemia. Nice.

When I found out about my cancer, my first reaction was embarrassment. “Cool people don’t have cancer,” I thought. I was ashamed, humiliated and felt immediately left out. My friends were still living, I thought, and I, suddenly and irrevocably, was not. I had this disease that seems to occur in people older than 60. I begged my parents not to tell anyone, fearing my picture would end up on coffee cans at service stations. I left the hospital, made reservations at my favorite restaurant, picked up two bottles of Veuve Clicquot and toasted my fate with friends who didn’t know why we were toasting. I smoked, I drank and I gave up.

Plea for help

But my parents weren’t ready to quit. Two things happened for which I credit my life.

First, ignoring my pleas for isolation and anonymity, my father asked for help. While I received crocheted caps and creepy drawings from Sunday school children (including a Matisse-looking graveyard scene with angels flying above), I also found a great doctor. A family friend connected us with Dr. Kari Nadeau at Stanford University Medical Center. She became a mentor of sorts, advising us on doctors and procedures. It was her advice that I must get the very best treatment from the start. And that meant going to the University of Texas MD Anderson Cancer Center in Houston.

Second, my mother got organized. She tackled the situation with her Type-A tenacity; the house my parents rented in Houston during the two years we spent there was wallpapered with charts, its bookshelves stuffed with notebooks chronicling every medication and procedure. Cancer is a full-time job for both the patient and the caregiver.

After three rounds of chemotherapy, my cancer was in remission, but with the caveat that it probably would return. The race was on to find a bone marrow donor.

Waiting is the worst side effect of cancer treatment, and it hurt. My tolerance for physical pain grew. The stomach problems, the headaches, even the biopsies, with a 16-gauge needle hammering into my pelvis, extracting marrow and bone; it all became routine. I learned to deal with physical pain. I could understand it. It was finite.

The abstraction of emotional pain kept me suffocated. And the lag time left me with more opportunities to ask, “What if?”

Hospitals are bureaucratic dinosaurs, with office procedures that can rival a post office’s expediency. The outer rooms are filled with patients one-upping each other with “you’ll never believe this” stories, each educating the other on newer and more insane things that may happen.

Due to my increasingly terminal uniqueness, finding a bone marrow donor was a struggle. I had “difficult typing,” they told me, with one antigen not found commonly in the Caucasian population. Most whites will find 40 to 50 matches from the National Bone Marrow registry, with those with the most common genotyping finding up to 7,000. My brother was not a match, either. And, after not finding a match in the U.S. registry of more than 7 million donors, and a private search of my friends, family and anyone meeting my mother, the search was expanded internationally.

Good news. A match was found. Great news. It was a perfect match.

Risky business

Even a perfect match is not without risks. For seven days, my bone marrow was decimated by high-intensity chemotherapy, after which my donor’s marrow would be transfused intravenously. On Sept. 25, 2003, the bone marrow and blood mixture entered my veins to, we hoped, settle into my bones. Then, another wait: My body would decide whether to accept or decline my one shot at life. Each day, we hoped that the donor marrow would begin to produce cells.

I spent 27 days in the hospital, celebrating both the birth of my new DNA and my 29th birthday. A month later, my platelets disappeared. And, for the first time, the cold percentages with which doctors speak entered the “D” range.

Idiopathic thrombo- cytopenic purpura is a condition of low platelets with no known cause. The condition was unrelated to my transplant, just an annoyingly uncommon situation. I knew things were bad when my hospital room became the first stop for visiting oncologists.

Back in the ICU in January 2004, the hematoma disappeared after eight days. My intestines continued to slowly bleed, my platelets stayed away, and the doctors continued to answer my yes or no questions with statistics and words with too many consonants. Experimental medicines, nuclear imaging and daily plasma exchanges were my life for the next 15 months.

My health insurance ran out, leaving me on Medicare and tripling my family’s paperwork. Steroids added more than 50 pounds to my frame. One of the experimental medicines destroyed the nerves in my feet. I began to fall — at the hospital, at home and, embarrassingly, twice into a sale rack at the Gap — and so did my percentages of surviving.

I was ready to die. The idea seemed like a welcome change of pace.

In early 2005, I sought the advice of a platelet specialist in New York. It was her opinion that my spleen was the cause of the ITP. In March, with no cells to clot my blood, I underwent a splenectomy. Almost immediately, my platelets returned. But my desire to live did not.

When I woke up in the recovery room, I learned that everything was great, normal — I was officially a survivor. Whether I liked it or not.

Moving on

The sleek architecture of the Texas Medical Center complex in Houston slid past my cab window last month, the buildings and streets neatly labeled with the names of the rich and the dead. It’s almost perverse, the gorgeous facades hiding gruesome acts happening 24 hours a day.

As I entered the outpatient clinic at MD Anderson, I moved from present to past. The hurried lobby has the feel of an airport, everyone going in different directions with different connections, with different fates awaiting at their gate.

I think about the first time I was here. The resentment I felt, not wanting to be one of those people, masked and hairless with gray skin, frail and contorted bodies hiding behind tubes and blankets. The misery of the intravenous catheter stitched to my chest, a constant reminder of my illness, a source of infection and an obstacle to showering. That bitterness grew each day, with my entire fate hanging on black Courier-font numbers. The terrifying platelet count of zero adjacent to the boldface “normal averages.”

Walking through the front doors, five years after diagnosis, I saw many ghosts: the nurses I disrespected with my anger and bitterness while living as only the dying can; the transplantation coordinator who worked tirelessly to find me a donor while I didn’t even bother to show up for appointments; my doctor, who saved the life that I didn’t even want.

“You have been through war, and, along with that, can come post-traumatic stress,” Dr. Borje Andersson told me as we discussed the complications of ITP. “No one can recall seeing a patient like you. Everyone just shakes their head. This was fairly unique, to put it mildly.”

“Yes, it was bad,” he said. “In more than 20 years, I have only seen one other person survive a bleed of the brain in your condition.” But the recovery “was not my doing. It was divine.”

I was gob-stopped when hearing his words, that a man of science, with a handful of degrees and the almighty lab coat, would tell me that my fate was ordained by a power greater than him.

It rolled over me. The uncommon cancer, the rare genotype, the one donor, the successful match, the hematoma, the dicey splenectomy.

And then, it happened: I was grateful. Leonard Cohen’s words rolled through my head: And every breath we drew was Hallelujah.

“Your prognosis now should be as good as any 33-year-old man who is basically otherwise healthy, who has not had a transplant,” Dr. Andersson said, asking to see me again in September, which will be my fifth bone marrow birthday.

Before I left MD Anderson, I filled out a form asking to meet my donor. A cold, impersonal form with boxes for how much information to disclose to this person who gave me not only his DNA, but life.

The process is a little like Internet dating, with both parties having to agree to meet, a third party facilitating the communication. Once again, I’m waiting, but not worried. I think it will be a good match.

Jason Sheeler is a staff writer who covers style.

JASON’S TIMELINE

February 2003: Diagnosed with myelodysplastic syndrome at 28, began receiving regular blood and platelet transfusions

March-May 2003: Began chemotherapy at MD Anderson Cancer Center in Houston. The first round was not successful, but, by the third round, the cancer was in remission. The search for a donor began.

August 2003: Bone marrow donor found through the National Bone Marrow Donor Program’s Bone Marrow Donors Worldwide

September 2003: Bone marrow transplant

November 2003: Idiopathic thrombocytopenic purpura discovered, platelet level dropped

January 2004: Intracranial hematoma found

February 2004-March 2005: Daily visits to clinic for plasma exchanges and blood transfusions

January 2005: Met with platelet specialist (Dr. Henny H. Billett, director, Clinical Hematology, Albert Einstein College of Medicine in New York City, who specializes in platelet disorders). She recommended a splenectomy.

March 2005: Spleen removed and platelet level returned to normal

Today: Continuing biannual checkups at MD Anderson. The doctors are focusing on complications in transplant patients that can affect the eyes, skin and gut.

How to help

The National Bone Marrow Donor Program has access to nearly 7 million donors that may reach the more than 10,000 Americans who need bone marrow transplants each year. With only 30 percent of patients finding a match in their family, most will need an unrelated transplant donor.

Joining the registry is easy and relatively painless. Most people ages 18 to 60 are eligible. The program will send a tissue-typing kit to your home for a tax-deductible fee of $52. After submitting a swab of blood, you will be typed and added to the system. Keeping your contact information updated is crucial.

Minority donors are in demand. Because genetic traits are inherited, a patient’s most likely match is someone of the same heritage. Recruitment is focused on American Indian, black, Latino, Asian and Pacific Islander donors.

If you are matched with a patient, you will be asked to become a donor. Under anesthesia, a small portion of your bone marrow will be extracted, leaving your back sore for a few days. Your body replaces the lost bone marrow in four to six weeks.

For details or to order a tissue-typing kit, call 1-800-627-7692 or see www.marrow.org.

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