story and illustrations by Ian McDowell
I’m not the sort of atheist who refuses to say grace or throws a hissy fit about crèches on municipal property. That’s why I didn’t mind when Bishop took my hand and prayed for me. Of course, I was still in shock. I had just learned that I might have leukemia.
Near the end of my work shift on the Friday before Labor Day 2013, my doctor called to say my blood tests suggested the dreaded L-word. He wanted me to go to the Cancer Center at Baptist Hospital in Winston-Salem for confirmation and potential treatment. He’d already made my appointment for the coming Tuesday, but told me to go earlier and check myself into the ER if I started feeling noticeably worse.
I didn’t know how I felt. I can’t remember feeling or knowing or thinking much of anything except getting through the next hour. It’s hard to imagine a better excuse for going home early, but I didn’t want to leave my co-worker by himself. Or maybe I didn’t want to leave me by myself, which is what I would be at home. I thought about taking a short break, but it was easier to deal with the people in front of me than what my thoughts would be if I stopped looking at them.
One of those people was Bishop; we called him that because he actually was one.. I must have looked upset, or at least stressed, because Bishop asked me what the matter was. I told him, because I was still processing it. It never occurred to me not to. He reached across the counter where I worked, took my hand and asked me to join him in prayer. Despite my atheism, it seemed ungracious to refuse. I even repeated the words “Jesus” and “Amen.” This didn’t make me feel better or worse, but after that little prayer session the rest of the customers, who’d been acting testy about standing so long in line, became more patient and solicitous without actually asking me any annoying questions. That’s one of leukemia’s silver linings. People are generally nicer to you.
When my shift ended I called my manager and said I wouldn’t be coming in on Sunday or Tuesday and possibly not for quite some time after that. I went home and for the rest of the holiday weekend didn’t go anywhere or do anything special, but read or watched movies, or tried to. One friend took me out for a meal and others came by to visit. They kept reassuring me, as did other friends on Facebook, that I hadn’t been diagnosed yet, that the upcoming bone-marrow biopsy might show that I didn’t have leukemia after all. I’d experienced what proved to be a false leukemia scare earlier in the year and this might be another one. Despite the reassurances, it was hard to enjoy the holiday.
On, Tuesday, Sept. 2, my friend Dave Taylor drove me to the Baptist Cancer Center. They put me in a nice, spacious, private room with an excellent view and introduced me to the medical team, who stuck a needle in my back and withdrew fluid and a tiny bone fragment and promised results very soon. I don’t remember if my friend Christine had arrived by the time I’d been told I did indeed have the disease that killed my mother, but I recall her hugging me tightly and telling me she loved me, and me crying and her trying not to.
Some science: Acute myeloid leukemia is a cancer of the myeloid line of blood cells. Generally, leukemia is either myeloid and originates in the blood, or lymphoid, originating in the lymph glands. Mine created malignant leukocytes, abnormal white cells, that accumulated in my bone marrow and interfered with my immune system rather than strengthening it, the way normal ones do.
AML causes a drop in red blood cells, platelets, and normal white blood cells, resulting in shortness of breath, fatigue, easy bruising and bleeding, and increased risk of infection. It was actually the latter that my mother succumbed to, as she seemed to have beaten it when the pneumonia set in. Its specific causes remain unclear. As an acute leukemia, AML progresses rapidly and is usually fatal within weeks or months if left untreated.
I’ve read that while it’s the most common acute leukemia affecting adults, it’s also relatively rare, accounting for approximately just 1.2 percent of cancer deaths in the United States.
The word was coined by 19th Century pathologist Rudolf Virchow, who in 1845 observed abnormal white blood cells in a patient’s sample. He called the condition leukämie in German, forming the neologism from the Greek leukos and aima, or “white” and “blood.” In modern popular culture it’s the heir to consumption (aka tuberculosis), the disease of haggard poets and beautiful but doomed young women in 19th Century romantic literature.
After my mother’s death, my father hated leukemia’s portrayal in the media, particularly the film Love Story, in which Ali MacGraw contracts a photogenic illness that, in the words of writer Harlan Ellison, “smites but does not wither.” My mother, who was prettier than MacGraw, certainly withered, although I wasn’t allowed to see the worst of it.
Which brings me to a more personal history.
My mother died when she was 40 and I was 6. I suppose that’s when I stopped believing in God, although there’s some question as to whether or not I’d ever properly started. We were always an uncommonly secular household in the South of the 1960s and my parents rarely attended church. My father once told me that, before he realized he was agnostic, he’d wanted to enter the seminary, but his priest told him, “Don, I fear you’re more in love with the theater of the office than Our Lord Jesus Christ.”
Dad almost became a professional actor, and later in life he was an amateur one heavily involved with the Fort Bragg Playhouse and the Fayetteville Little Theatre. He once told me hated the idea of a “personal” relationship with God and said that if he was to be a believer, he’d have to be either be Catholic, Jewish or High Church Episcopal, some creed with a proper sense of ceremonial dramaturgy.
“I’d want to go visit God in His house, not have him just pop into mine,” he’d say.
Mom was nominally a Quaker, which meant to some other Southern denominations she barely qualified as being a Christian. Probably to appease other relatives, she sent me to Sunday School, but I came out of it with such a vague understanding that whenever I heard the name of God’s only begotten son, I imagined not the robed, brown-haired Anglo-Saxon of traditional iconography, but the tiny plastic medicine man in my Marx cowboys-and-Indians playset. I have no idea why; my parents were sophisticated and unconventional but not into Native American or any other kind of non-traditional, white, American spirituality. From a very early age, I’d experienced extremely random mental pictures when I encountered words I hadn’t heard spoken at home, and for some reason this new name “Jesus” conjured up an image of a guy in a furry hat with horns on it.
My mother was from Greensboro. Sarah Frances Barnes graduated from Guilford College and earned her masters in library sciences from UNCG back when it was still called Womens College. I’m chagrinned to admit that I never asked my father, who was from Kentucky, how they met. He didn’t like talking about his first wife, but when he was dying complained that I seldom asked him about her. Wherever it was, they ended up in Madison, Wis., but moved to Fayetteville when I was barely 1 year old.
Whenever I tell anyone that I grew up in Fayette-Nam, they assume there was a military connection, but no, Dad was a deejay and she’d been hired as head reference librarian there; ours was a two-job family.
She was a beautiful bohemian, possibly a beatnik chick, with dark, pageboy hair, a sharp face and horn-rimmed glasses, slightly older than Dad but looked younger. She loved James Baldwin and John Donne and classic children’s literature. She read me Kipling’s The Jungle Books (which is why I still hate what Disney did to them) and had started on The Lord of the Rings, a chapter at each bedtime, by the time she got sick. Dad, taking over with The Two Towers, asked me what had happened to Gandalf, who’d been alive the last time he’d heard my mother reading the novel to me.
I’d heard other stories where people died, but it had always happened before the story properly began, or at the very end, or to somebody I didn’t care about. This taught me that a crucial character in a narrative could just drop out of it, leaving behind an emotional hole where he or she had been.
I never heard the word “leukemia” until after my mother was dead. I knew she was sick but was told she’d get better, and each trip to Duke Hospital seemed a fun outing. I remember my last visit, the first and only time I noticed her physical appearance had deteriorated.
I sat on the bed with her and we leafed through a hardcover collection of Charles Addams’ New Yorker cartoons that she’d ordered for me when she still worked at the library and it took months to get books through the mail. We turned the page to one of Addams’ most famous drawings, even though it didn’t feature his signature family of ghouls. Two unicorns on a rock, about to be engulfed by the rising flood, as Noah’s Ark sails away in the distance. I asked her to explain the joke. She said the unicorns had missed the ark. I asked her if this was true. She asked me if I meant was the story of the flood true, or did the unicorns really drown?
“Both,” I said.
She told me that both the Bible and this cartoon told stories, and that she liked the unicorn one because it was sad, like “Puff the Magic Dragon.” I asked if stories were lies. She said that good stories were never lies, regardless of whether or not they were true. I asked if the Bible was true and she said something like, “If I answer that, you might say stuff that will get you in trouble in school. Let’s talk about the unicorns instead.”
We did and then she hugged me. Dad had told me not to hug her too hard, that the medicine made her hurt, but this time, which was the last time, she hugged me hard and fierce.
Forty-four years later, cancer also got my father, although it was in his kidneys, not his blood. I never got a last hug; it happened so fast that by the time I got there, he’d gone from the hospice to the funeral home. For a while last year and this one, in what seems like both a moment and an eternity since my father’s death in November 2008, I thought it might get me, too. It still might.
It hasn’t been as bad for me as it was for either of my parents. Not that my first and longest period of hospitalization, when I would spend a week having my bone marrow destroyed by chemotherapy, followed by a week of recovery and transfusions, until six total weeks had passed, was a happy, fun time. One early sign was what I called “zombie tongue,” as its surface looked grey and rotting, which turned into bleeding mouth sores that made eating painful. Even the particles of ice in smoothies caused agony. My hair fell out and I suffered from dizzy spells and vomiting. Upon my release from the hospital in October, I was so cadaverous and pale that for Halloween I dressed as Count Orlock, Max Schreck’s vampire from the silent horror classic Nosferatu.
My initial six-week hospitalization, called the “induction phase” of chemotherapy, was followed by three shorter consolidation phases. In these, I would get six days of a more concentrated poison cocktail, then be released so that I could spend the next six weeks recuperating at home, waiting for my blood-cell counts to rise enough to safely undergo the process again. This lasted from the last three months of 2013 and through the first four of 2014. When I wasn’t at Baptist, I went to the Cone Cancer Center at Wesley Long twice a week for bloodwork. Sometimes this was just a quick jab in the lab and I could go back home before lunch. Sometimes I required transfusions and would be there all day. There were varying degrees of fatigue and vertigo, and in late January I got an infection that sent me to Wesley Long for 15 days. In the ICU, I thought I was Batman being tortured by Egghead — oddly, not the Joker; maybe it was because I liked Vincent Price so much as a kid.
Things are better now. My treatment ended in April. After my cell counts returned to normal, a bone-marrow biopsy found no unidentified floating objects in my blood. My labs are now once a month rather than twice weekly. My first benchmark will be in August 2015, twenty-three months after my initial diagnosis. Good lab reports will indicate a positive prognosis. People who go five years without a relapse of AML are considered to have a high chance of being cured.
I’ve said this wasn’t my first leukemia scare. December 2012 was the Worst Christmas Ever. Right before that holiday, I went to my doctor’s office with flu-like symptoms. His PA wrote a prescription for Azithromycim, aka Zithromax, a drug that some studies suggest can cause kidney failure, especially when the recipient is dehydrated. The next day, I couldn’t pee. I called my friend Doc, a former paramedic and current respiratory therapist, who said “Get your ass to the ER right now or you’ll die.”
They stuck a catheter up my penis and I was never so relieved as when the thick yellow pee finally appeared in the tube. This meant I didn’t need dialysis and would probably get better. Two weeks later, they let me go home.
In February 2013, I started feeling bad again. No problems peeing, but major fatigue. My doctor diagnosed me as anemic and sent me to Cone Hospital for transfusions, then to Dr. James Grandfortuna, a great hematologist at Wesley Long. Both my doctor and Grandfortuna suspected leukemia, although they didn’t tell me that until later, when we all thought I was out of danger. But there was no trace of cancer in my bone-marrow biopsy. Dr. Grandfortuna guessed the anemia might be an after-effect of the massive shock my system had taken and that my levels should eventually go back up. Sure enough they did; the fatigue went away and I was pronounced healthy and able to return to work. That was in April of last year.
Things were fine for a while and I knew I’d had a close call; whatever the cause, the kidney thing could have killed me. I was happy and healthy and feeling good, regularly riding my bike to destinations miles away and walking that far, too. I put back only 20 of the 50 pounds I’d lost and was the same weight I’d been when I was 30. I looked good, albeit no longer a decade younger than my real age. Women told me I was handsome and I could feel my libido, which had been absent, coming back. Life seemed just fine, thank you very much, and I wasn’t scared anymore.
And then I started getting sick again. No problem peeing and I didn’t change color, but I woke up one day with the zombie tongue. The doctor ruled out strep and thrush and when I started feeling worse, diagnosed me as having bronchitis, for which I was prescribed further meds. Soon I no longer had the energy to do anything on weekends. My mouth seemed to be getting better but my body was feeling worse. My doctor ordered additional bloodwork, took the results home with him and called my hematologist that night so they could go over them together. They agreed that signs pointed to leukemia, but it would take a bone-marrow biopsy to be sure. This time, they didn’t schedule one here in town, but immediately booked me for the Wake Baptist Cancer Center, one of the best in the nation. Hence the phone call I received that fateful Friday afternoon at work, my initial shock, and Bishop’s prayers.
It was a double whammy. I thought I’d dodged the bullet that killed my mother, only to find it had ricocheted. To this day, there’s no apparent connection between my leukemia and my earlier illness of December 2012-January 2013. If it had been leukemia that made me anemic and fatigued for several months that spring, I would be probably be dead by now.
Despite the absurd axiom that there are no atheists in foxholes, this hasn’t made me any more religious than I was before, although I continue to appreciate it when people pray for me. I doubt I’d devote much time to praying for myself even if I believed, as my interpretation of Scripture agrees with that of my friend Greg, who wrote on Facebook, “That’s not what the incarnation is about. The belief that Jesus will intervene in creation in order to make your physical life happier is the kind of debased Protestantism that makes us Catholics (even ex-ones) crazy.”
It did make me more conscious than ever of not having any surviving family.— or none that I’ve kept up with. I still have cousins on my mother’s side here in Greensboro, but I only knew their parents, including my great-uncle whose old poultry farm at the corner of Friendly and Holden,— now a house rented to Guilford College students —earned him the nickname “Chicken Man,” and his wife and two more great-aunts, all of them dead now. I’ve no excuse for not having kept up with their surviving younger relations; it’s just something that happened. Maybe I’m too much like my father, who became estranged from his own family when he didn’t visit my grandmother while she was dying or go to her funeral in 1992.
Yet I’ve also become aware that I do have a family of sorts in friends like Christine, Anne, Cavin, Sunshine, Ellie, Dan, Doc, Rebecca, Tim, Dave, Emily, Sarah, Marcie and others too numerous to mention here.
I’ve had three online fundraisers and one benefit show at the Blind Tiger (thank you Cabell, Debbie and Christine for making that happen), and that’s also reminded me of how many people care about me, even as I also appear to have lost a couple of friends due to my condition.
I’ll admit to being skeptical when some people I love try to convince me of things that don’t seem supported by empirical data or peer review, such as claims that root canals cause cancer (I had one in 2013) or that you can cure leukemia by eating salads. I recently discussed this with another friend who’s a beautiful Turkish robot scientist, by which I mean that she works with robots, not that she is one (although if she was, I for one would welcome our cybernetic overlords). She has her own grave illness and keeps getting unwanted suggestions from people with more faith in alternative medicine than she or I have. We decided that people have an understandable desire to blame calamity on one simple cause, and that idea that we’re subject to the vagaries of chance and genetics is scary. She reminded me that our friends wouldn’t suggest cures we find unconvincing if they didn’t love us.
We haven’t really discussed anything more serious than that (although loving and being loved by others is always serious stuff, maybe the most serious stuff there is). Her own intimations of mortality haven’t brought her any closer to Allah than mine have delivered me into the bosom of Jesus. Nor do we look to any life or consciousness beyond this brief one.
“Is that all there is?” asked Jerry Leiber and Mike Stoller in a song made famous by Peggy Lee. They weren’t asking us, but my friend and I would have the same answer. Yes, that’s all, just this.
What’s my prognosis? Like all of us, I’m going to die, but the hope is that it will be later than sooner. I mostly feel fine these days. I will be going back to work almost a year after I was diagnosed with AML. I’ve benefitted from so-called Obamacare, as my employer-provided insurance ended once I’d been out for four months. In previous years I would have been unable to get new insurance with this pre-existing condition, but I found a provider at healthcare.gov for $19 a month. In retrospect, I should have chosen the $55-a-month Blue Cross option, as Coventry can be difficult, but they’ve been paying for my meds and, after a $2,000 out-of-pocket, for 80 percent of hospital bills incurred in February and March. Because of the portion they don’t pay, my bills remain greater than the total amount my fundraisers took in and I may have to take a medical bankruptcy, but between those fundraisers and disability I’ve stayed ahead on rent and utilities and food.
AML is generally considered to have a 25 percent survival rate in its first five years, but my hematologist says that due to age and my genetic makeup, my chances are more like 50 percent. Whatever the odds, either I’ll continue to be cancer free or I won’t.
Sometimes I’m scared, but often I’m not. Sometimes it’s timor mortis conturbat me — “The fear of death disturbs me,” a phrase common in late Medieval Scots and English poetry. Sometimes it’s F*** That S***. You’re welcome to pray for me, but if you suggest I brought this on myself by not believing (or worse, that my parents brought on their own illnesses and mine by raising me without religion), you and I are going to have a problem. Fortunately, only a minority of believers think disease is punitive. I take comfort in no thought of anything beyond the living now, in those I know whom I love and who love me back, and I can offer no grand conclusions or homilies.
For as long as I can remember, I’ve known that life is a terminal condition.