Confessions of a Bone Marrow Donor.
I thought the docs were just being creepy, but there it is, snuck in after all the nice images of abundance, plenty, gathering, ripening, karma…and bone marrow donation. Well, let’s perform the last rites for what was, until now, a perfectly good word.
“You’re being ‘tested’, ‘poked’ and ‘harvested’?” my friend Marcy noted. “That’s not bone marrow, that’s an alien abduction.”
My mom has leukemia. In leukemia the white blood cells take over and become a lawless, marauding outlaw gang. The mild-mannered red blood cells don’t have a chance.
Zapping it with chemo worked for a year, then the leukemia returned. A search ensued for a bone marrow donor. It turned out to be me.
Our story unfolds at John’s Hopkins Hospital in Baltimore, Maryland, an hour from my parents’ home in Virginia. It’s a massive labyrinth encompassing many urban city blocks. Luckily my hotel’s shuttle bus driver could interpret strange destinations: “Weinberg, please.”
I went to Hopkins first for a pile of tests to make sure all systems were go. The “Harvest” would be a second trip. I had never spent any time in a hospital before, and I was steeped in anxiety and dread.
I had an itinerary of my upcoming activities. The first morning, my instructions foretold of a blood test first thing, aka “Diagnostic Lab Studies”, and the strange, sinister directive: “You must eat a good breakfast and drink plenty of fluids.”
You know how tattooed people are always saying how they don’t care that you’re NOT tattooed? I’m right there with breakfast. You love breakfast, and that is great, but I, myself, do not love breakfast. There is only one good way to eat breakfast. It’s called brunch. Timing is of the essence.
Now, before you think I’m insulting your faith, you should know that I spent ten LONG years with one of your cult’s most devout devotees. So I keep my distance from oatmeal ogres, omelet officers, pancake Puritans, waffle weasels, smoothie sharks, cereal control freaks and other hijackers of the morning peace.
These instructions were, in short, an act of war.
So I endured some breakfast: a Clif bar, a carrot, and some juice. Fully 300% more breakfast than I would ever have.
I got there and after some sitting around was summoned to the back. A glamorous young woman was waiting for me with a huge pile of glass tubes with colorful labels. I hoped she was just, you know, conveniently displaying her supplies. Keeping them where they could be handily accessed throughout the course of a long day. But they were all for me.
As a former professional Lunatic Gardener, I take great pleasure in the fact that I can now cultivate and paint my fingernails. On this particular day mine were metallic blue. The Blood Taker’s nails were painted an opaque pale green.
It was the day after St. Patrick’s Day, and I’m Irish. Penalty! Score: Green Nails 1, Erika 0.
Not everyone, I have learned, draws your blood the same way. It’s unfortunate that Green Nails was first, and a sadist. “Did you eat?” she asked. I told her what I had to eat. “That’s it?” she said.
Of course I blame what ensued on her technique, more than on any deficit of waffles: stabbing pain, accompanied by a massive head rush. I closed my eyes and tried to do some deep yoga breathing. “Do you pass out, Honey?” Green Nails asked.
“I don’t know,” I said. But I didn’t.
Fell’s Point, Baltimore
Ten days later the inside of that elbow stayed bright yellow, in an obvious ploy to convert Blue to Green. I went to art school, see, and I’m hip to these tricks.
Art by Paul Darmafall, “The Baltimore Glassman”
After that I had a physical exam with a very nice doctor. She looked in my ears and down my throat and listened to my heartbeat. I fully expected her to bap on my knees with a little triangular mallet to test my reflexes, it’s been that long since I’ve had a physical.
She was kind enough to prescribe some anti-anxiety medicine, Atavan. Now I have awesome dreams where I correctly answer riddles presented to me in underground caverns that look like dorm rooms.
Then I went for a chest X-ray with a gentle, soft-spoken man. He had an African accent that was soothing to the ear. I asked if I could take a picture of the X-ray. “I’ve never been in a hospital before, I’m a tourist,” I explained.
“Healthy,” he corrected.
Next stop, I was chatting with the woman checking me in for my EKG. She was dazzled by my Enhanced Driver’s License with its fancy holograms. I’m kind of a big deal.
“EKG, are you ready for that?” she asked, looking concerned.
“Should I be?’
“Very painful,” she said somberly.
“REALLY?” I screamed.
“Naw, just kidding,” she said.
Indeed, it was nothing. They stick tape on your ankles and chest, then stick on these roach-clip-looking electrodes and you’re done.
Art by Paul Darmafall, “The Baltimore Glassman”
In the course of wandering around Johns Hopkins, I could see that they had a very cool art collection. My favorite pieces were by Paul Darmafall, “The Baltimore Glassman,” a diagnosed schizophrenic who, inspired by the Bicentennial, began working with broken glass, glitter and glue to express the “evils of electricity, taxes and air conditioning.”
Art by Paul Darmafall, “the Baltimore Glassman”.
Another day, another blood test, another “be sure to have a good breakfast.” Sigh. I had a muffin, an orange, some juice AND a bacon, egg and cheese sandwich. It was terrifying.
The objective was to draw a pint of blood to have in reserve in case I needed it after the Harvest. The woman doing this test was middle-aged and sassy, named Pat. I liked her. She asked if I’d had breakfast. “YES, it was horrible, I never eat breakfast,” I said.
“Well, you don’t give a pint of blood every morning, do ya?” she asked. Painlessly, she did her job while telling me funny stories about cultivating exotic daffodils while being locked in mortal combat with squirrels. Here again I attribute the outcome of the experience to the skill of the operator rather than to any silly breakfast business.
I said that I liked the art in the hospital. Pat said the abstract works in the Outpatient Center were “painted by gorillas.” I complimented her on her bedside manner.
“I do this to nine year olds,” she said. “I ask them if they’ve ever had a bee sting, and when they say yes, I say, ‘this hurts less than that.’ It’s all in your frame of reference.”
Baltimore on sticks
Then I got to have a consultation with a doctor and sign consent forms. He had a cup of coffee and was drinking it like he was a very, very thirsty man. I felt like I was interrupting a sacred ritual with my pesky questions and the like.
He was trying to talk me out of general anesthesia. He said he’d personally had it once, selected it because he was “afraid of needles”, and he was uncomfortable for a week. He was trying to sell me on the “local” anesthetic, it’s just a needle in your back “like an epidural.” I don’t have any kids, but I do know that no one has anything nice to say about the epidural, except that it’s slightly better than childbirth. And who wants to be AWAKE???
“You’re a doctor, and you’re afraid of needles?” I said.
Bone marrow is a soft, sponge-like red liquid that contains stem cells. It is taken from the back of your hips, from an area called the “Iliac crest” with a big hollow needle while you are, ideally, unconscious. The pain has been described as “stiffness and soreness”, “uncomfortable”, and “like a fall on the ice.” I thought I’d see what Coffee Doc had to say.
“It’s not like pain pain,” he explained. “More like getting hit on the lower back with a bat.”
Headless horse, Visionary Art Museum, Baltimore
After that I went to Baltimore’s American Visionary Art Museum to cheer myself up. I wanted to see more work by Paul Darmafall, the Baltimore Glassman, and the works of other untrained, obsessed and/or insane “outsider” artists. One artist started making religious paintings on doors after relatives died in a fire and firemen couldn’t get the doors open. Another chose painting on paper plates as a muse. The museum is covered with beautiful mirrored mosaics made by at-risk youth. The message I came away with is to make art because you are compelled to, not for fame and glory.
When I got back to the west, I went to the beach for a few days to try to reset my head.
There were some hopeful signs of spring:
Skunk cabbage, which is supposed to smell like rotting meat when cut.
There were also the soul-crushing displays of continued garbage dumping, unabated.
So it wasn’t totally restorative. It can be hard to wipe dread from your mind.
“I get fresher under pressure.” That’s what my horoscope said to chant.
I don’t think these anxiety meds work, but there were a couple good dreams. Grammy showed up and we lay around on the shag carpet in the sun reading the Washington Post. Now the nightmares are getting creative: in one, the bone marrow transplant caused pancreatic cancer, an interesting leap of subconsciousness, I thought.
Paul Darmafall, “I Cannot Tell a Lie In Silence”
I wish I could say that I’m brave, or selfless, or a hero, or a good daughter, or that at any point anyone asked me if I was OK with participating in this little experiment. But no. I got some tubes in the mail with instructions for a blood test and the news that I had “graciously offered.” I wish I was gracious. I wish I had unquestioning faith in doctors, hospitals, and Western medicine in general.
“It’s OK to have other feelings,” my friend Glenn told me.
But, sorry as I was feeling for myself, things are much harder for the Recipient. My poor Mom. They give you enough chemo to practically kill you, so that you’ll be a blank slate for the Harvest, like new-fallen snow.
Fell’s Point at night, Baltimore
So I got to make another trip to Baltimore for the “Harvest” on April 9. I could see that my pre-op day on the 8th was going to be the last likely day of any fun in Baltimore. I got up early and went to the Aquarium before my noon appointments.
Duck in Inner Harbor
At the hospital I had more blood tests, another physical, a debriefing about wiping myself down with special antiseptic towels in the evening before and morning of Harvest, and a big packet of instructions, including the directive to “shower, shampoo and remove all nail polish.” UNBELIEVABLE!
I just finished reading Hell’s Angels: A Strange and Terrible Saga by Hunter S. Thompson, and the implications are clear. This outlaw biker gang is stripping me of my colors.
My Dad, a military historian, informed me that April 9 was the day of General Robert E. Lee’s surrender at Appomattox. Lee wore an immaculate uniform for the meeting, while Grant wore a ratty flannel shirt and trousers tucked into muddy work boots.
I opted for a T-shirt, sweat pants, and my lucky Mermaid socks.
I had to report to the hospital at 5:15 am. I took a cab in the pre-dawn darkness in a dream state. Then I had a good two hours to sit around reading Vogue until anyone gave me the time of day. In Vogue there was a ridiculous fashion shoot by Annie Lebowitz featuring the heroes of Hurricane Sandy, with models in $6,000 ball gowns, arms linked with the Rockaway Fire Department and the like. Less frivolous was an article about how the “backscatter” X-rays in the airport are really not safe, are banned in Europe, and a thinking person wishing to avoid cancer should avoid them and request a pat-down.
Since I was told not to bring any valuables like a camera to the Harvest, I’ll let the stars of the Aquarium illustrate the proceedings.
My anesthesiologist was young and friendly. He wore a blue plastic Axl Rose-like doc-bandanna instead of a goofy hairnet like the rest of us. He, too, made a case for the “local”, using the epidural analogy, and looked sad when I shot that down. He said that general anesthesia can cause “broken teeth, lip damage, heart attack, stroke or death.” I said I read on the internet that 80% of bone marrow donors have general anesthesia, and I would try my luck.
Then a guy came in to set my IV. He said, “My job is that you not feel any more pain after this.” He told me the vein in my left hand was “beautiful”, and proceeded to jab a needle in it.
Then Axl-Doc, the anesthesiologist, wheeled me on the stretcher to the OR, which looked as creepy as on TV, with big round overhead lights. Axl-Doc set an oxygen mask over my nose and mouth. “You’ll feel a little goofy,” was the last thing I heard him say.
I was pretty certain I wasn’t dead when I felt the old familiar flickering flame of irritation and annoyance.
Of all the nice, capable, competent staff at Johns Hopkins, why did I have to get a nurse like this? The sound of her voice got on my nerves before I could open my swollen, crusty eyelids. She spoke to me like I was a retarded child and to the staff like they were idiots on their first day.
Let’s call her Bad Katherine. (She is not to be confused with Good Kathryn, the bone marrow coordinator, a fearless woman of compassion, integrity and expert listening.) Bad Katherine had the unmistakable attitude of a worker on the job too long: I’ve been doing this for 20 years and I’M THE EXPERT! Ever notice how truly competent people don’t go around announcing how competent they are?
The Nurse Shark does not need to swim in order to breathe.
Pain can make you grumpy, but I was certain my instincts were correct when Bad Katherine went on her morning break and a nice guy named Vincent showed up. Without my saying anything, Vincent deduced that I was very, very thirsty, yet unable to perform any complex drinking moves. He got a cup of ice water and a sponge on a wooden stick and stuck the sponge in my mouth. Then he moistened my lips, which were cracked and dried and swollen as a clown’s. It was an act of such thoughtful human kindness I got tears in my eyes.
In a strange Catholic flashback I recalled the scene where Jesus is on the cross and asks for a drink and they do the old sponge-on-a-stick trick. Except that the mean prankster Romans give him vinegar instead. And, of course, I’m not that kind of hero, nor was I that kind of laid up.
“Please,” I croaked to Vincent. “Please, please stay. Let me trade that nurse for you. I hate that woman.” But he laughed like I was joking, and Bad Katherine returned and he disappeared.
Bad Katherine alternated between condescension and neglect. I hadn’t seen her in awhile when the Harvest Doc himself came to see me. He was a Hispanic man of few words, delivered at 90 miles per hour. He said that I was probably in a lot of pain because “you were very difficult to aspirate.” Aspirate? Did this mean that they had to drill extra holes in me? That there were complications? He disappeared too, and I had no dictionary handy, but I did gather that I was, according to my doctor, supposed to be in a lot of pain.
Meanwhile I could hear Bad Katherine chatting it up with a patient who happened to also be a Johns Hopkins staffer, who worked in the Outpatient department. Why, she must’ve trained with some of Bad Katherine’s contemporaries, like so-and so, and so-and so! Blah blah blah blah blah blah blah blah! The Harvest Doc’s suggestion that I should be in pain, accelerating, stabbing pain, rising panic and rage converged to create a total freak out. Yet I could not speak louder than a croak, nor was there any kind of call button. So I sat there and cried.
After a very, very long time Bad Katherine made an appearance. “Oh my goodness, Honey, are you crying? Are you in pain? How do you rate your pain?” The scale is 1 to 10.
“8!” I hissed.
“OK, Let’s switch from Fentanyl to Dilaudid,” she said.
I hadn’t heard anyone mention Dilaudid since my high school ceramics class. I sat across the table from this girl who was a Congressman’s daughter. She was always talking about exotic drugs: Dilaudid, Percoset and Quaalude, “Bam” (to this day I don’t know what that is) and “Crank” (the early biker name for a drug handily concealed in a motorcycle’s crankcase, now known to the world as Crystal Meth). She was a good artist and, unlike me, a skilled potter, yet she was always getting in trouble in class for making ceramic bongs.
The purpose of painkillers is the relief of pain, yet shortly thereafter I achieved a pleasant liftoff.
Pacific sea nettles
For a while I was inside a Zoetrope, the marvel of early cinema, watching the strobe-lit stop-action world flash by. Then I had the distinct impression that I was floating on the ceiling above the hubbub at Ross Dress For Less. After that, every time I saw Bad Katherine I said I was in pain.
My IV, meanwhile, was returning my previously-donated pint of blood to me and pumping me full of saline as well as delivering the Dilaudid. It was coming up on 3 pm now, and I was beginning to think that I would really like to leave this party. I was getting sick of the hospital! I was tempted to rip the IV out myself.
“Oh no,” Bad Katherine said. “You can’t leave until you meet ALL the requirements.”
“I am prepared to exceed your expectations!” I snarled. I could see the techs chuckling at that. My assignments were as follows:
1. Eat some graham crackers.
2. Stand up.
3. Walk without throwing up.
Yet each of these proved more difficult than imagined. It was well after 5 when I got out of there. My brother David gave a ride to me and my cousin Linda Langley, my designated caretaker. Linda and I walked across the street from my hotel and I had a salad with lobster and avocado that seemed astonishingly delicious after those graham crackers.
Unlike Hunter S. Thompson, I have never been stomped by the Hell’s Angels. But if they were shrunk to the size of Barbies, and commenced their chain-whipping and kicking in their miniature steel-toed Harley-Barbie boots on the top of my butt, I think it would feel something like this. It looks like a tie-dye back there.
Meanwhile, no sooner had I been Harvested than they administered my bone marrow to Mom via IV. Crazy! So now she is doing lots of chemo, which somehow kills the bad guys but not my good guys, and taking lots of anti-rejection drugs. It’s a transplant, after all. So now it’s all up to faith or medicine, whichever you believe in.
Dad and Mom in Baltimore
I had a post-op appointment the next day, where I weighed 15 pounds more than normal thanks to all the lovely IV fluids. “I hope you’re ready to treat my depression,” I said. I had bags under my eyes that looked like Concord grapes and a weird fat lip on the side of my mouth from the anesthesia tube. They gave me Oxycodone, not to be confused with OxyContin. No one would be bored enough to abuse this.
Then the day after that I got to fly home. I requested a pat-down instead of an X-ray, because cancer is nothing to play with. And then, through a combination of Skymiles and Delta feeling sorry for me, I got to fly first class. I got a hot cloth towel to wipe my hands, a linen napkin, bottomless drinks, some nice chicken in a pomodoro sauce, polenta and steamed snap peas on real china, a green salad with yellow peppers, a piece of chocolate cake, and my own personal salt and pepper shakers. So you may want to consider being a bone marrow donor yourself.
I really need to get a gig as a wine critic. This tasty Malbec from Argentina has notes of nail polish, bone marrow and Baltimore.