One - Diagnosis
“So we have lots of results,” Dr H said, turning the computer screen so I could see it. “And some answers to our questions.” It was 6 August, 2012. Monday.
I tried to read the screen faster than she could talk through the lab results, as if pre-empting her in my head would somehow change what I knew she was going to say. The 10 vials of blood they’d taken two weeks before had resulted in a considerable number of pages to scroll through. Some were familiar - CBC, liver panel, ANA comprehensive panel; others were new: EBV, LDH, ESR. At the first appointment, she’d rattled off these many names while perkily clicking checkboxes in the system: efficient, confident. Not a big deal. Just tests. A lot of little tests. Except one: Flow cytometry.
There are only few reasons why a doctor would order a flow cytometry test. None of them are good.
All seemed relatively okay at first. Yes, my WBC count was 13.4, but that was down from the 15.2 it had been 8 weeks prior. My ANA titer was still speckled at a 1:40 ratio, lower than before. Start trickle of false gladness. She clicked through a few more pages and said, “So that gets us to the flow cytometry results.”
Best for last. Always.
There was no number, easily bolded to tell if it was out of range. Just writing. Lots and lots of writing. I tried to read but my eyes suddenly did not want to work.
The world got very still.
Dr. H said quickly, calmly, straight up: “The flow cytometry showed you have an overabundance of clonal B lymphocytes which is consistent with chronic lymphocytic leukemia.”
In truth, I wasn’t surprised. Not at all.
You don’t compile the massive laundry list of ailments and complaints I have and get to disembark from the apocalypse train mid-way through the journey with your suitcase only half covered in stickers. Nope, you bought the full ticket so you’ll ride all the way to the end, stopping at every brutally scenic test and symptom and fucked up situation until the final station is in sight.
I’ve done my best to wrest the controls from the train conductor. I’ve led a fairly healthy life. Never drank, smoked for a hot minute as a teenager but quit at 18, exercised pretty regularly, kept my weight in check and my blood levels within normal limits. Worked hard, played hard, pursued my dreams and ensured I was diligently checking things off on the bucket list early rather than waiting. Went to the doctor religiously as I never, ever felt quite right. EVER. Had a few heated conversations with medical professionals about hyperchondria but always knew in my heart of hearts that I was not Woody Allen in Hannah and Her Sisters but I was onto something, just so faint no one other than me could hear it.
I have cancer, I thought. Dr. H is diagnosing me with cancer. Right now. It’s happening. She’s sitting there, all perky and blond and 40ish, a lot like me, with her kooky high heels and fit, little pale legs, and she’s telling me I’ve got a “whiff” of CLL. Maybe the average person would think “not that big of a deal” but I can see in her a practiced control as she speaks. I know this is serious business.
Another flurry of tests are ordered. They write them all down in a calendar booklet in which to track my appointments. I’m sure there are now going to be many. On the cover, “Fight Cancer” is printed in huge, gritty letters. Fight = grit = whatever.
I hide the calendar booklet within my lab results so no one will see it as we walk out. When we’re at home, I stick the booklet in my desk bookshelf upside down so I can’t see the words.
I spend the rest of the day mostly in denial, working from home and crying in alternating spates. People keep me if I am okay as I am all sniffly and stuffy on conference calls. “It’s a cold... or something,” I say.
Two - CT Scan and Bone Marrow Biopsy
Up early, back to where the Official Worst Monday Ever on Record started.
On the way into the CT room the tech does the usual check to verify what procedure I’m there for. “So you’re here for a neck scan?”
“No, I’m here for a full body scan... uh, neck, torso, the whole deal.” I stop, unsure, tongue-tied on terminology. I’m not saying it right but my brain is made out of oatmeal right now.
The tech is somewhat churlish. “Well, my chart says you’re here for a neck.”
I know this isn’t correct. “I’m having a full body PET scan tomorrow and this CT is supposed to go with that, it’s more than just the neck...”
“My chart says you’re having a neck only.”
I was doing fine until this - now, I am mistrustful and afraid. My voice quavers. “Please check, I don’t think that is right, I know I’m here for a full body...”
From out in the hallway, a very business-like female nurse calls, “She’s here for a neck, chest AND pelvis!”
Undaunted, the tech mutters, “Well, it said only a neck on my order.”
Great start. Douche.
Time for the ubiquitous flimsy gown. It is cold in the room and I immediately begin to tense up and shiver. My eyes drift over the CT scanner, smooth sensuous curves dimly lit, LED readouts glowing over the portal. They are bizarre machines - almost reassuring in their lovely plastic simplicity.
Until I notice the contrast injector.
I HATE the contrast injector. My first run-in with one was during an emergency cardiac CT back in 2006 for a possible heart attack. Turns out it was only a panic attack - a really, really bad one - but my readings were so weird they couldn’t tell what was up, so they did a CT. I wish I was one of those people for whom panic wipes out memory, but instead I have a “crisis autosave mode” where my brain hits save 15-30 seconds so I can re-enjoy my terror later, over and over again. The cardiac CT is particularly intense as both barrels of the contrast dye shit are pushed into your heart in the space of 10 seconds, facilitating the capture of clear pictures of all your coronary vessels. This fast push fills you with the most intense burning sensation you’ve ever felt, mushrooming across your chest as the dye moves through your heart and into your lungs. Your heart, vastly insulted by having all the blood in it replaced with a foreign agent, hollers “what the fuck?” and squrims angrily, forgetting to beat. You get to hold your breath throughout this whole delight for about 30 seconds, which makes the wormy squirming worse.
It’s just lovely.
The tech looks at me, sees me shivering, and says, “We’ll get that contrast solution in ya and it’ll warm ya right up.”
knows JUST what to say today.
First IV of the day. It’s a big one; they need that dye to go in fast so they use a large gauge needle. He’s pretty good at it and it only stings for a moment. Shaking, knees knocking, so cold. He positions my arms over my head.
“Those are some cold hands!” he exclaims. “That dye will warm them up!”
This isn’t anywhere near as bad as the cardiac CT. The rush of warmth is minimal and my heart is not reduced to a wiggling caterpillar. My shaking, quivering body manages to hold still for the two short scans (60 and 30 seconds). Douchetech again exclaims how cold my hands are even after the dye but that’s the worst of it. I am unhooked and allowed to go free.
Outside, the hot Texas morning sun feels so good. We sit in the car for a minute, thawing gratefully. Everything is so normal - the sun, the guys doing construction outside, the fuzzy upholstery of my truck seat under my hand. It’s Tuesday morning, 9:35am and I’ve got FUCKING cancer.
One test down, one more to go.
Bone Marrow Biopsy
Ninety minutes later, from clinic to house to hospital, another waiting room. Cold again. So thirsty and hungry.
There’s nothing like the no liquids or food after midnight to get you off to a good, dehydrated, low blood sugar start for a big day of surgery or testing. If you weren’t already feeling sick, you certainly are by the time of your test. When I’m depleted like that, my body can’t maintain temperature well and I become very cold. It’s hard for me to process information or make decisions. I get this horrible, dried-up, wan look and my hair looks like it's been on tour for a week. Doesn’t matter if I washed it the night before. There’s nothing like stringy, dirty hair to make you feel pathetic.
Time for IV #2 of the day. Nurse goes in upstream of the same vein used for the CT. I have at least 3 awesome veins in each elbow and she has to pick the one already used. WHY.
I huddle under two blankets and the hot air gown. It’s called a Bair Paws. I hope the inventor of the Bair Paws is sailing the Rivera as a billionaire right now because that toasty gown (with my own remote!) now becomes the best part of my morning. My misery decreases and we even find the room to joke about how happy the cat would be if we had one of these at home.
Being at the hospital is kind of like playing a show. They make you to get there hours early, you unload all your shit, get ready and then sit and wait. At least at a club you can work on getting drunk while you sit around. At the hospital you can’t even have goddamn water.
At 1pm, the nurse comes in with her pile of papers and big smile. Big plastic smile. I know that smile; I’ve given it at work a million times when there’s emotion flying around and I have to stay detached. She knows why I’m here and how much it sucks. As she explains the procedure in great detail, I keep listening for the welcome words: “At this point we’ll give you some medicine to make you go to sleep” but she’s rolling on about cross hairs and needles and aspirations and how sometimes people feel this part and nowhere in the fast flow of words is anything about sleeping.
“I’m not going to be awake for this, right?” I interrupt.
“Well, many people snooze through the whole thing but wake up a little when the marrow is aspirated,” she responds.
“I thought I was having twilight sedation?”
“You are. Conscious sedation. You’ll get Versed and some Fentanyl.”
“Not Propofol?” Propofol, the killer of MJ, is one of the greatest drugs ever. It knocks me out fast, gives me wacky nutty awesome dreams, and wears off in about 15 minutes. Every time I’ve had twilight, it’s been Propofol.
I can tell by her expression that I’m not getting Propofol. I learn right then that twilight anesthesia and conscious sedation = two very different things.
Beaten, I sign my various consents and am wheeled out.
In the procedure room, the experience is explained in great detail once again by the technician. At this point, I’m tired of waiting. He’s making small talk, I can tell he’s stalling, and then he admits he’s stalling because the doc hasn’t shown up yet. This is another CT scanner, no contrast injector in sight. The room is harshly lit and, of course, freezing cold.
Roll over onto the “couch” of the CT, on my stomach, gown open, butt exposed.
“I’ll do my best to ensure your dignity,” this tech says.
“Don’t worry about it, I have no dignity left.”
He puts a nasal cannula on me then has me prop my chest up on a pillow, clutching the pillow with both arms. My hair, which they have forgotten to contain in a paper hat, is twisted under my chin, along with the oxygen line. The pillow presses hair and tubing into my throat, making it uncomfortable to breathe. Commence misery.
Since they have reminded me several times they are dedicated to giving me an exceptional experience (does hospital marketing actually think that verbiage makes ANYBODY feel better?), I draw attention to my discomfort and am disconnected, stuffed with another pillow, my hair untangled and generally sorted. They keep repositioning my IV arm which doesn’t exactly hurt but allows me to feel the plastic catheter every time they bend my elbow. Goddammit, stop.
“Watch my airway when you give the sedative,” I say. Normal patients say, "Make sure I'm okay." I'm sure they're rolling their eyes at each other over my bare ass.
They begin laying out items on the couch in front of me. There’s the first needle, for aspiration. It’s big. Then there’s the second needle, for the biopsy. It looks like an icepick.
My shrunken brain sees that and states: No. No. No NO NONONONONONO...
At this point, I’m feeling mighty sorry for myself. Mighty sorry. Big silent tears roll out of the corners of my eyes and down my cheeks. Despite my dehydration, my nose kicks into overdrive and produces a gallon of snot. Where does it all come from? The body never ceases to amaze.
The nurse and tech try to cheer me up by commenting on how young I look. At this point, the doctor bustles in. They engage her in a game of guessing my age. After looking at my blotchy, tear-wet face, she hedges a “30”, I give the requisite correction of “40” and am met with the expected “oohs” and “ahhs” from all present.
I feel like an ultra rare lab animal and it makes me mad, which helps dry up the tears.
Now the fun begins. The nurse asks permission to give me double the dose of Versed as “this young lady wants to sleep through the whole thing.” Doc says okay. Nurse pushes the dose and it comes over me very slowly. VERY. SLOWLY. My head sinks into the pillow but I’m still awake. Arranging of things (needles, antiseptic swabs, containers) is done. I look at my thumbs through my slowing tears.
They start narrating the procedure. “Okay, so now we’re going to insert the first needle, you’ll feel some pressure...”
I don’t feel the needle go in but I do feel it when it breaks through the cortical layer of bone to slide into my marrow. It’s a deep, rich purple-green pain that makes me go “Ooof!” but thankfully does not persist.
“Okay, so now we’re going to pull out some fluid, you might feel than cramp I told you about earlier.”
I feel nothing.
“Now we’re going to take the bone marrow sample.”
At this point, it gets ridiculous. I feel heavy pressure on my butt and then the sound of hammering rings through the room. CHINK CHINK CHINK CHINK CHINK!
“You doing okay, sweetie?” the nurse asks.
“Yeah.” Amazingly, zero pain. Just a tundra core sample here, thank you.
CHINK CHINK CHINK CHINK! The doc is hitting it really hard, putting her shoulder into it.
“Okay, we’re done!”
Awake through the whole thing. Fucking A. As they wheel my boggled self back into the room, my better half is greatly surprised by my alertness. The nurse joins in, clearly excited. “I’ve never had a patient get two doses of Versed and stay awake and talking the entire time!”
you I wasn’t going to sleep without Propofol.
I did go to sleep as soon as I got home and had a worried and confused kitty stomping on me. Then I got up and worked for three hours.
Three - PET Scan
Before you have a PET scan, you have to watch your sugar intake as tissue metabolism is critical to the accuracy of the scan. The night before, dinner has to be protein and veggies. You can only drink water. I don’t do well on a protein-veggie diet. I need my carbs, especially after a long day of being scanned by douches and hammered on by pert doctors. The evening had been spent watching “An Idiot Abroad” and choking back waves of nausea while simultaneously craving anything with a glucose molecule in it. This morning dawned breakfastless, dehydrated, shivering, and super foggy-brained.
You also have to stay warm before a PET, so I donned a tank top and a long sleeved shirt and my white sport hoodie. After 10 minutes in the waiting room, I was shivering under the hoodie while picking through work mail on my phone. Why do they have to make these places so goddamn cold?
Finally, I am called back. We walk through a number of hallways and start heading for an exterior door. Ooookay... out we go, into the 11am Texas heat. Ahhhhhh...
The nurse leads me through the parking lot. I know about PET scans - they involve radioactive tracers so my gluey brain surmises we’re heading to the building on the other side of the lot. We hang a left, away from the building.
Then I spot the tractor trailer emblazoned with “Texas Oncology.”
Yep. The PET scanner is in the trailer.
Inside, it’s the IKEA of nuclear medicine. There should be tags with clever names attached to everything. A tiny workstation (Galant $99.00) divides the PET scanning room from the patient area. Recliners (Vreta $349.00) are snugged into the back corner, separated from each other by a wall (Vägg $125.00), forming two tiny private patient bays. A pair of legs protrude from the reclined seat in the right bay, fragile transparent bloated skin and dowdy shoes (Skor $40.00) bespeaking old lady (Gammal Dam $Market Price).
They sit me down, turn on a heater (almost as good as the Bair Paws), cover me with a warm sheet AND blanket. My cup runneth over. Happy.
Time for IV #3. Nurse goes in upstream of the same vein used for Monday’s blood draw. Again, WHY?
She makes up for it by giving me a bottle of water with which to take my Xanax. I’m eyeing the PET, trying to gauge the depth of the tube. It looks doable without Xanax, but what the hell? I’m full of clonal B-lymphocytes, CT dye, Versed, Fentanyl, protein, veggies and now radioactive glucose. Why not add one more chemical to the shit soup that currently flows through my veins? Down go both Xanax and all the water. Yes.
I plug some Immolation into my ears and wait while the tracer absorbs.
By the time I hit the PET couch, I’m really feeling the Xanax. Totally ready to go to sleep. They snug me into the various foam wedges, throw my arms up over my head, secure my elbows with a velcro band, blanket me up and hit the go button.
I promptly fall asleep and snooze through the whole thing.
One small victory.
I am rousted and trotted back across the parking lot to the main building. Nobody gives me ANY instructions about what to do or not do with my radioactive self, so we go to Hopdoddy Burger Bar, eat big sloppy burgers and fries (oh carrrrrbs), and pretend like nothing is wrong.
Then home, nap, work with breaks for crying.
Life grinds on.
I wrote the above right after my initial diagnosis. It’s been a few weeks since, and I’ve spent a lot of time thinking, analyzing, researching and sitting with my feelings. I’ve learned a shitload and have thanked my lucky stars many times for my time working at Shriners and Mass General Hospitals, as I have been able to easily navigate the heavy technical jargon of the abstracts I've been given. Those six years were worth something after all.
I went back through my giant pile of lab results, accumulated over my last 10 years of chewing through doctors like a West Texas boy chews jerky. There it was, in May 2011, so subtle nobody noticed, but now that we know, the pattern is obvious.
I’ve had cancer for at least 18 months now.
My CLL is barely Stage 0 but is complicated by the dreaded 17p gene deletion. I also have the more benign 13q gene deletion which will help attenuate the generally dismal outcome of having 17p. My prognosis is okay for now but it's hard to say what is to come.
I plan to be the exception to the rule, whatever the rule is. My entire life has been one bizarre medical oddity so I see no reason why my experience with CLL should be any different. I’ll beat these odds and maybe, finally, someone will get a paper out of me.
The last 12 years of my life have been a very focused time of grown up work but also living on my own terms. I was on the right path but after I broke my hip in 2006, I kicked the systemic identification and crossing off of bucket list items into overdrive. Something in my soul said “Don’t wait.” I can happily say that I’ve gotten to the point where I now need to add things to my list in order to have items to scratch off. My life is exceptional. Everything has been gravy for a while now.
I emerged from the catastrophe of my childhood and never looked back. I’ve met my heroes and have become friends with many. I’ve been on stage more times than I can count. I have 7 albums to my name and another in the works. I’ve rubbed heads with wolves, human and animal. I've swum with sharks. I’ve felt the freezing wind on top of a mountain and marveled at my smallness in the world. I’ve experienced ghosts, a Japanese earthquake, and ironically, sipped sweet marrow from bones in Singapore. I’ve inspired people at my job and helped create some great things. I’ve watched fruit bats fly in front of the Sydney opera house, their wing membranes backlit orange, the vast ochre, honeycomb dome of the ‘House contrasted against the black night sky and the gleaming Sydney quay. I married my dearest love on a Viking gravesite and celebrated our union in a longship in Stockholm harbor. I’ve traveled thousands of miles, crossed oceans and continents, and have found my home in the sweltering heat of Texas. I have found so many great friends all over the world who are my family now. And most of all, I’ve felt the surge of something vastly larger than me coursing through my body in the fetid dark of a club while a band on stage poured its soul into their instruments. Over the past year, I have learned how to tap into that Other with my own music, so that I may channel it out into others so they may feel that same, unknowable power as I have.
I don’t fear death.
Not to say I don’t have fear. Of course, I am afraid. I’m afraid I will suffer. I’m afraid this disease will make my body grotesque. Yes I admit it, I’m vain and glad I look 30 when I’m 40 and I want to stay that way. I’m not too afraid of being bald as that will give me the excuse to buy some kick ass wigs, finally learn how to draw on eyebrows and can paint my head for stage to look utterly terrifying. But I’m afraid of the pain and sadness my friends and loved ones will experience as I walk this path. I’m afraid I’ll lose my financial security and the comfy future I worked so hard to build. And I’m deeply sad... sad that it has to be this way, the way I kind of always knew it would be. I’m sad I was right, that the whispers I heard inside me for so long were real.
But now that it’s here, like a storm anxiously awaited, I am also relieved. Now I can just get on with it.