Tuesday, May 29, 2012

How Old Are You Now?



Happy Birthday to you
Happy Birthday to you
Happy Birthday dear...um...not-cancer-ness (I guess)
Happy Birthday to you
...and many more!

Sometime in the past months I turned 40. N threw a hell of a party. There's a face-in-cake tradition amongst a few of my friends. Kind of a long story.

Some time in the past months I passed a benchmark of age that I thought for many years would never happen. Then for a few years would be a total bummer. Then for the past couple years, would be such, such a gift.

Sometime over the past few days I passed the benchmark of two years in remission.

I thought it was May 26th, but N had it down as May 28th. And, c'mon, I have learned a couple things since all this started:
1-Pulling marrow out of your pelvis cannot be mistaken for heavy petting.
2-N is usually right.

So let's call it May 28th. That means that yesterday I marked two years without any recurrence of Leukemia in my system.

Um...yay!

The specifics of the dating are a little wonky. The remission date is staked in the ground as the day you get the 'all-clear' results from a bone marrow biopsy taken at the end of your Induction Cycle. Induction being the name for the really-super-groovy 31 days I spent in the hospital at the beginning of this party where they try to "Induce" remission by giving you everything they found under the sink with a skull and crossbones on it. Following that logic, prison rape would be considered inducing quality time, I guess.

So they look at what ails you when they wheel you in, they fill you full'a poison Mojitos and whatnot, and they look to their textbooks and studies and decide that X number of days after they start they'll plunge some marrow and see if it worked. And, very good for me, it did.

But I could have been leukemia-free longer by a few days, or not. That part of it isn't an exact science. So the dead-on right date for the two year remission is not intensely critical.

But this is the next in a line of dates or numbers or diagnoses or races or trips or moments that we have wrapped our lives around. You get a Leukemia diagnosis, and everything changes. Everything. Shit you thought mattered SO SO much five hours earlier would be laughable in its folly if you weren't so goddamn scared.

And you live by schedules and knowledge outside yourselves. 31 days on 10 Central to get clean. 9 months in and out of the hospital tap-dancing with poison to stay clean. 2 and a half years of maintenance to keep the beast away for good. Or not.

To use Pat Benatar's version (unless my colleague Dave wrote this one for her, too, in which case I am mis-quoting): Before I put another notch in my lipstick case, you better make sure you put me in my place. Hit me with your best shot. Fire away.'

Huh. That was apropos as hell, and it just came to me. Ah, pop, you serve us well.

Anyway, the doctors set out points on a timeline and you lean towards them or rear away, and they become your life. And I don't mean that in a bad way necessarily--within the context of Leukemia being pretty much across the board, you know, bad. You just have this goal, this grail of 'cured' that has been hurled waaaay off into the distance like the best-cast fishing lure in the universe. And it plops down in the murky distant waters with a gurgled ploip! and it sends off perfect ripples that die away before you can really sight where they were. And then you wait. And hope.

To my Drs, when thinking of my particular A.L.L. and my age and all the variables, it seemed from very early on that "2 years remission" was something to shoot for. The NP said to N very early in the game "At the 2 year point, you can breathe your first sigh of relief."

N grabbed onto that shit with both hands, man. She didn't let go. And here we are.

I have ebbed and flowed. The ups and downs are still etching on my actual carcass, and so sometimes I have immediate truths that push something as ethereal as a date on a calendar away. Sometimes it is leg fatigue or slamming heartbeats in the night. Or sitting across from a rookie in the waiting room on bloodwork day and thinking "God! Shut the fuck up! That hubris is gonna get twisted right the fuck out of you in the form of a serrated needle, tough guy, and you're gonna wish you didn't talk about your gluten into that cell phone quite that loud next to that terrified woman waiting for her gray husband to come out from the barca-loungers. You'll see."

Sometimes the two year mark was a beacon and aiming point. Sometimes I just wanted to get a thousand yards swum before the weekend, or needed a horrible audiobook to be done with. Or held the fistful of pills for Tuesday in my hand and just hung my head, you know?

And here we are.

The more things change, the more they stay the same. And, you know, change. Or whatever.

I am prepping for Eagleman again. I look forward to it with the same terror and grief and excitement as I did last year. I think I am in better general shape--further off the brutality of the Consolidation chemo--but I also think I may have been training a little less. So who knows? I ran a 5K in New Jersey on Memorial Day, and it was hot and humid. This weird family race, where a little girl looked up at her mom as she crossed the finish line and the sight of motherly comfort allowed her fatigue and fear and core temp to win and she barfed all over her cute yellow commemorative t-shirt. I ran 3.1 miles in over 26 minutes. A pathetic time. Unless you take the chemo and heat into account. And then; maybe, not so bad.

But still. Pathetic. I mean, c'mon, really? 26 minutes? What did I, stop for meatballs? An Orange Julius?

My chemo schedule has for the most part stabilized, and for the most part in a good way, with some smaller mysteries and annoyances to keep things interesting.

To recap: the Maintenance phase is where a low level of different chemotherapies are constantly in your system to serve as a sort of early-warning net and active deterrent to the possibility of the Leukemia returning. I describe it to people as the part of the TV show where the bouncer looks at the drunk schlub he's thrown out of the bar already and says:

"And STAY out!"

The poison is doing some anti-leukemic stuff, but it is also just sort of keeping you on alert, keeping you a little under attack all the time, so that if anything starts to come back all hell will break loose and they'll know as soon as possible.

I know: it's not my favorite logic. But I'm not dead; so there's that.

Maintenance bloodwork should be approximately:
White Blood Count between 2.5 and 5
Platelets around 150
Hemoglobin around 12 or 13

These are generalizations, but they represent an immuno-suppressed state that is high enough that you can live life and ride subways and eat gyro platters from corner carts, but you should probably not leave the Rocky Mountain Spotted Tick neck-deep in your crotch-flesh indefinitely.

And if you're gonna go run or swim or bike, you might not wanna get all hyped up by the possibility of winning your age group or anything.

If you recall, it took a little while for the Drs to find the Maintenance balance for me. The third mouth from Alien growing in the back of my throat and some push-button morphine indicated maybe we started the dosages the weeest bit too high. Then things settled in.

I have grown a bit more accustomed to the Maintenance poison and so they have raised the doses slowly to try and keep me in the range.

But I'm a little weird.

OK, yes, you knew that. I mean specifically to this.

And maybe not. Maybe each and every person reacts to chemo in their own specific way, and it is just a matter of seeking balance.

I have a friend who is an ER attending in Baltimore. He's very smart, and he's the kind of a-hole who knows it and shares that fact with anyone in hearing. But when I got sick he did as my stepfather's dear doctor friend did for him: studied up a bit outside his specialty so he could keep tabs on his threatened pal. Oh, and since he's an ER doc, he has the bedside manner of a gang-rape: "Shit, Holt, thank god it wasn't that other strain. Your ass woulda been dead. Fuckin hell. See you at the funeral."

Anyway, he has given me an interesting lesson over the past few months. I have my next Intensification coming up in August: the two-month party where the Drs decide regular daily poison just isn't enough fun and they think maybe throwing a hatchet at your face would work better. And this Intensification is recommended because the smart people at MD Andersen have been following their studies of people in my situation and--

It is here where my ER doc pal sort of snorts. He's very good at the 'derisive laugh.'

He says "The study?"

"Yeah. The studies are showing that people--"

"You know that 'the study' is, like, you and four other guys, right?"

"..."

He has a point. Yes, there are similarities and particular arcs of knowledge and general expertise and blah etc blah. But there aren't that many lucky boneheads with my exact cootie at my exact age with my exact chromosomal whatsit. And on and on.

I'm not trying to get the 'I'm special' award here. It isn't about that. It is just that there are SO many variables for every one of us that you pretty quickly fall off the map of "this works well" and land on the uncharted territory of "well, it didn't kill that guy."

So, back to my particulars. Apparently my hemoglobin is sensitive. Sensitive like the kid who calls his parents by their first names, pees at the urinal with his pants all the way down, wears corduroys well past when the rest of us changed to jeans, and cries himself to sleep under a bookshelf of astronomy books because maybe out there are worlds and beings who don't hurt his feelings.

That's right: my hemoglobin is a sci-fi nerd in hand-me-downs.

And, as a long-time sci-fi nerd myself: damn proud of it!

Anyway, my white count and platelets have been doing what they're told. They've upped my 6mp doses to two-a-day all week with three-a-day twice a week, which at the outset of maintenance would have just been a bus ticket to Deadville. My methotrexate dose has stayed at a halfsie (8 pills every Tuesday instead of 15). And the Vincristine/5-days-pred party has bungled along happily for months and months.

Every three months some unlucky SOB has to lean over my relatively dense skeleton and drill a core sample out of my pelvis. Recently the NP has started making little jokes about 'boy butts.' While there's a chance that's wildly inappropriate, I couldn't care less. She's a gem, she could shit in my soup and still be on our christmas list. And besides, it's nice to have people who have been so focused on seeing you as the disease start to see the you under the disease, to be relaxed enough with your positive progress that they can joke a bit. And, let's be honest: I'm Norwegian Scottish. As Carlin has observed, I need a fat wallet a three handkerchiefs just to hold my pants up. There's no Gaelic word for 'boomin can.'

Medical progress, however, has caused me a shitload more pain, which is always nice. Since I started needing tri-monthly biopsies, a test known as an MRD has come into fashion for shcmucks in my boat. They have used them for true pediatric Leukemia for a long time but now think immature fools like myself could also benefit from the high-level-granularity that an MRD can view your juices with.

The MRD requires some extra goop. So now I get three Pulls instead of two. Three lovely, cadenced, slow-ripping Pulls of marrow, trawled out of my deepest center on a crochet hook. Good stuff.

And I feel bad for whoever's core-sampling me. They're good people. And they like me--or are faking it very well, which is all I need. And I'm a somewhat "bring it on" kind of patient. Go ahead, swing the hammer, as long as it makes me better.

But the Pull hurts. Period, end of report, as N's grandfather used to say. No way around it. And I can't help but make a noise. An evolving noise. So far, each Pull has changed the tone or delivery of the agony sound. As your marrow stays healthy longer the pain increases--lovely getting-better paradox--and I have evolved from a sighing yelp, through table-clutching grunts and arghs, to last week, when what I can only describe as a hiss-curse escaped through my clenched teeth. The NP murmuring 'sorry sorry sorry' while still treacling out the stubborn me.

I feel bad. I really do. There should be no crossed purpose. Yes, there should be empathy. I believe all medical students should get a bone marrow biopsy--god, would that be hilarious! But there should not be a sense of harm. Hippocrates had it figured out. And so I don't want anyone to think that I am anything other than grateful and enduring while they scrape the bolognese out of my tubes. I try to keep quiet. But, you know: it hurts.

Anyway, my hemoglobin stays low. I have some kind of sinus infection right now. Have had it for more than a month. A Dr gave me a Z-pack of antibiotics, but the infection just sort of laughed like the guy on the Captain Morgan's poster and swatted the Z-pack aside. Because of the infection-fighting my, white count has soared to 7.9, which is what normal people have (white counts climb when you are fighting something because the body makes more when needed, like America does with poor people and war).

My platelets were 180 today, which is a little high as well.

I have had to up doses because you're not supposed to be too 'healthy.' The Def-Con 4 aspect of Maintenance demands that you stay a little beat up. I won't be able to even think about running or racing at anything like my old levels for another year, minimum; that's just the facts; I'm weakened on purpose, every day.

But sweet little hemoglobin has been the perfect ward, staying low and lower pretty much the whole time. Let White and Platelets rise and fall, crest and jump, quiet tender Hemo says: I'll be here, crouched behind the wood pile, sucking my thumb, if you need me.

I'm not complaining. I'm not. Seriously. For one gorgeously succinct reason.

I'm not dead.

There are complex human moments and every aspect of this years-long-battle will blur and reform a million times in visions and revisions which a minute will reverse. But underneath it all is the simple pavement of not-dead-ness.

So I'll wheeze while I run and slather on sunscreen and flip through medical bills like a blackjack dealer breaking in a new deck.

I'll choke down the bitter pred pills, and I'll eat the Half-Ironman and smile, and I'll work hard to show N that I am paying attention and not adding undue risk to this precarious life, and I'll act on a stage in a reading where flexing dormant theatre muscles was simply orgasmic, and I'll meet with the nutritionist who never quite understands why we keep laughing when she says 'of course, cutting out red meat would really set you off on a good path' and I'll eat a vegetarian dinner twice a week before I dive face-first into a Steak Picado from Maryanne's on the corner that weighs more than my friend's toddler Ben.

I'll rattle on and on here so anyone still interested or caring enough to check in can at least see that no news is, indeed, good news and that I am still kicking and living and talking and talking and talking.

I won't be gone as long this time. I swear. I get the latest biopsy results this coming week; looking for yet another all-clear. I have to squeeze blood from the life-stone until early August when we go back in for Intensification 2: Electric Boogaloo.

I weighed 157 this morning. Swam 1250 yards. Took 12 pills with my oatmeal, one more later with a cupcake. I got a haircut last week. Probably need at least one more before it comes out without hardware assistance at the end of the summer. We'll see.

We'll see.