About six months ago, I posted the photo below on Facebook, with no explanation of what was written on my arm. A few folks asked and I replied that it was a blog post I had yet to write. Well, I’m writing it!
When I was in Lisbon last year for Web Summit, my dear friend Peter Bodenheimer invited me to a fantastic party hosted by Chris Schultz and his lovely better half Anne Driscoll. Pete, Chris, and Anne are all NOLA troublemakers. Another NOLA troublemaker is Robert X. Fogarty, the founder of DearWorld.me. Dear World has done some AMAZING portraiture over the years since Hurricane Katrina, and I was beyond honored to be included in their panoply of portraits, as they had arranged to have one of their photographers at this party in Lisbon.
Dear World collects imagery of people and their messages – messages written on their hands, arms, and elsewhere. Hit the link above for all sorts of interesting portraits and stories. So what was the story on my arm, you ask?
At age 10, my son was diagnosed with cancer. It was a pretty shitty day then week then year then years. Specifically, he was diagnosed with T-Cell Acute Lymphoblastic Leukemia (ALL). Leukemia is basically a cancer of the bone marrow and white blood cells, wherein the body over-produces fucked-up white blood cells, and in so doing wreaks havoc on the bloodstream – and thus the entire body. I’m simplifying, but you get the idea. If you have too many white blood cells (especially fucked up ones) you’ll have less (or no) room for useful red blood cells and healthy white blood cells. It’s an all-around bad situation.
When my son was admitted to Mass General, the doctors were amazed at how high his white blood count was. Through the first day or two I kept asking the doctors how bad his white count was. None of them would really answer me. They’d share a number, but I had no way to grok how that stacked up against a normal number or an outrageous number. When I pushed, I’d get answers like “it’s really high”. His counts were so high that they couldn’t risk anesthetizing him when they put in his first port in (a PICC line, if I’m remembering correctly) during that first night at the hospital. Part of me died that evening holding his hand while he endured that ordeal. His mother had to leave the room. It wasn’t something I’d wish on my worst enemy.
All through all the countless blood tests, pokes, prods, and various scans and x-rays, I kept asking how bad he was. It was crystal clear he was in shitty shape – by any measure. I didn’t have to be a doctor to see how fucked he was. Everybody was doing a lot of crying and worrying and fretting. All I could get out of the docs for the first couple days was that his counts were “really high”.
In addition to the problem of fucked-up white cells crowding out useful red cells et. al., the bigger problem is that you can’t just snap your fingers and kill all those bad cells. If you did, there’d be a river of sludge in his veins and arteries that would just shut down the system. The mechanisms that kill those cells cause ‘lysis’: the bad cell ruptures and dies – which is great – but the body has to clean that shit up, and that takes time. So you have to kill these bad cells slowly enough so the mess can be cleaned up, but fast enough so the disease doesn’t get further out of control (remember that the A in ALL stands for Acute).
Once my son was stabilized, we just had to wait and hope the counts went down with treatment – but not too fast. I knew he was in bad shape, but I didn’t know how bad. On the second night (maybe it was the third) at around 0200 or 0300 I saw one of the docs from the pediatric hematology-oncology group outside of his room. I didn’t know the dude from Adam, but I did know that he was easily the oldest doc of the group that I had seen to-date. I figured if anybody had real context, he did.
I was a mess from lack of sleep, but walked out and said hello to him. He was reviewing paperwork. I casually said “Pretty high counts, huh?” He responded “Yes, very high.” Then, mostly because I’m an idiot, I asked the question I didn’t really want the answer to: “Have you ever seen counts so high before?”
He paused and was clearly mentally flipping through a rolodex of test results he had collected over his undoubtedly extensive career. Finally, he responded “Yes, one higher.” This 60-something or 70-something pediatric oncologist had seen one single patient in his long career with worse numbers than my son.
At that point I stepped off the ledge and asked the moronic question “What happened to that kid?” By some miracle – or perhaps he was just mercifully lying to me – he responded “He’s doing great now. He’s 17. I just saw him not too long ago for a checkup.”
So that’s the story of “yes, one higher.” Thankfully, the myriad treatments at MGH cleared my son of his cancer. He’s almost seventeen now, and is still cancer-free. Touch wood.
Yes, one higher.
FYI/FWIW – I’ll be off the grid for the long Labor Day weekend starting this evening until Tuesday morning. If any of my peeps need me urgently, you can TXT my cell.
Please meet Sabo! He joined our family this afternoon and is VERY happy thus far! His name is pronounced SAY-bo. Sabo is a nearly-one-year-old doggie who hails originally from down south, N’awlins way. He was a stray that was taken in and fostered south of the Mason-Dixon for a few weeks and then transported up to MA via the PHENOMENAL folks at S.H.A.R.E. New England. Sabo is a mutt. We think he has some Chow in him and some Golden Retriever – and who knows what else. We don’t really care much. What we DO care about is that he’s apparently the happiest, cutest, friendliest, loviest creature on the planet! He’s basically a fifty-pound lap dog who can take every bit of affection you can dole out – and then some 🙂 .
Wish us luck!
About a week or so ago we started foster-parenting Milo. Milo is a two year old boy kitty who started his life in a rough way, on the streets of Boston. When he was found, they thought he was a female kitty ‘cuz he was taking care of an abandoned kitten.
We took him in and are falling in love with him. He has what we refer to as “insta-purr” – the minute you touch him he’s happy as a clam being pet, rubbed, scratched, and otherwise paid attention to. He’s a HUGE galoot running about 20 pounds – and he doesn’t have that much weight to lose – he’s just a big damn cat! He’s a serious sweetheart of a cat. Off-the-charts loving and lovable.
Unfortunately he’s FIV positive – a result of living on the streets for so long. Apparently as much as five percent of the cat population is FIV positive now. It’s not dangerous to humans, but it’s a bummer for all involved. We’re keeping him isolated from the other cats – though he’s had a few carefully-supervised excursions throughout the house.
Pelase say hi! Meow!
My last grandparent, my maternal grandmother Florence Blongastainer, passed yesterday.
She was 91 years old, and until 18 days ago, she was living on her own, still driving, and happily causing trouble. She grew up during the Great Depression in a family of six kids. As a very sickly child, the doctors told her parents she probably wouldn’t live to be a teenager. She made it just a tad past that ;-). Along the way she brought up two fantastic children, thoroughly enjoyed her six grandchildren, and doted on her fourteen great-grandchildren. I’m extremely grateful that she and my kids got to know each other well. They, like me, are going to miss her a lot.
In 2011 we had a big family party to celebrate her 90th birthday. There are lots of pictures extant that include me with my tongue hangin’ out and a bourbon in my hand. My grandmother however actually possessed some decorum. During the session with the photographer at her 90th, I managed to cajole her to raise her glass and (nearly) stick her tongue out. I’m glad I did, as I really love this picture and will treasure it.
When I shuffle off, I can only hope to be half as fondly-remembered as my grandmother is. Miss you, grammy.
I’m a bit of a neat-freak, as my friends and family will attest. My desks at home and work are usually quite organized and laid out with their requisite ‘stuff’ in its requisite places. When we moved into our home in mid-2000, before the kids were born, I had the house quite well organized, with everything stored in its requisite, rational places. I knew kids were going to be an amusing assault on my organizational skills and borderline-neatness-OCD 😉 .
I do get occasionally annoyed with extensive messes when it literally looks like bombs went off and you can’t even walk from point A to point B in the house. But luckily, that’s not that common.
The everyday splatter of toys, books, clothing, blankets, computers, iPods, footwear, schoolwork, food – and who the hell knows what else – is comforting to me. It’s kids being kids. It tells me they’re having fun, they’re almost always learning something in their play (legos, books, math and writing workbooks, creative endeavors, etc.), and even if it’s annoying that the living room floor is 30% covered in lego constructs of various flavors, I’m proud of their ability to build cool stuff and enjoy the heck out of that exercise. Each little mess reminds me that they’re kids; that kids play; and that play is good.
This morning I was sitting in the living room, working on my laptop, surveying a crudload of legos, a pile of books, a mess of piano sheet music, and two laptops on one of the couches and on the ottoman. Nothing had been put away. I smiled though – instead of cursing. I love their messes! They signal what they’re up to, what they’re learning, and what’s making them happy. And all that makes me happy!
Besides, how can you get angry at a little monkey this damn cute – even if she is making a mess?!?! 🙂