We made the journey into Baltimore to speak with a new doctor yesterday, one who specializes in blood cancer. To recap, my white blood cell count has been low for about a year, something I wasn’t really aware of even though Hopkins makes the results of all of my bloodwork available to me through an online portal. In hindsight, it’s been a pretty obvious fact but I assumed I was doing OK because nobody mentioned it before last month.
When we started the process of treating my tumor one of the many forms they had me sign was my acknowledgement that the chemotherapy could trigger follow-on cancer of varying kinds. One of these is an aggressive form of blood cancer called Acute Myeloid Leukemia. My oncologist hasn’t been too concerned with this up until the last checkup, probably because he was waiting for my levels to come back up, which they haven’t.
The new doctor asked me a bunch of questions and then turned to my labs, and did his best to put us at ease. Based on what he’s seeing, he’s not concerned about AML at this point, thinking that this is most likely something called lymphocytopenia, which is a condition where I have an abnormally low level of lymphocytes in my blood. This is usually a result of having a cold, viral or fungal infections, or more severe things like HIV (which I tested negative for), MS, and chemotherapy.
So I did another big blood panel, and we got the CBC results back this afternoon. Shockingly, many of the important things bumped upwards: neutrophils, lymphocytes, and my overall white blood cell count. We’re waiting on the results of some specialized tests—one for something called CD4, the T-cells which fight off bacteria and viruses. If that result comes in low, they’re going to put me on an antibiotic called Bactrim, which will help my system until my levels come back up.
So, in the larger picture, I’m not happy to be dealing with a lowered immune system, but if that’s the worst extent of it, I’m thanking whatever guardian angels I have for their continued watch over my humble head.
I was supposed to have some work done to the Scout on Saturday morning, but the mechanic failed to hear the words “International Scout” on the phone and realized it was going to be more than a 3-hour job. So we rescheduled for this coming Friday, and I hope they will be able to handle it without any further hiccups. In the afternoon we headed across town to hang out at Will’s house for some barbecue and a bonfire in the backyard; it was great to catch up with him while the girls ran and played together, and we stayed much later than we realized.
Sunday we got up late, farted around the house in the morning—eggs are back on the menu, so life is returning to normal—and got ourselves ready to hit the pool. After some last minute inquiries we picked up one of Finn’s friends, staked out a spot under an umbrella on the west edge and relaxed while the girls played in the water.
The greenhouse is producing a ton of tomatoes, and after a brief blossom-end rot scare I think the remainder of the fruit on that plant is safe. The weather was a lot hotter yesterday so by the time I checked in on things late in the afternoon there were some plants looking wilty. We’re looking at 5 days of hot, sunny weather this week so daily watering will be key to keeping things healthy. The cherry plants are by far the most productive, followed by the roma plant. I haven’t figured out what the heirlooms respond to, because no amount of fertilizing the flowers seems to get them to produce more than two or three fruit per plant. I’ve also noticed that there isn’t as much bee activity in there this year, which is worrying. I think the majority of the production we enjoyed last year had to do with bees discovering the greenhouse while I was stuck in the hospital, while this year I’ve been doing the heavy lifting for Nature.
Speaking of hospitals, I’m waiting on communication from my doctors about our next steps. My white blood cell count has continued to drop. They ran a bunch of rule-the-weird-stuff-out tests and I’m happy to say I don’t have hepatitis A, B, or C, and I tested negative for HIV. Not that I was expecting a different result.
Update: looks like I’m going to be scheduling another test.
Jen drove me in to Hopkins on Wednesday to have my port removed. I’ve had this lump on my chest since the earliest days of treatment; it was the first step of many in starting chemotherapy. Essentially the drugs are so caustic that if they injected them into my arm through a normal IV it would eat away the veins there, so they use the port to pump poison directly into my heart. It’s come in handy in the hospital visits I’ve had since then, because I’m a big chicken when it comes to needles and the port is a really simple way to draw blood. It’s not without its dangers, though: as a highway right to the heart the risk of infection is greater. The nurses at Hopkins are super-strict about blood draw policy, requiring special training and a specific procedure with masks and protocol and two changes of gloves. The nurses I had in Delaware were more cavalier, dispensing with the protocol and just jabbing a needle in. This was a bit disconcerting, but I guess I’m still alive.
This procedure was different from having the port put in; it was faster and required only a light dose of Fentanyl to make me happy, but they never knocked me out completely. I basically laid on the table for about 15 minutes under a blue sheet while the doctor tugged and poked and patted at my chest a bit, and I just focused on not giving a shit. Which I really didn’t. Fentanyl is scary stuff.
After it was finished they wheeled me back out and “recovery” took about 20 minutes. I was a little light-headed but otherwise OK, and I didn’t puke up my empty stomach like I did after the biopsy.
So now I’m lump-free with a scar on my chest, and I can’t be underwater for a month until it’s all healed up. I also won’t gross Jen out when I give her a hug, or feel it dig into the shoulder strap when I wear a backpack, or knock into the damn thing with my hand when I’m in the shower, and that’ll be nice.
* * *
Meanwhile, I’m trying not to worry about my low white blood cell count. Hopkins has a handy portal with all of my medical information, appointments, and test results, and when I go back and look at the numbers, they plot a steady decline from last summer to the present day, with no peaks in between. What does this mean? Should I be worried about bone cancer? One of the many releases they had me sign before chemo stated that this was a possibility, but we signed it anyway, figuring we’d hit the tumor with every gun we had. It wasn’t until afterwards we learned the chemo did nothing at all. Did I give myself bone cancer for nothing?
To be clear, we don’t know what this is yet, but the drop predates the elimination diet by months, and everything I’ve been eating is supposed to boost my immune system, not lower it. Is there some other reason? It’s been on my mind a lot the last two weeks, and I’m trying to remain upbeat and calm about things.
From what I’ve read about leukemia, it seems to be treatable if it’s caught early, and survival rates have gone up in the U.S. for those who have it. That’s somewhat cold comfort, but I have to take what I can get in terms of good news right now. And it’s still too early to go out to the Internet and scare myself stupid with more bad news, because we don’t have a diagnosis yet.
Here’s our children as of yesterday afternoon. You’ll notice some leaf discoloration on the plant closest to the camera; I think this is a bacterial infection that can be treated with a copper soap spray (ordered). The marigolds have this too, which leads me to believe it’s something bacterial. That is to say, I’m hoping it’s not Verticulum, which is untreatable and basically means you’ve got to throw the plants out.
I’ve been a lot more mercenary with these plants this year, being sure to cut back any new shoots from the main stem before they produce flowers to prevent the giant explosion of leaves and branches I had last year. Because they’re in the center of the greenhouse they can grow taller instead of wider and it’s easier to access both sides to prune them.
Meanwhile, they’re all beginning to set fruit! The romas (up front) have four, the Beefsteak have three, there are several dozen cherries starting, and I think all but two of the rest have at least one fruit. Still no love for the tomatillos yet.
I did my year-and-a-half cancer checkup yesterday, and after a sonogram, a CT scan and bloodwork, it appears the clot in my arm is gone, I’m clear of any new passengers, and my white blood cell count is low. This last bit is alarming, because we don’t know what’s causing it. I’m not run down, I’m not sick, and there’s no reason we can think of for it to be so low (it’s roughly half the count it was when I was laid up with a busted small intestine). So there will be some more tests performed in a month and we’ll wait to see what they look like before any drastic action is taken. Meanwhile, I’m cleared to have the port removed sometime in the next couple of weeks, and when that’s over with, I’ll be off blood thinners. Hooray!
Drew Magary is one of my favorite writers. His sports writing gets me excited for football season, and he has a special way with soliciting and answering email from the public. Late last year he went silent for a couple of months; it turned out he’d had a brain hemorrhage and was in the hospital for a month. He finally wrote about the experience; I can directly relate to about 85% percent of his story.
I otherwise slept well, except for numerous instances when staff would have to come in to check my vitals or give me appointed meds. They usually did this by switching on all the sour fluorescent lights, which caused me to groan out loud. Then they would say GOOD MORNING MISTER MAGARY! like they were there to deliver me news of Christ’s birth.
He’s a professional, so he writes much better than I do. There were many things I wish I’d been able to say that he said so much better.
I cheated death, and now the Reaper has a chit for my head that he can cash in any time he likes. I now know firsthand that he doesn’t always telegraph his arrival. I was blindsided. When I was young, I thought nothing could kill me. I know I’m old now because I believe that everything can kill me, including just going to a work shindig. I have the receipts to prove it.
That’s it. What else can I say?
The Passage debuted on Fox this evening, the first reason Jen and I have had to sit in front of the television and watch network programming together in, oh, I don’t know, 5 years? (Football doesn’t count). Verdict: This version is to the original book as the TV miniseries was to It. The writers jammed so much of the setup into one hour, I didn’t stop to give a shit about any of the characters they introduced. Several rather important characters were removed. The actors did the best with what they had, but the direction is stilted and feels like they shot it all in two days. This would have been a prime candidate for a multi-season Game of Thrones style cable series, instead of boring fuckery like Westworld: season two tanked, in retrospect–where they could have opened things up and slowed them down to tell the story. This is network pap.
All told we got about 5 inches. Finn is off from school today, accompanying me to my oncological checkin this morning. Right now we are sitting on the 10th floor of the Viragh building in downtown Baltimore waiting for my blood draw.
Last night I was in a giant bowling alley with my family, celebrating the holiday at our company Christmas party.
One year ago yesterday, I was recovering from cancer surgery to my abdomen, facing down recovery and more chemotherapy.
I didn’t really have a lot of time yesterday to reflect on how lucky I am to be here (and have less time today) but goddamn, I’m happy to be alive.
I got a little bummer news at work this week; one of my long-time employees is leaving us at the end of November for a great opportunity elsewhere in D.C. She’s been with us for three and a half years, and while I always am aware that no job lasts forever, I’m sad to see her go. She was nervous about telling me, but I assured her I was happy for her, and I wanted only the best for her and her career. At the same time, I was able to get another of my designers switched over from contractual to open-ended employment after over a year with our organization (long story), so we had an upbeat Friday after I gave her the good news. We’re planning a farewell sendoff/celebratory dinner the week after Thanksgiving, and hopefully she’ll keep in touch after she gets settled in the new gig.
As reported here, the Scout meetup went well. What didn’t meet with success was my visit to the alignment shop to install caster correctors; after waiting across the street at a Starbucks for three hours I walked back over and was told the mechanic tried for two hours to get the spindles off my steering knuckles with no success. Rather than break my truck, he backed off and told me he wasn’t charging me anything, which was solid of him. At the meetup I talked to another friend who had the same work done, and he referred me to a older mechanic in Dundalk who loves Internationals and may be able to help me with the situation. I’d much rather drive to Dundalk and work with a greybeard than a 22-year old tweaker at a 4×4 shop, which is what I was faced with before.
On Saturday evening Jen and I met up with a cancer buddy, a real nice lady who we met in during radiation treatment at Hopkins. She was in for radiation on her larynx and our schedule overlapped for the whole time I was in treatment, so we got to be waiting room buddies. We’ve all connected on Instagram and she’s recovered stronger than I have. We met up at the Guinness brewery and she gave us big hugs and we sat at the bar and caught up. So far we’re both one year clear and we celebrated with some dinner and laughs. It’s inspiring to see other people kick cancer’s ass and keep moving forward.
The shelf project is going well; I’ve got fronts and sides glued and tacked on to the MDF. Now I’m sorting out how to hang the hangers on the wall with the most support possible; what I’ve got are T-shaped brackets with two holes on either side, about 4″ apart. That’s enough to anchor one screw into a wall stud, but the other screw–4″ away–will be going into plaster and lathe. I don’t feel comfortable with that yet. I did buy a cheapo Harbor Freight drill press so that I can drill the holes in the shelves straight and level, but the bracket question still needs to be solved. [Sips beer and thinks…]
Speaking of beer, I tapped my session grapefruit IPA on Sunday evening, and…it’s not bad! The hops are definitely stronger than the real recipe but balanced out with the grapefruit, this isn’t a bad beer at all. And it’s great to have something on tap again.
Tomorrow marks a pretty important milestone: a year ago I started chemotherapy for my cancer. For my family and I, it was a long walk into the unknown. I had no idea how it would impact my day-to-day life and health, or if it would hurt, or if I’d be barfing all over the place every five minutes.
Jen and I took an early morning walk last week at the beginning of the first real cold snap, and it made us both think of chilly, dark trips downtown to be at the chemo ward when they opened the doors. That was a major strain on us, on Finn, and on our friends, who were gracious enough to take her in every morning to make those trips possible. I don’t miss those mornings at all and I’m sure my family would say the same.
Chemotherapy is like visiting a closed country for a lot of people; you hear bits and pieces of stories but rarely do you get first-hand knowledge from a fellow traveler until you’re already there. And of course, it varies from person to person depending on what flavor of the Big C you’ve got.
Hopkins had a very pleasant chemo ward when we were there (well, the ward was nice; the waiting room was no better than the DMV) set up with little pods where patients could lay down while being treated. Apparently now, since they’ve moved the entire cancer operation over to a new shiny building, it’s even nicer (my last checkup was over there, and the place is like a museum, in a good way) but I hope I never have to compare the two first-hand.
The process of infusion was pretty anticlimactic in my experience. I’ve said before that my radiation treatments were harsher than the chemotherapy was, and it snuck up on me quickly toward the end of the second treatment cycle. We went in, I laid down, they hooked me up to a weird pump, and we hung around for a couple of hours. I did find that the idea of food got sketchy around the middle of the week and there were certain foods I did not want to think about at all. In this respect I can say that I have some small understanding of morning sickness; where once I had a cast-iron stomach, the mere smell of some foods was enough to make me feel like puking.
I hated being hooked up to all of the pumps, especially when radiation poops set in, and I’d have about 30 seconds to hustle my ass to the bathroom before the dam burst. Doesn’t sound too bad at first, but after the fifth time in five hours it sucked. I hated being dependent on those beeping, grunting boxes and all of the fucking tubes strung between us like tangled headphone cables. I hated the smell of the cleaning solution they used in all of the rooms, and the stink of the chemicals most of all, especially as they leached out of my skin.
I still have souvenirs from my experience. There’s still a port embedded in my chest, which comes in handy for blood draws and random visits to the ER, but looks gross and hurts when it rubs under the strap of a backpack. The odd numbness in my right kneecap is still there, and most likely never going away. I’m still taking Eliquis to avoid any clotting and will probably continue for the foreseeable future, even though my resting blood pressure is already low enough to cause alarm to unwary nurses.
But my hair is back, and my strength with it, and I’m optimistic for the future. I feel good right now, and I hope that continuing scans come back clean so that I can live life to the fullest, grow old with my family, and continue learning how to be a better human.