I got bloodwork back this morning, and some things are looking up and other stuff is kind of meh. White blood cell counts are rising slowly, but not where they were 10 months ago. Lymphocytes spiked to almost where they were in 2017 before radiation and chemo—a good sign. However Neutrophils are back at their 2019 levels, and red blood cells and platelets dropped slightly. When I see my oncologist in October for the 4-year checkup, I’ll get some more information on what all this means.
Put this on the list of stuff I kind of already figured: Vaccines won’t protect millions of patients with weakened immune systems.
It’s unclear how many immunocompromised people don’t respond to coronavirus vaccines. But the list seems at least to include survivors of blood cancers, organ transplant recipients, and anyone who takes the widely used drug Rituxan, or the cancer drugs Gazyva or Imbruvica — all of which kill or block B cells, the immune cells that churn out antibodies…
I’m not parading around French-kissing strangers, but I’m obviously going to keep wearing a mask until I see that my white blood cell count is back up.
This morning I’m sipping some coffee on the 10th floor of the cancer building at Hopkins, waiting for an appointment with my oncologist. The building was being erected while I was going through chemo, and I think all of my subsequent checkups minus two have been in this building. The old cancer center was a retrofit of existing buildings, and so it was smaller and darker and had that mid-70’s vibe that can’t be fixed with a coat of paint and updated furniture. The new building is big and spacious, has windows everywhere, and it’s clear they thought carefully about the needs of modern cancer patients when they organized it.
For checkups I have to forego eating or drinking anything before the CT scan, so I walk in to the phlebotomist’s area already low on power. After giving blood I head upstairs to the CT floor, and they give me two bottles of iodine-spiked water to drink after asking me five times whether I’m allergic to contrast or not. The iodine has actually gotten better over the years—it used to be two liter-sized bottles of terrible-tasting limeade pisswater; it’s now down to a pair of 16-ounce bottles that barely taste like anything. They put a second IV in and take me back to the machine, where I lay down on a chute, pull my drawers down to my knees, and a primary scan is taken. Then the nurse pushes contrast into my veins through the IV, which feels like the hottest hot flash ever combined with an urgent need to pee my pants. They take the second scan, the nurse removes the IV, and they send me back outside.
I then head upstairs to the 10th floor, where the café used to be, and stake out a chair along the wall facing Baltimore. It’s pretty quiet up there so I can lower my mask and guzzle coffee and breakfast. Presently, the iodine and contrast want to get off the bus, so I head into a spacious bathroom stall to take care of business. This is usually a multi-step process, and so I am grateful for the 2-hour interval between CT and my checkup meeting.
While waiting, I charted out my bloodwork—the results were back within an hour and a half and posted to my online health portal; modern medicine is amazing sometimes—and it looks like things are generally trending downward across the board. My white blood cell count is back to where it was in July of last year, which is discouraging. Platelet count is up, Neutrophils are up, but absolute neutrophils are slightly down and lymphocytes mirror the white blood cell results. The radiologist did not find any new travelers, though, and my lungs look clean, so there’s that!
Meanwhile, I’ve got a bandage on my chest from the removal of a basal-cell carcinoma yesterday; from what the dermatologist told me, it was most likely kickstarted by the radiation I got and then stopped cold by the chemotherapy. Now that I’m getting (somewhat) healthier it decided to pick up where it left off, and I got it removed. Getting older is lots of fun.
Yesterday was my fall cancer checkup in Baltimore, so I drove in to Hopkins for a CT scan and consult with my oncologist. Everything looks OK on the scan, and my bloodwork is trending upwards—I’m still not in the normal range for white blood cells but I’m knocking at the door for the first time since 2018.
My stamina has reflected the low blood cell count; I’m still not at my pre-cancer ability to crank on house projects for two days straight, but I can go for about 4-5 hours solid before I have to stop, and it takes me most of a Monday to rest up before I feel back to full strength. This is all good news, though, and I’m going to continue to push myself in the belief that the work I’ve been doing is making me stronger.
I put a mask on and went in for some long-delayed bloodwork last week, as my March cancer check-up was done via teleconference. We got the results back and while they’re not dire, they’re a little discouraging. Most of my levels are either holding steady or slightly lower than they were in October—most importantly my white blood cell and lymphocyte counts.
I’m a little confused because I feel like I’ve been healthier in the last four months than I have been in years—we’re eating home-cooked meals, I’m walking the dog a mile and a half every day, and my stress levels are lower. I wonder what the difference is and why it’s not reflected in the labs.
I drove to the Howard County General Hospital yesterday for a CT scan and my regularly scheduled cancer checkup. I was, understandably, nervous about driving downtown to the main Hopkins campus, so I’d been in contact with my oncologist the previous week about where to meet. We shifted everything to our local hospital and scheduled a video chat for the consult. The CT went fine but neither of the labs had any record of my paperwork, so I couldn’t have any bloodwork done. However, the scans all came back negative for any new passengers, and the video conference went pretty well other than video issues on his end.
I drove into Hopkins this afternoon for my checkup. After a little mixup with the phlebotomist (who thought I still had a port), they took some blood and sent me upstairs to the imaging floor where I drank some shitty contrast that made me feel dizzy, and then laid down for my scan. Because the blood draw backed everything up I had about 10 minutes to run up to the café on the top floor and get a sandwich and some chips before running back down to meet the doctor—but not before the contrast all came out in a hurry. Boy, I don’t enjoy that.
The word is that my oncologist didn’t see anything funky on the scans, and my numbers are all slightly higher than they were in July—at about the same rate of climb during the last interval—so everything looks good. The radiologist will let us know something specific and the doctor will leave a message for me tonight.
That makes 22 months clear. I think on December 18 we’ll have to find a way to celebrate.
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.