I’ve toyed with saying anything about this on my blog (or elsewhere) because it’s just one of those things. It’s personal and there is still a lot of uncertainty and I don’t want to look like I’m searching for sympathy or concern or anything like that (because I’m not). But I take a small amount of pride in this being my blog and that I’ve covered a lot of personal issues on this blog over the years. It’s part of blogging to me, part of social media … it’s about being human and being transparent and sharing both the difficulties and the pleasures of life. (at least those I can share in a public space)
On Monday, I’m getting a bone marrow biopsy. Here’s why.
Early in 2019, I developed a rash that was accompanied by inflammation. The rash was typically on my elbows, arms and torso, with occasional hot spots on the bottom of my feet and a few other places. Sometimes I’d have rash in the exact same spot at the bottom of each butt cheek. The inflammation was in my hands and fingers and occasionally on my face — primarily my eye lids, lips, and tongue. The rash was pretty much constant for the next six months, showing up here today, showing up there tomorrow. Occasionally I’d have a few clear days when I took Zyrtec, but invariably it would come back until I took Zyrtec again. The inflammation was another thing … less frequent, but when it showed up on my face, it would … move around. I can remember once instance when I woke up with one corner of one of my lips swollen. During the course of the day, the inflammation traveled all around both lips. Fun stuff.
At the time, I went to see my GP. He did the standard lab work, which was all boringly normal, and referred me to an allergist with the advice to moisturize and the statement that it was an allergy and they’d likely never figure out what I was allergic to. The allergist looked at me and the results and basically said the same thing.
After six months, the rash and inflammation more or less went away for the next 18 months. But at the beginning of this year, right around the same time of year the rash initially started, it showed up again. Rash and rash and rash and rash, swollen fingers, tongue, lips and eyes. And this time, taking Zyrtec didn’t seem to do much to calm it all down. My GP (a new one since the old moisturizing one retired) referred me to Dermatology. They did a few things, including a punch biopsy, and threw up their hands, referring me to allergy.
Right back to the allergist who didn’t do much of anything the first time I saw him. When he asked me why I didn’t come back to him when the rash came back, I told him that the last time I saw him he didn’t seem interested in finding a cause so I didn’t see the point. It was a great start to the next stage of this little adventure, right?
But the good news is that he took my frustration at that initial experience and dove in further than he had the first time. He ran more tests, searching for more obscure things that might be causing the rash/inflammation. All of those tests came back boringly normal, except one that showed I had a slightly elevated tryptase level. Tryptase is similar to histamine and can be triggered by our immune system to fight … something.
The elevated tryptase took the allergist down a couple of new paths, all of which resulted in no significant findings, leaving one unturned stone. He suggested I get a bone marrow biopsy to rule out blood cancer, which could be the cause of the elevated tryptase and rash. As he explained it, and later the hematologist also, some blood cancers stay in the bone marrow so they don’t show up in any of the other tests. But blood cancer in the bone marrow can trigger one’s immune system, trigger tryptase, and basically … be cancer.
I saw the hematologist a week or so before Thanksgiving. He recommended the bone marrow biopsy. I told him I wanted to think about it and wait until after I got back from Florida to schedule it. Neither the allergist or the hematologist seemed incredibly concerned and the hematologist didn’t see any issues with waiting a few more weeks. When we returned from Florida, I scheduled the biopsy and it’s now four days away.
There are a couple of reasons to be optimistic that this is not blood cancer. First, the rashes and inflammation completely disappeared for 18 months before reappearing. Second, about six weeks ago, I started religiously taking 10 mg of Zyrtec every morning and night. Since I started doing that, the rashes and inflammation have gone away almost entirely. (Odd thing is that when I had a head cold upon our return from Florida, the rashes returned for 5-6 days before going away again.) The hematologist believes that those two facts — the 18 month disappearance and that Zyrtec is managing the rash — are good indicators it’s not blood cancer. But he still thinks it is necessary to rule it out and the only way to do that is with the biopsy.
To say I’m terrified would be an understatement, but the terror has more to do with the procedure than the possible results. Everything I’ve heard about bone marrow biopsies is that they are not fun, that they are very painful. I’m totally not interested in that. I’ve had a couple of very difficult, painful medical procedures in the last 10-12 years. I don’t need another one.
Beyond that terror, I’m relatively unstressed about this. There’s a bit of “it is what it is” going on in my head. There’s also those reasons cited above. Cancer doesn’t just go away for 18 months without any treatment or anything else, right?
So, that’s the update. I’m gonna go a bit quiet around here until this is all over and I know what the results are and, depending on those results, what comes next.
Meanwhile, Happy New Year to you all! Make 2022 the best year of your lives.