 |
| 1954 Chevy Bel Air. Maybe runs hot, needs a few valves replaced, a little chunky by today's standards, but still has some good lines. Turns over in sub- zero weather. Yes. That's me! |
Annual check-up with Dr. Blood today. Good news is that all those 50- to 100-point fluctuations in my platelet count she considers "stable." She checked my spleen and other blood work and said those seemed fine.
Doc said to continue with having blood draws every three to four months and to call in if platelets jump to 900 or higher (currently my high readings are about 750). She said I should keep taking a baby aspirin every day. She noted that enteric coated aspirin would help with any stomach upsets. Most baby aspirin is enteric coated (look for "E.C." on the bottle), so just passing this along as a tip for anybody else on aspirin regime.
She also said I could stay stable for a period of years, and I'll take that, though, in reality, even the hot-shots don't really fully understand how quickly your ET might worsen or why it might morph into some other disease.
She also said I could stay stable for a period of years, and I'll take that, though, in reality, even the hot-shots don't really fully understand how quickly your ET might worsen or why it might morph into some other disease.
But then things took a strange turn.
I asked whether Doc had a bead on my type of mutation yet. She said she had "thought about" testing me for CALR because my JAK2 was negative. She said that they may be able to determine the mutation from the bone marrow biopsy done last year (?), but if not, to call the office before my next blood draw and they would order the CALR. OK, maybe, because I don't need treatment right now, there's no rush to figure out which mutation I have.
Also, she still considers me at low risk for complications or treatment, even though I am over 60, and most experts put anybody over 60 in the moderate or high risk categories. Why does she categorize differently? Because she says there's nothing magical about age 60, and that the risk factor has more to do with general health than age, even though, statistically, those over 60 do run higher incidents of clotting and bleeding. So, OK, maybe I'm a young 62. I'll take that.
When Dr. Blood asked how I was feeling generally, I reported having increased fatigue, like I'm coming down with the flu or a cold. She gave me a sharp look and said flat out, "People with ET don't have symptoms. We'll have to look at some other cause for your fatigue."
I was stunned!
I know Doc deals with people who have acute cancers and are in dire shape, and probably my symptoms are pretty petty compared to what she deals with most of the time. But you can find countless videos (here's one) in which MPN specialists explain that fatigue comes with all MPNS and at all stages.
Anyway, we talked about sleep as a culprit for fatigue instead of the ET. Clearly I had lost control of the conversation.
I said that I had had some sciatica that had been disturbing my sleep for a few months and that I was going to ask my family doc to prescribe physical therapy because that had worked before. She said that was a good idea because she didn't want to give me pills for the sciatica, that it went against the Hippocratic Oath to do no harm, and blah blah blah.
Once I got to the car, it hit me that the doctor thought I was hitting her up for opioids for the sciatica, which I hadn't even wanted or thought about, much less asked for.
I know doctors have to be careful about prescribing these meds, but why would she think a person who is already really loggy and tired would want an opioid?
I pulled out of the parking lot feeling like the doctor had me pegged as some kind of hypochondriac junkie using any excuse to get the Oxycontin.
So I went to the book store. Bought some Christmas cards that were in marginal good taste and splurged on a cafe mocha and a purple scarf. Not usually a fan of retail therapy, but getting away from the world of medicine seemed to help.
And on the way home, I decided to hell with feeling like a hypochondriac junkie.
I am more like a classic car, let's say a 1954 Chevy Bel Air. Red coupe. White top. A little chunky by today's standards but still some some nice lines. Chrome airplane on the hood that might gut you if you were thrown through the windshield, so not entirely toothless yet. Maybe runs a little hot, needs a few valve replacements, but turns over like a charm when it's 10 below zero. Turtle Wax job and a new set of white walls, and that baby still turns heads if only because she's still on the road after all this time.
Yes. And here's a song by the Bel Airs to go with that Chev. Dig that sax, piano solo, and whammy board at the end.
Be well!
Also, she still considers me at low risk for complications or treatment, even though I am over 60, and most experts put anybody over 60 in the moderate or high risk categories. Why does she categorize differently? Because she says there's nothing magical about age 60, and that the risk factor has more to do with general health than age, even though, statistically, those over 60 do run higher incidents of clotting and bleeding. So, OK, maybe I'm a young 62. I'll take that.
When Dr. Blood asked how I was feeling generally, I reported having increased fatigue, like I'm coming down with the flu or a cold. She gave me a sharp look and said flat out, "People with ET don't have symptoms. We'll have to look at some other cause for your fatigue."
I was stunned!
I know Doc deals with people who have acute cancers and are in dire shape, and probably my symptoms are pretty petty compared to what she deals with most of the time. But you can find countless videos (here's one) in which MPN specialists explain that fatigue comes with all MPNS and at all stages.
Anyway, we talked about sleep as a culprit for fatigue instead of the ET. Clearly I had lost control of the conversation.
I said that I had had some sciatica that had been disturbing my sleep for a few months and that I was going to ask my family doc to prescribe physical therapy because that had worked before. She said that was a good idea because she didn't want to give me pills for the sciatica, that it went against the Hippocratic Oath to do no harm, and blah blah blah.
Once I got to the car, it hit me that the doctor thought I was hitting her up for opioids for the sciatica, which I hadn't even wanted or thought about, much less asked for.
I know doctors have to be careful about prescribing these meds, but why would she think a person who is already really loggy and tired would want an opioid?
I pulled out of the parking lot feeling like the doctor had me pegged as some kind of hypochondriac junkie using any excuse to get the Oxycontin.
So I went to the book store. Bought some Christmas cards that were in marginal good taste and splurged on a cafe mocha and a purple scarf. Not usually a fan of retail therapy, but getting away from the world of medicine seemed to help.
And on the way home, I decided to hell with feeling like a hypochondriac junkie.
I am more like a classic car, let's say a 1954 Chevy Bel Air. Red coupe. White top. A little chunky by today's standards but still some some nice lines. Chrome airplane on the hood that might gut you if you were thrown through the windshield, so not entirely toothless yet. Maybe runs a little hot, needs a few valve replacements, but turns over like a charm when it's 10 below zero. Turtle Wax job and a new set of white walls, and that baby still turns heads if only because she's still on the road after all this time.
Yes. And here's a song by the Bel Airs to go with that Chev. Dig that sax, piano solo, and whammy board at the end.
Be well!
Related: Fatigued? You're not alone
Good to hear that you don't have to take prescription drugs just because you're over 60. I'm 56 and only take aspirin so I'm getting close. I feel tired too. Sometimes it's sleep issues. Sometimes it's a dull achy kind of tired that almost feels like it's down in my bones. It's not severe but I think it is because of ET. The opioid story is kind of sad though. I guess they overly cautious and guarded. It's such a serious problem these days.
ReplyDeleteMy fatigue is a lot like yours. And, yes, glad I don't have to take medication, and overall I feel the doctor knows what's up. But I didn't like being blown off about symptoms, and I don't think she was really understanding what I was trying to tell her. I wasn't going to ask for meds, just tell her what I was doing for fatigue and ask if she had suggestions. But because she doesn't believe ET patients have fatigue, what's the point. Sigh.
ReplyDelete