In which I get some goodish news and some decidedly bad news. I also have new related symptoms. Yay!
Bit of an interesting 24 hours. I woke up about four thirty am unable to breathe. It was like a band of metal around my chest. I lay there for a bit quietly hoping it would go away, but it didn’t.
I then woke up Jo and she came and sat with me. I found an ok position but it was really painful, so we called 111. They went though a list, and then we got a call a bit later from the local team.
Long sorry short, looks like some kind of anxiety attack that him me when I was asleep. I have only ever had one before, over ten years ago, so this was odd. (Turns out I have been overdoing it by a lot more than I realised, more about this later).
Anyway it eases off about six. Since then, and all of today, I’ve had a really painful chest unless I’m flat on my back, I think I pulled a ton of muscles. At times it was close to my limit, but once I found good positions for it, it dials down a lot.
So anyway I called up my gp and got an phone call and at that appointment, also got my blood test results. Bit of a double whammy or a day. We discussed my other condition first, the breathing one, and she was brisk. Then when we got to the other one she was super sympathetic and sad for me. I preferred the brisk.
For those of you who remember, I was concerned about my white cell count. During my episode of illness last year, for about a week, it spiked from 31 to 48.5. Marginal Zone Splenic Lymphoma mostly has a slow path, but in about a quarter of cases it gets turbo charged, and this can happen at any time. So I kind of held off getting my tests.
Likewise my platelet count has been dropping, down from 136 in June to 118 in December. Anything under 150 is low, and if you get between 50-75 you need to think about treatment. Incidentally of you get below 50, or closer to around 20 you can spontaneously bleed, And don’t even think about being injured. Due to, you know, not clotting. I’ve been trying to keep this up with lots of red meat, and leafy greens, but probably haven’t cut out what I needed to.
So these were the two things I was concerned about. First the good news. White cells held steady. 10 months and they went up from 48.5 to 52. Treatment is often cited as when you need it (or around 100).
Then the bad news. Platelets have plummeted from 118 to 73, or 4.5 a month. At that rate I’m in the danger zone in about 6 months time, give or take. So looks like I’m going to need treatment soon. It also means odd bruising (which ive had, along with that bug bite reaction).
I messaged the prof and we have a call set up for Wednesday, so I’ll find out more then.
One more new kink. My alkaline phosphatase serum level has increased from 80 in June, to 81 in December. This time it now sits at 146.
Over 140 is a concern and this metric looks at liver function and how it’s working. This is tied in with my condition and my platelets, or lack thereof, lead me to be unsually suceptable to quinine, aspartame and… Alcohol. So best guess is my liver is responding to the gin and tonics and rum and lemonades I enjoy. So looks like I’ll have to stop drinking for a while (especially gin and tonics). I should also eat more organ meat, leafy greens and orange juice. So liver and broccoli coming by way (sorry Jo, who is a vegetarian).
The GP was also more than a little surprised by how much I was doing, physically. Grace went to school so this week ive walked her in, and walked her home every day. It’s about a 3.5 mile trip for both in and out. I’ve been knackered afterwards and take about an hour to recover. Turns out this is due to platelets and not only should i feel more tired in general anyway, but I’ve been overdoing it and she was surprised if been able to do it at all.
Hmm. So we will drop this to one drop off in the morning, and see how that goes.
So all in all. My chest still hurts, I’ve been laying flat all day pretty much. Going to need treatment soonish (anyone want to give me platelets… No?). Joking aside I’ll find out the options on Wednesday. This could be drugs to increase platelets. Splenectomy (finally) or ritumaxib (chemo). Negative of the second two are a suppressed immuno system leaving me even less equipped if I get covid. So not ideal really.
Slight silver lining is that my core condition, the one that is actually the main one and causing all these side effects, is pretty stable. So we’ll take that as good news. Still looks like my ten year goal no treatment is going to miss. It’s been 7 and 3 months. Still holding steady for the 10 year survival one though, which is at 50/50 for the condition. Treatment dependant. I’m a big fan of hitting goals, especially at work where I treat my sales goals as if… Ny life depended on it. :P. No? Too soon?
Anyway hope you are all well. Let’s hope covid doesn’t show its face to complicate things further.