I know I have been putting up boring health stuff. Whining "Oh, my back! Oh, my numb extremities. Oh, woe is me!"
Well, it's about to get a little more exciting. The doc finally found the reason. It's the Cansker!
Don't you just hate it when the doc says a word with 'Oma' in it?
Well, I'd blog about my chemo journey for the next 3-5 year then die, but, despite the back pain the good news is it isn't myeloma... a death sentence.... like we were first worried about a couple weeks ago. It's merely Waldenstrom's disease. Which is Chronic as opposed to Lethal. A form of Non-Hodgkins Lymphoma.
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Ok, wha happa?
Part of the whole neurological stuff involved extra fancy blood-labs. Be sure it wasn't Lyme disease causing my trouble up to now, plus a whole bunch of other stuff. Semi-uncommon checks. One of them is for something like Immunoglobulin M. High normal for that is 175 units or so. I was at 2700. Huh. That's funny. (the other out of normal items was mostly me being fat and at high normal, but not way out of range. I don't have the Diabeetus.)
So, off to the Hematologist. Blood doc. And he's also an Oncologist, but no one told me that...
That's the guy that said the oma word. Myeloma. A form of bone marrow cancer. Which jibed with back pain. But the PLETHORA of MRIs I have had recently show no cancerous voids in my spine. Which is good.
"Sheesh, T-bolt, that really sucks, otherwise."
Naw, it's just lymphoma, Just 'watch it for a while, see what develops, and THEN we have a chance to attack it with treatments'. That's where we are after even FURTHER blood workups. So... Phew. Keep treating the back pain with anatomical interventions. It might be wholly divorced from my lymphoma.
Here is one thing. My grandmother and her brother? They were about my age when they died. I was told lung cancer, but... it was lymphoma. Well, dang. Shoulda mentioned this sooner, Ma.
But no chemo, now, like I thought.
"Don't act so disappointed, T-bolt."
Naw, naw... it's just that... that would provided a bit of blog fodder. Plus a 3-5 year life expectancy for a week really focuses the mind. I tell you what.
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"Aren't you worried about privacy, T-Bolt?"
This is a BLOG. No one reads these. I've already informed my family. No one at work reads this. Maybe 8 people that read this post know me in real life, and they are all cool. Or they better be.
"Do you need any help, T-Bolt?"
Naw. If and when chemo starts I won't even need a ride. And I got insurance through work.
"So what will the progression be like? What symptoms do you have now? How long have you had it?"
Shrug. The Doc doesn't even know that. The symptoms now are similar to what getting old feels like.
The neuropathy in my extremities is probably due to it. Lacking energy is another one, probably. My feet get colder, easier than they used to. For a while I just seem to feel older than my cohort peers, but that could just be me whinging. But Immunoglobulin M is a BIG ol molecule and that is the why extra IgM is an issue. Clogging the works. I don't seem to bruise a LOT easier yet, nor have I gotten extra infections or nosebleeds. My spleen may eventually be a goner. But not today.
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This also means all y'all gotta wear a covid mask whenever I get within 100 feets of you. So you don't kill me since I have a compromised immune system. ARE YOU TRYING TO KILL ME?!!
Just kidding. I'd kiss you on the mouth. Today, or 9 months ago. Pucker up, Ima comin'! Like an unsupervised Joe Biden!
15 comments:
Well, as you say, it could have been a much worse diagnosis. I’ll say a prayer for you. Keep us posted.
Yes, it could be worse. But anything that is *.oma is serious shit. Some are more seriouser than others.
I look forward to readying your stuff for a very long time.
This stinks. I have to say that you seem to have a good outlook on things, which hopefully will help.
AKA Waldenstrom's Macroglobulinemia. Rare bird, I never diagnosed a case.
Better when having a rare disease to have one that sounds Norwegian rather than one of those weird Frenchie diseases!
Do well. Being implacably stubborn will help.
TW
Fight hard, Friend. Prayers Up.
I'd have typed out that second word, Pachydermis, but I butcher pronouncing it so I thought better not.
Said a prayer for you. Ultimately, it's the Lord's call, but take as good of care of yourself as you can. Keep blogging, by all means, if not to inform your readers, then to help you organize your thoughts. God bless you.
Stay focused, read the hell out of it and become an expert. Your doc doesnt have it after s/he oes home for the night.
I have same. Started on Imbrivuca now get to sit in a chair every three months with Rituxan drip to keep under control. It is very rare. Quite interesting when your oncologist says “ I haven’t seen a case of this in 15 or 20 years”. My counts were in 7200 range. Lots of fatigue and night sweats. A regular physical caught it then down the cancer chute I went
"This is a BLOG. No one reads these. "
Sure we do. Good luck.
Gerry
Came over from a Borepatch link. The hits keep coming in my health realm too but manageable conditions. Comment from an outsider that did read your blog.
Your courage is an inspiration to the regiment, TBolt.
Hold fast.
Macroglobulinemia is a most excellent word. It means "big globs o' protein in the bloodstream". Kinda sums up Waldenstroms efficiently.
TW
Hey, you can do this. Thrust me, I know.
plumbmaddogmean.wordpress.com
Five years in remission from AML. Email me and I'll send my number if you want to talk.
Tom
We'll be keeping you in our thoughts. My Aunt had the same diagnosis, given six months - she lived many more years passing after she broke her hip at age 94.
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