Friday, March 13, 2020

What a long strange trip it's been

sometimes the light's all shining on me
Other times, I can barely see
Lately it occurs to me
What a long, strange trip it's been

-Grateful Dead


Let's get down to brass tacks. I'm at my #darzalex infusion today. 3.5 years on the current regimen and it's working like a charm. My latest labs look good. I was wondering how they'd be, especially my kidneys performance, given I'm eating and drinking just about anything in sight. I do need to go back on modified kidney diet. Overall though I feel pretty pretty good.

Yesterday, I listened to the people around me and decided I wouldn't fly to South Carolina the end of the month for a friend's memorial. Gary was like a brother to me, and he was a Kilimanjaro teammate and example setter. He got a secondary cancer resulting from myeloma-related  radiation a few years ago. Really heart breaking. But I don't think I can risk getting on a plane with my low immune system. White blood cells are good, still below normal range though. My IGG is below 300, low. And I just learned today that a darzalex patient's IGG may be impacted by the drug. So my IGG and immune system might be lower than what the labs show.

In 6 weeks I'll hit 9 years with myeloma. Typically I acknowledge and celebrate every annual anniversary. I think I'll skip the celebration this year.  I'm instead waiting for 2021, when I hit 10 years and turn 60. That is amazing. 2020 so far has a been a year of loss and heartbreak. I don't even want to list them all. We are definitely still mourning the loss of Gracie. Our house and our lives are so different without her.

I am currently reading Wild and it's got me wanting to do some kind of thru hike next year in celebration of my milestones. Superior Hiking Trail in Minnesota perhaps?

Ten fucking years. I never would of thought I'd get this far. I also never would of thought I'd fly through my 50s. I am so ready for them to be over. This journey has been humbling. And tough. I've had ups and downs, and everything in between. Actually some good things have come from this, but overall these years have sent me down a side path that contains fork after fork in the road. So much for my dream from 11 years ago of having a high rise on the Vegas strip and Chrysler 300 with the groovy clock in the dashboard.

So far Medicare hasn't been bad. With my Medigap supplemental plan, I'm not paying a whole lot for treatments, labs and all that. For prescriptions though, I have a Part D plan. Thank goodness. A month of Pomalyst costs $19,000. Even with my Part D, my share is $900.  Thanks goodness for financial assistance programs.  Two wonderful and helpful organizations are the Leukemia & Lymphoma Society and the Healthwell Foundation Nonetheless when the bloody hell are Senate and Congress going to discuss and act on Oral Parity? We're beyond saying it's time. It was time years ago.

After treatment today, I'll go home and pretty much stay away from people. Fun, right? Nope. And that's all I got. Stay safe and well everyone.



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3 comments:

  1. Glad to hear the Dara is still working. Always enjoy your posts.
    David

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  2. So funny you mentioned the Chrysler 300 and the clock. I almost bought one years ago. I was (almost) willing to pay anything for that car, just because of the clock! Then my husband's clear thinking won out. :(

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  3. When CoronaV is no longer a threat... if that ever happens lol, we will celebrate our MM anniversaries and big birthdays. Yes, 60 and 10 years is BIG. Just hit that as you know, but I never was really able to celebrate it, so we will together!!! Glad you didn't fly Matt, and with the explosion of CoronaV, bet you're glad you didn't either... So sorry for your friend. Which secondary cancer did he get, if you can share (or P.M. me). You and Leslie stay safe, and go rescue someone from the shelter needing you :)) xoxo

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Updates in Myeloma from Cure Magazine

 Some good information here.