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Wednesday, June 29, 2022

Alive and Kicking

Over the years, I've followed a number of blogs by fellow myeloma patients who I can relate to or who have interesting or informational stories to share. Writing is a good way to vent, share, cry or laugh...in a relatively safe place. Also over the years, I've become friends with a number of patients. It's that common thread. But, the sad truth is that myeloma patients still die. It's still incurable. 

I'm still stable and cruising along. Umpteen gajillion years since my diagnosis and half as long on Darzalex and Pomalyst. 

So what happens is, if someone doesn't post or share for a while, we get worried. I have a good friend who I met at Dr Phan's. We'll comment to each other if we're wondering about someone. If we see that someone has finally posted after a while, we'll let each other know. Such a strange phenomena isn't it?

All of the above is to let folks know I'm alive and kicking. My myeloma is in a good place. Why does this regimen work so long for me when it doesn't for others? Hell if I know. Luck of the draw? Some grand design? Nobody knows. We do know that myeloma is such a different disease for everyone. There is no one standard treatment that works for everyone. 

While my disease is stable. A gajillion years of treatment and steroids is playing roughshod on my body. My skin is that of a 100 year old person. Bleeding and bruising non stop. We're gonna do a bone density test soon, to see how I'm doing with osteoporosis. A bad back has pushed me to need to know my bone conditions. How we treat the back depends on my bones.  Steroids have played havoc on my bones, in addition to my emotional state. I've begged to drop steroids completely. I haven't gotten the ok, but we have lowered them.

Lastly, I'm finally changing to FasPro, an injected version of Darzalex.  For years I didn't mind the 5-6 hours, once a month, in the infusion chair for my treatment. It actually was a bit of a relaxing, reprieve from the real world. I no longer can sit still for any long period of time. I get uncomfortable and super antsy. This I chalk up to chemobrain and the impact of so many years of treatment on my body's functions. Not scientific. But when you know, you know.  

And that's all I got. Looking ahead: I can guarantee I'll soon be making my annual Vikings to win the Super Bowl bet. Almost 30 years making this bet. Not a single time winning. And this is about my only guarantee.  Stay well and healthy everyone. 

Last years winner loser:







1 comment:

  1. Greetings, Matt.
    I've been on Darzalex for the last year and thus far it has been working for me (it's 2.5 years since diagnosis). I have a subcutanous injection once a month (and a lovely nurse comes round to our farm to do it). Dex ruined me too, but now I'm on just 7g per month and it's manageable.
    Whether or not you're lucky in staying alive, I find that the state of my spirits plays such a part in my progress. I've had a lot of prayers and healing from friends too - I'm lucky in that regard. Though I have also been a wholefood vegetarian for 50 years, doing meditation for 40 and other things too, including a quite meaningful and full life - and this has helped me, and my doctors often say I have the best results they've seen for ages. One consequence though is that I think they dose me too high.
    But keep your spirits up - however that works for you. If your spirits are up, you can handle everything better. But if you get worn out and lose heart, things can go down, and acceptance and a 'smooth landing' then start becoming the main issue.
    I noticed your blog on 'Feedspot Today' - I do a blog called 'Notes from the Far Beyond' which cropped up on the same e-mail.
    God bless, matey, and greetings from Cornwall, UK.
    Palden Jenkins

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