Here’s my story in pictures.
Some days yes, most days no…
I used to be so “strong”,
but I find continual “pain” debilitating…
So many more diagnosed every day!
Just met another local to me…
Where are you coming from Myeloma?
Forward March Tuesdays-
Hello 40mg Dex steroids, bag of Darzalex, bag of Benadryl, Velcade shot
These are great when I get tired of swallowing pills-
Helps calm chemo reactions, and so amazing-
I have ZERO environmental/food allergies
since my July 2010 SCT!
5 hour Darzalex infusions-
So far so good, thank you premeds
and a fantastic chemo lab staff for smooth sailing
Jr strength used to work out ok…
But these days-
I need to be an “Adult” and up the dose
with Adult strength pills,
as there’s a new side effect in town…
Several weeks ago, Velcade sent me AWFUL, OVERWHELMING NERVE PAIN!
Different than the typical numbness and tingling from traditional Neuropathy..
Hit me 2nd Velcade Darza infusion-
Just unbearable pain like I’ve never experienced
Feels like a PAINFUL skin fever, sunburn or raw skin.
It’s a high fever feeling, but without the actual fever.
It’s the flu feeling without the flu.
Burning sensitive ouchy skin, inside and out.
Clothes feel like needles
My bed is like sleeping on nails
So awful, so debilitating :'((
Stealing my precious time away,
Draining my optimism and strength,
Stealing my days away,
Stealing my life away,
Making me question everything…
Whew! Mondays and Tuesdays Dex to the rescue!
I take 40mg per week,
20mg Mon, 20mg Tues
as premeds for Tuesday infusions
and finally, some overall relief.
It’s amazing to feel a bit like my ol self again.
What a crazy, amazing medication…
And on a happier note:
last Tuesday after infusion-
before my crash-
Alissa brought us this,
Thank you Dex for a day or two of semi normalcy.
Not often though, as I’m back to counting calories-
I’m not going to let
Dex steroids make me chubby!
Me on the one good day
I’ll take labs soon (when the nerve pain calms down and I can breathe and function). Truly, dealing with this new side effect is overwhelming me. I’m not used to 24 7 pain. I’m not used to feeling so awful, so “sick”, for most days a week, every week, every month… Seriously, imagine feeling sick weekly and knowing in advance you will feel sick weekly… so awful. But I endure, as it will be interesting to see how this new cocktail of Darzalex, Velcade and Dexamethasone is attacking myeloma. Trying to tolerate the nerve pain torture, in hopes the meds are pummeling the cancer cells… if not… what’s next?? …
I don’t think I can do this…
live well, and make a difference somewhere, somehow, with someone or something
as often as you can