New Chapter, New Identity… Same Life, Same Challenges


Surprise! Did you see I posted a few days ago?
Be sure to scroll down to my other posts, as I reflected on my 7 year Stem Cell Transplant anniversary, on 2 very symbolic days for me:
July 2, I was admitted to City of Hope to begin my first (and only) Stem Cell Transplant
July 5, the day my own stemmies were infused back to me, restarting and regenerating my chemo and myeloma ravaged body.

Yes, 7 years of myeloma invasion this 2017. Happy 7 year SCT anniversary-birthday to me. On one hand I marvel I am still here. On the other, “of course I am”, I whisper to myself. I must be. I have to be.

Moving forward, I had my 14th Darzalex infusion this past Monday, and I’m doing ok. I tend to “crash” on day 3, 4, 5, 6. Combo crash from Dex steroids and Darza, while the Pomalyst side effects carry on for the entire month lol. It starts with extreme fatigue, feeling bloated from Dex (I think), then light headaches, dizziness and achy skin. I stay close to home on these days, as I never know what my GI side effects might be, but fortunately, nothing like the extreme surprise volcanic reactions I had from Revlimid, and infrequently, Kyprolis. It’s interesting the “bargaining” we do regarding side effects. There are days I wish I could “go”, then other days, wishing I would stop “going”. Days where I am so achy, I don’t know if it’s side effects, or I’m getting a bug. Not sure which is worse. Then the numbness and tingling from the Neuropathy. And the fatigue, the absolute lack of “helium”, is just so debilitating.

I’ll take my myeloma marker labs next week, and know my status on Tues July 18, which is also my 15th Darza infusion. Will be interesting to see my numbers, as my infusion schedule is off several days, due to all my retirement events end of June. I do worry with the every other week Darza protocol, as I am skeptical about the monthly protocol coming my way in the future. But the years of research trials and studies determined the infusion schedule, so we’ll see how it affects me personally. I just wish for treatment consistency… but that’s not myeloma’s reality. Myeloma’s reality is continual treatments, successes, refractory, new treatments, refractory, repeat, repeat, repeat…

And so… I’ve been “retired” for a week now… certainly not the “retirement” I thought my retirement would be. I’ve let go of a lot of plans and dreams… I accept. It is what it is. Always reminding myself: “you can’t control the things you can’t control Julie”… I remain so grateful for all the good things in my life, past and present, and for this 7 year anniversary that almost wasn’t… 

Maybe one day…

Maybe one day…
 Thanks for reading and caring. Hoping your summer is full of fun and happy times! 
Live happy,
live well, and make a difference somewhere, somehow, with someone or something
as often as you can