It’s almost my 9 year Stem Cell Transplant Anniversary Birthday!
Wow! 9 years, July 5, 2010, and here I am, still around to reminisce about it, and celebrate it July 5, 2019!
This time 9 years ago, I had completed 5 months of Revlimid + SUPER HIGH DOSE Dex Steroids (40mg- 4 days on, 4 days off!), bringing my myeloma cancer level DOWN from 70% to 10%. This allowed me to go forward with the Autologous Stem Cell Transplant process. Next up was one IV infusion of Cytoxan, which I got super sick from, hence my concern when starting the pill form of Cytoxan back in Sept 2018. Crazy how I am doing so well on Velcade, Cytoxan, Dex now (altho I was up last night until after 3am with “volcanic GI “cleansing”).
Then after the IV Cytoxan, I had my Hickman Catheter placed in my chest mid June.
Then about 10 days to 2 weeks of Neupogen to “mobilize” those precious stem cells for harvesting (also known as Apheresis). https://www.cityofhope.org/myeloma . I completed the stem cell harvest in 2 days, collecting about 9.5 million cells, if I remember correctly. Half are still in a deep freeze at COH, waiting for me, if I decide to complete another SCT… hmmmm…. probably not….
Around this time 9 years ago I was feeling pretty good, as my myeloma symptoms had lessened, the cancer was beaten back substantially, and I wasn’t on any chemo or immunotherapy or treatment or meds for about a week. I did the most STUPID thing at that time… I had a rash reaction to the bandage covering the open hickman insertion area, where the tubes (lumens) came out of my chest, so I STUPIDLY left it uncovered, thinking “oh gee, the fresh air is good for it”… babajajahhahaaa… so dumb Julie! It was an open wound with the tubes inserted into my chest wall, connected to a main vein! Well I wound up with huge complications in the middle of the SCT process as a result of a staph infection from that… and that complicated the SCT recovery process…. but that’s another story, for another post :))
So this time, 9 years ago, I had a week or so of freeeeeedom from treatment, as my hospital Admission day wasn’t until July 2, 2010. Oh I was so optimistic and naive. I just had no idea the train wreck coming my way. Actually, in the BIG picture of things…. I did quite well, compared to horror stories I hear and read from others. Not that my experience was a vacation… more to come on that!
Here we are, ready to admit me to the 6th floor!
LOL I had no clue…
So July 2, 2010 was Admission and Orientation, get settled in day. July 3 and 4 was High Dose Melphalan chemo. Oh boy… amazing the delayed reaction that has. Most SCT patients think they are doing just fine, as the chemo side effects are many days later… and BOOM, we feel like we’ve been hit by a train, as our immune system spirals down, crashing to nothing, as the the Melphalan chemo is killing and obliterating everything, bad and good. And that’s the whole point of the process. High dose chemo to kill off what’s left of the myeloma, and the stem cells essentially bring us back to life… slowly, after the almost deadly affects of Melphalan!
But I was one of the lucky ones! My SCT was totally successful, and I achieved CR (complete response). It was the septic infection from MY stupidity of not covering the Hickman tubing insertion site in my chest, that almost killed me. I wound up with “Staphylococcus aureus”,
mid way through the Neutropenic crash
That’s a super brief summary of my SCT experience, but here are my blog posts from back then, and also my July 5th anniversaries, with all the detailed details!
(I was such a different writer back then…)
Aaaand there are so mannnnnnyyyyyyyyyyyy more posts!!! I can’t believe how much I have written over the last 9 years! I never thought I’d be alive this long when I started this blog! What a living book this is, and I thank you deeply for your interest in reading my story and hearing about my life, my unanticipated, insane challenges and my grateful joys.
Hope you’re feeling and doing well if you’re one of my myeloma buddies. I love to hear how you are, and what treatments you’re on. As I write (and reflect back on) my story, I can’t believe it’s mine, and I’m sure you feel the same way about your life status too. Wow, 9 years. Never thought all this would be my current story. 70% cancer at diagnosis,.. I really “shouldn’t still be here” right!… and also with all my bone damage, lesions, fractures, plasmacytomas, etc… but my body is currently stronger than myeloma, so here I am, and I’ll continue to write my story until I can’t! So there myeloma, take that!
Next up, labs tomorrow for chemo on Monday.
Then more labs later in the week for my status Dr appt July 8th.
I’ll never get over the crazy “new normal” lifestyle of “living for” my lab results and cellular status. Ok, don’t get in a tizzy about that… I don’t literally LIVE “for” my results, I just excitedly look forward to knowing my detailed health status monthly, and actually weekly too, with my Sunday labs for Monday’s chemo. See, this is one of the “perks” of cancer, specifically myeloma. Being able to know what my body is doing on a deep, detailed cellular level, weekly! I like that. I like knowing. Not everyone does. I do.
Happy summer, happy 4th of July to all my USA readers :))