Monday, March 7th, I shared my frustration after discovering my multiple myeloma was back and active:
Good Bye Near Normal–Hello Inconvenience & Waiting!
Since then I have received a half dozen inquiries about my health and asking how I’m doing. Has it really been almost three weeks since I let everyone know how I’m doing?
Even though this is technically my blog, I don’t view it that way. I started it to help share what I learn about multiple myeloma with my fellow patients and caregivers.
So please forgive me when I get caught-up in everyone else’s story and forget to tell mine.
Heck, that’s why I started a second myeloma related site, Myeloma News.com… So I could spend more time sharing my thoughts and details about my ongoing treatment as I battle my first relapse.
By the way, I just posted two important links there–one to a story about how myeloma plasma cells develop resistance to Revlimid–and another to a U.S. News and World Report story about how researcher’s have successfully mapped the myeloma genome.
See how easy it is for me to get side-tracked!
Maybe what I need to do is give my journey a name. You know, like CNN, Fox or the Today Show always do. Names like “Egypt in Turmoil” or “Disaster in the Gulf.”
I know my story isn’t that dramatic. But if it helps other patients know what to expect and navigate through their own multiple myeloma mine fields–and helps keep me focused enough to report my progress regularly–then maybe its worth a try.
Since it has been so long, here are a few excerpts from my last health related post:
Ready or not, here I come! After years of “near normal” living, I can literally feel myself being sucked-back into a world of tests, specialists, inconvenience and waiting. Lots and lots of waiting.
… My myeloma is active again. A PET scan located seven or eight “hot spots” in my hip, pelvis, ribs, sternum, cervical vertebra and skull. After a brief consult with a hematological radiation oncologist, Dr. Tomblyn, and a meeting with my myeloma specialist, Dr. Alsina, Pattie and I made the decision to proceed with radiation therapy on my hip, to be followed by a new, aggressive induction chemotherapy regimen, all culminating in a stem cell transplant sometime in June.
… The sober reality of this finally hit me over the weekend. Two appointments this week. Two weeks of daily radiation, followed by the Velcade IV’s. Three days of pre-transplant testing at Moffitt. Four to six weeks in Tampa for my SCT; then two, three or four months of post SCT recovery.
Its official: My cancer is back, and I have been sucked-back into the medical twilight zone!
So how am I doing now? Not bad. Thanks for asking!
I will admit I was a bit apprehensive about starting radiation therapy again. I got really, really sick while undergoing radiation four years ago. Last week I experienced a few headaches and a jumpy stomach after my first three or four visits. But after seven radiation exposures, my body seems to have adjusted. Of course, this time they are only radiating one spot in my hip, not multiple lesions located close to my major organs and head. I’m also not taking dexamethasone daily.
Everyone at the Florida Cancer Institute near my office seems nice. My local radiation oncologist, Dr. Bishay, is careful and measured. I have seen her twice since I started.
I have five appointments to go, plus a follow-up. Next week I will drive one hour to Moffitt Cancer Center for a blood draw to establish a bench-mark prior to starting my RVD (Revlimid, Velcade, dexamethasone) chemotherapy a week from Monday.
For now, no Revlimid until after my radiation sessions are complete. At least I’ve got that going for me!
After two, three week cycles of combo chemo, I will return to Moffitt for more blood work. Three days later, back to Moffitt to see my myeloma and transplant doc, Melissa Alsina. We will discuss how my heavy duty induction therapy is working and whether any changes need to be made.
That’s a lot of driving. But we all agree it is important to be consistent and use the same lab whenever possible–especially as we get ready for something as heavy as a stem cell transplant.
But what about that name? What should I call my journey from first relapse to transplant? How about “Journey from First Relapse to Transplant.” No, wait. Let’s shorten that to “First Relapse to Transplant. I like it!
Not a bad title for the second book some of you want me to write about my multiple myeloma journey. I’ll get started on that in my spare time…
Feel good and keep smiling! Pat