Hello folks. Spent last week in lovely Little Rock. Several goals, with mixed success:
1. Eat a pizza at Dam Goode Pies. Check.
2. Eat a pulled pork sandwich from Whole Hog BBQ. Check. With volcano sauce, for those completists playing the home game.
3. Good PET scan affirming that the pain in my shoulder is not cancer. Check.
4. Good MRI affirming that the four lesions in my spine have fully resolved, at which point I will achieve what is termed "ACR" for "Arkansas Complete Remission." Ch....uhhh....not so fast. The four lesions (in my thoracic vertebrae) remain unchanged from six months ago, which means they are unchanged from six months before. There is no cancer activity, but until these refill with new bone, they remain a microenvironment where the cancer can restart. I do not want that to happen. My friend BB (not to be confused with the good doctor) recently had a full-blown relapse occur...he was in my same situation: low-risk disease, good prognosis, responding well to therapy, complete remission...and yet his original lesions hadn't fully resolved and one of them started back up again. He now has high risk disease and is refractory to just about everything...although Pomalidomide (next-gen Revlimid) appears to be working, thank God. So...basically I'm pretty bummed that the lesions are still there. Dr. BB prescribed more Zometa and I will have to be more militant about getting it once a month.
5. Good bone marrow confirming the absence of Myeloma. Check. But, uh...something not so great going on. As I'm reading the pathologist's report, I was happy to see 4% plasma cells in the marrow aspirate, 40% cellularity in the marrow, and negative for plasma cell Myeloma. All good. But seems I am NOT so negative for dyskeratosis and dys-somethin'-else, and that means that according to the pathology report I have myelodysplastic syndrome. What is MDS, you ask? Well, remember all those stories about Revlimid causing secondary cancers like Leukemia? MDS is a precursor condition to Leukemia.
Gulp. Not good.
Jill wisely counseled me to calm down until I could speak with BB about it, and although we were both quite worried, we did wait...and wait...and wait. When I saw BB, he got up to give me a hug and asked how I was. I told him I'd be doing better if the damn lesions in my spine had resolved, and I didn't have MDS. He ignored the first part and dove into the pathology report on the marrow.
What he said MOSTLY put me at ease.
"This damn pathologist...first s/he doesn't see this ever and now f***ing everybody's got Myelo-dys-f***in'-plasia!" (note obscured pronoun to protect the identity of the poor pathologist, and barely-obscured profanity to convey the character of my doctor without offending too many people)
BB went through the detailed "cytogenetic analysis" of the marrow which looks at things on a gene-level. He said there is nothing there that would indicate myelodysplasia. He said the therapy itself can make things appear as though there is myelodysplasia simply from the shape of the white and red blood cells. So...yeah...I guess I don't need to worry? : |
6. My finger confirmed as no big deal. Uh....not so much. I saw a different dermatologist who saw the fingernail and said it could be a squamous carcinoma (which could become melanoma) or it might already be melanoma. So I was rushed to a biopsy where they removed half of my fingernail (split down the middle, the right side of my right index finger has no nail) and a chunk of the nail bed (the puffy part of the flesh just closer to the knuckle than the cuticle). It's been a wait and I am still waiting for the results. If it IS cancer, they'll need to take out a bit more. I hopefully won't need to be given the Ronnie Lott treatment!! If it's NOT cancer, then I still probably have to deal with the fact that I may have no fingernail on half my finger, which sounds uncomfortable. But I have friends who have lost the use of their arms from this disease, so I can't complain too much.
Separately, I am growing concerned than my use of Ativan as a sleep aid is interfering with my energy level during the day. I am discontinuing it for a bit to see what happens...other than sleep deprivation. I started at the ceiling last night and got no sleep whatsoever! I know I need my rest...but I also need focus and energy and joie de vivre during the day. Yet another choice in treatment!
Thanks to all of you for sticking with me and checking in to make sure I post an update. I appreciate every one of you!!
