1: And so it begins

“Bloodless” may not be the most correct term to use for this new blog because I still seem to have plenty of blood. The problem is, my bone marrow seems to have switched teams suddenly and my blood counts have inexplicably tanked.

For a month now I’ve been fighting the diagnosis attached to these damn blood counts.  My health records now list “aplastic anemia” as part of my history, but this too is actually another misnomer. “Anemia” makes it sound like all I have to do is start eating red meat again. (And that ain’t gonna happen – not after almost 50 years of going without!) If you want to be technically accurate, it’s more correctly called aplastic pancytopenia. When it was first documented in 1904 they didn’t have the technology that we do now to examine blood cells at a microscopic level.

So, what the hell, Pat?

At the end of September this year I went in for my annual wellness check. A week or so later I had a standard blood draw and test (CBC) per my doctor’s order. The following night, around 9:30 pm, I receive a call from her telling me I need to go to the emergency department and that I should probably pack a bag in case they need to keep me there a couple of days. Seems my blood counts are all seriously low and they want me to be checked out right away.

Wha???

Hold on, she says. Let me make some more calls.

10:00 pm: “I spoke with the hematologist on call at Medical Center of the Rockies and we feel you can wait until morning.”

Well, that’s a relief… I guess.

Next morning (October 4) I check in at the ED, get blood drawn again. They decide I need a bone marrow biopsy but there’s no room at MCR so we drive to Fort Collins and get checked in to the Orthopedics wing at Poudre Valley Hospital. Joel and I sit there waiting and this amazing nurse (John) comes in looking for the sick patient. “Oh, I’m not sick – I feel fine.” He looks at me sideways, then gets to doing his nurse things, all along keeping an interesting banter going about blood draws and biopsies. He explains what “pancytopenia” means, not knowing that I am a total etymological geek. Pan: across (like panorama, pandemic and my favorite - pangalactic), cyto: cell, and penia: lack or poverty. (Wait a minute - is this also the base word for penis??)

I get wheeled off for the biopsy procedure, then back to the room. This whole thing about a weak bone marrow system seems particularly strange to me because when I turned 22 or so I put myself on the National Bone Marrow registry. I had heard about it somewhere and figured that even though the chances were slim-to-none that I’d ever be a match for a non-relative, it might possibly save someone’s life one day. 40 years later when I turned 60 (six years ago), they kicked me off the registry. That hurt – I think this was honestly the first time that I was told I was too old to do something. Now, I possibly might be on the other side of the registry!

Back in the room we meet with the amazing on-call hematologist (Dr. Gawrlytz) who explains how B12 deficiency can cause low red blood cell counts. Her hope is that we start with the simplest options and begin daily B12 injections. “We’ll do this for a while and hopefully see some positive results.” (Look up the B12 “intrinsic factor.” I loved that term so much I practically begged for that to be the cause.) Then another amazing on-call doctor (Maller) comes, sits in the chair and we chat easily about possible causes and options. She’s intelligent, thoughtful and takes great care to ask questions and listens carefully. I felt so lucky that we have access to such a strong team of doctors here.

After being discharged, our days fill with blood draws, test results analyses, communications with doctors and labs, and deep dives into science-based internet research. We find specialty websites and organizations; Joel pulls his college hematology class information from deep in the recess of his brain and even remembers the one term that he missed on his class final from 40+ years ago!

So – here we are. This coming week will be filled with a few more appointments with specialists and a couple more blood draws. At this point I’m scheduled to start immunosuppressive therapy (IST) on Monday, 12/18 (merry f’g Christmas!) at PVH in Fort Collins. It entails a triple cocktail of IV and oral meds that will both suppress my own, traitorous immune system and hopefully kick some new blood cell production into gear.

Thank you for your care, love and support for both Joel and I. It’s a fucking detour that we hope will be short and as uneventful as possible. Stay tuned, and stay in touch.