I’m mentally numb today, just sort of going through the motions as my brain frantically tries to process the last 24 hours of my life while remaining functional.
On Tuesday I had an appointment to get the monthly infusion of IViG and meet with Dr. Matous to map out where we were going with my care. One of the things we had to discuss were the results of an MRI from the previous week since I’m still having tremendous amounts of back pain and it seems lower than where I had the L2 kyphoplasty. So he hands me the report and we read it together, look at the slides, and there’s one that’s troubling him (it’s all troubling to me because I can’t understand a word on the page). So he calls up radiology and gets one of their doctors on the phone to discuss what we’re looking at.
And guess what?
Turns out that the back pain is being caused by a tumor.
Lest that be the only bomb to drop on me, the MRI also showed that my spine has gone from relatively OK to a fucking dumpster fire since my last MRI (July-ish), and there’s serious concern that I’m at risk of more fractures like the one from last October. On that end we’ll be going back to monthly Zometa infusions (was quarterly) and, well, finger-crossing I guess. Definitely won’t be picking up anything heavy anytime soon. I asked if the Zometa could stop and perhaps reverse the trend we were seeing in the pictures and he said yes, so we’ll see. I honestly have my doubts — if it was working then my back wouldn’t look like it does now, would it?
In discussing CAR-T and what we wanted to do about my Myeloma, I brought up that perhaps I should go chat with my doctor at the Mayo Clinic to see if the MC is running a Bluebird Bio anti-BCMA CAR-T trial (the one I and everyone else with Myeloma on the planet wants to get into). My local oncologist proceeded to email my doctor at the Mayo Clinic and while I can’t get into why right now, suffice it to say I no longer have a contact there (not in a bad way, just shouldn’t discuss it right now). Not really what I wanted to hear, although there is good news on that front if you’ll bear with my tale a bit longer.
So with a parting expression of concern over me from Dr. M I was released back into the wilds to process all of this.
Yeah didn’t happen.
I haven’t had an office visit go that far south since I found out my stem cell transplant was largely ineffective. A tumor? A FUCKING TUMOR? I didn’t even know you could get a tumor from Myeloma. And on top of that I thought my disease was in kind of a holding pattern. I also thought we were supposed to be able to see the bad stuff related to Myeloma coming from miles away and react quicker, not suddenly find a tumor the size of one of my vertebrae lodged into my back.
So Dr. Matous set me up to see a radiation oncologist at Sky Ridge near my house/office for radiation immediately. Amy and I met with the doctor there on Wednesday, Dr. Mateskon, and liked him and his staff. While discussing everything I noted to him during the consult that I had developed severe pain in my left hip as well, and hey Christmas in January, the CT scan they ran after we talked showed I had another tumor in the socket of my hip.
I should note at this point, and if for nothing else than to stop this narrative from completely circling the drain, one weird but good thing happened at the radiation office. During the meeting Dr. Mateskon noted that we wouldn’t be able to do continuous days of treatment because according to a text he had received that morning from Dr. Matous at CBCI, I had an appointment in Nashville next week. Baffled, what we pieced together is that Dr. Matous came through and got me an appointment with a doctor running an arm of that coveted Bluebird Bio clinical trial at Tennessee Oncology and was going to call me later. So Sunday I fly out to Nashville to try to get accepted into that. Crazy eh? So some good news in a sea of drowning crapmonkies.
Anyways, back to the radiation thing. So they do the CT, find that second tumor, and start prepping me to start the therapy (which involves actually tattoo’ing me so they get the placement right or something). I’ll be doing 10 sessions, the first of which I did this morning. No major physical side effects so far except I feel sort of tingly — the Zometa, which I also got yesterday, messes with me so I can’t really separate what is bothering me right now and why. I’m totally numb mentally and emotionally, however — I don’t think any of this has sunk in, really, even when I was laying on the table in that monstrous radiation machine today.
I mean I just had radiation therapy for a tumor on my spine.
What in the unholy fuck? How did we get here?
I dunno. I’m trying not to think too much about all of this because when I do I don’t like what my brain starts doing. Like asking questions about how if we found two tumors that easily, are there any more anywhere? Why all of a sudden do I have these? Now I’m wondering if every weird sensation or pain is a tumor. It never stops. Even the Nashville thing is freaking me out. Forgetting the fact we’re talking about the bleeding edge of science on cancer with zero long-term data on survivability, etc., I’d be doing that treatment solo. I can’t take Ariana out of school … so assuming I even get into the trial, which is a long-shot, I’ll be moving to Nashville for what I understand to be about two months. That’s scary to me, and really depressing.
So many unknowns and new paths have opened that I feel like I’m not even adrift, I’m being actively overwhelmed and pulled under. I fear when some of this starts sinking in and the wall breaks down a bit.
Anyhow, that’s the update. I’ll write more if the mood hits me, something else happens (which damn near might push me over the edge, so let’s hope not) or when I learn more in Nashville. Hasta.