Or it would be, but on the way home from the colonoscopy yesterday I started getting sick. Seems like just my daughter’s cold so far — fever is 98 and I’m not feeling too too terrible, so that’s good. I never liked being sick but with my blood counts all fubar’ed it’s apparently somewhat dangerous now, so there’s some anxiety there. Took the day off, put the Xbox in the bedroom and just trying to recline as much as possible and drink OJ.
Figured out the hard way (or easy way, really) last night that mixing a Xanax with NyQuil is a great way to (a) sleep like a zombie and (b) snore so badly your wife leaves the bedroom. Which I feel bad about because apparently the cats kept her up all night and now she’s the walking dead. Sigh.
I woke up during the colonoscopy yesterday. I didn’t realize it until we were halfway home and I started getting my memory back, and was thinking “man I had some weird dreams during that frigging thing.” Turns out after reading the paperwork that I did in fact wake up during it. That must have been awkward.
On the bright side they didn’t find anything bad in there. Didn’t think they would but the way medical news and I have been doing lately I’m almost surprised they didn’t find something to hasten my demise a little faster.
Went in Friday to start my third cycle of chemotherapy and talk to my local oncologist about my results. There are two primary numbers for my particular flavor of multiple myeloma that I’m trying to reduce to close to zero, igG(S) and igG Kappa. Don’t ask me what they mean — they’re just numbers to me representing this disease and the explanations are a bit beyond my comprehension. Anyhow, after 2 of 4 prescribed chemotherapy cycles I’ve only made a 25% dent in the igG(S) and really haven’t changed the igG Kappa. According to Dr. F., that’s not a good sign that the CyBorD chemotherapy regimen is working. He said generally you’d expect a more substantial impact up front for a variety of reasons, and that at this point it seemed likely that (a) I’d need to change regimens and (b) the chances of being ready to do the stem cell transplant by January are low.
Learning all of this was like getting slapped in the face with a bag of bricks. I just can’t seem to catch a break with any of this, and I feel like I’m being railroaded towards a fairly unpleasant demise every time I get more news. I cried in the car driving home, something I haven’t done in a long time — even through the LexaPro it’s just too much. All of the old thoughts about not being around for Ariana came rushing back, etc. I know there are other therapies and that it was wishful thinking to believe I could have any semblance of normalcy in life after being diagnosed with this, but whatever glimmers of hope I had for that just got trampled Friday.
On top of that this was a Zometa infusion week, and sure enough starting Saturday that fun began again. Nothing as bad as that first cycle but really cloying bone and muscle pain that has lasted until today. I feel like I got thrown out of a car, if that helps paint the picture. New this month was/is that I feel like I sprained something in every muscle in my shoulder blades on my back … just an odd sensation.
The plan is now to see what Dr. M. at the Mayo Clinic in Arizona thinks about everything when I get down there on the 12th. I’m thinking if we hit it off I’m going to have him take over my care as well — I’m not sure what the point of Dr. K. in Rochester is when I’ve never met him and they’re all on the same team. Minnesota is too far from me while Arizona is an easy trip at any time of the year, too hard to get to, can be inaccessible in winter and I have no connection with the doctor there. I’m sure he’s a genius like the rest of these guys, but I like feeling like the people in charge of my life care. So we’ll see.
I switched therapy to be twice a month since (at least up until this weekend) the LexaPro was having a significant impact. The timing of that, as well as the rest of all of this shit, is really making me feel like there’s some force out there taking a direct interest in fucking me over as much and as insidiously as possible. I just don’t get it.
Had an appointment with my GI doctor today, the one who originally ordered the tests that led to the discovery that I had multiple myeloma. Was strange — he teared up at some points during our conversation, which is now the second time I’ve experienced that. Much like my last impression when it happened with my original doctor at the Mayo Clinic, while it’s nice to know your doctor is so connected to you and your situation, it’s also somewhat of a confirmation that you’re pretty well fucked.
They are scheduling a colonoscopy next week. I had something light up on the PET/CT scan that I did, and while nobody seems concerned (they had just done one a year ago and apparently things don’t happen that fast in your colon), I’d like to be reassured nothing is going wrong there if nothing else. More importantly however my GI doctor believes since the Mayo Clinic requested it be done that they might not proceed with my transplant if it isn’t. So one more thing to stress about, although given the fact that everything feels fine there (in fact better than usual, really, considering I was seeing him for recurring diverticulitis) I’m not too worried.
I am, however, utterly sick of doctors at this point. Nothing against any of mine, I just don’t like medical stuff and I feel like my life is one big fucking doctor’s appointment. I want to be normal again, to not have the weight of this nightmare constantly bending my back down like a backpack full of rocks. I want to be happy, and feel what “carefree” is like again. I don’t remember it anymore, don’t remember what it’s like to have nothing to stress about (much less a terminal disease). I stare down the barrel of this every minute of every day now and it’s so hard to muster the strength to keep going, to keep telling myself to get through the day and the one tomorrow. To convince myself I’ll have plenty of time with my daughter and to do the things I wanted to do in life.
Well some resolution today … for the past several weeks I’ve been dealing with trying to get my stem cell transplant consult set up in Arizona at the Mayo Clinic. I was supposed to be seeing a certain doctor that was a recommended colleague of Dr. M’s from the Rochester Mayo Clinic, but with her leaving the MC things got left undone. A few weeks ago I was still trying to set this up and found out I finally had an appointment but it was with someone doing their fellowship, that they were treating it like an initial consult (which cost $6,000 in Rochester, so yeah, um “no”), etc.
Anyhow, I have been stressing out about this for several weeks now, trying to get people on the phone and coordinated, etc. I am supposed to have the transplant after 4 cycles (months) of chemotherapy, and with the 2nd cycle ending last week and them needing about 6 weeks to set up a transplant (giving me a 2 week window) I had to get this all worked out. So I FINALLY got this settled this morning and now have an appointment with the doctor I was originally supposed to be seeing. Amen.
Not that I’m all fired up to get a stem cell transplant, but at least now I’m seeing the intended doctor and I have one less thing to check off the to-do list.
Mentally and emotionally things have been weird lately. I think the LexaPro has definitely helped, so that’s good. Ditto the therapy. It’s still hard to shake this “fuck me, I have cancer” thought though, and the chemotherapy taking slightly longer to rebound from each week isn’t helping.
Hoping for good numbers this week — not sure what the implications are if they aren’t, and I had a nightmare about that this morning. Fingers crossed.