Group sessions and ASH.

I’ve had one of the worst weeks of my life, emotionally, so if this is discombobulated it’s because I am. Going to avoid getting into why, however, as it’s so ugly, anxiety-inducing and just plain wrong it’s a no-fly zone for now. Been fighting off a serious depression for a week straight and it’s taking everything I have just to maintain.

I did want to get a few things down on “paper” however, as it were — this is the Magellan aspect of writing for me, this hope that in just typing I can find connections, put my life in order, discover what the REAL problem is, exorcise something, whatever.

So one thing that’s somewhat interesting is my only real-life (as opposed to online) friend who has Myeloma, Mary, convinced me to go to a monthly support group in Denver with her this past Saturday.  Specifically we went to the Denver Multiple Myeloma Support Group, which meets downtown on the second Saturday morning of each month. It was interesting, and surprisingly (at least to me) I think I’ll try to make it regularly.  Oddly enough I tend to get a bit introverted speaking about myself in person so I don’t generally do group-speak activities but I figured fuck it, I’ll get to hang with a friend I don’t get to see enough and be supportive, plus why not?

So the agenda changes depending on whether they have speakers or not but this time the meeting started with a nice meditation and then we just went around the room sharing our stories. Obviously for privacy reasons I’ll avoid relating individual’s information but interestingly for there being only eight folks this particular morning there was a wide variety of Myeloma experiences, from a 19-year survivor to someone who just got diagnosed and hadn’t even started treatment yet.

One person’s experience was actually similar to mine in that they found out via a blood test that looked bizarre to a doctor instead of some catastrophic Myeloma-related incident.  And I mention this only because the person noted while relating their story the experience of that moment where you’re hoping it’s MGUS (“monoclonal gammopathy of undetermined significance.”).  Which for the uninitiated requires a bit of explanation — so MGUS is like a precursor to Myeloma with something like a 30% chance of blossoming into the wonderful gift we know and love (no idea where I remember that stat from, so apologies if it’s incorrect).

Point is it’s what you want your blood test to say when a doctor sends you to a hematologist to explain the weird blood test results. It’s a significant moment because here you are in the hematologist/oncologist office with what feels like your last chance that this is all some crazy mistake, that the nightmare of sitting in a cancer doc’s office isn’t really happening, primed and ready for the biggest sigh of relief you’ll ever have in your life … and then WHAM. Nope, sorry, fuck-o, you lose!

It feels like I’ve walked this road for so long that combined with the chemobrain I look back sometimes and wonder at it all, especially when I recall moments like that.  More, I wish I had some pithy useful conclusion so far besides “What a long and bizarrely tragic shit show,” heh.

Onward and upward, this weekend is the American Society of Hematology’s big annual meeting.  I’ve been following it on Twitter as best I can and re-Tweeting links to articles normal human beings can understand (i.e., minimal obscure acronyms and jargon), so check the Twitter feed if you want some highlights focused just on Myeloma.  All the big hitters in the industry seem to be there, including both Drs. Mikhael and Matous, my favorites, so it’s been interesting for sure. I’m not sure what the big takeaways are from the weekend yet in terms of new stuff for Myeloma, but my list to discuss with Dr. Matous this coming week includes:

  • what’s going on in CAR-T for Myeloma
  • what is my sub-type?
  • what’s all this about doubling up on the flu vaccinations
  • what’s the story with Venetoclax for Myeloma, and
  • what are the latest thoughts on transplants. Seems like I’m seeing more and more about allogeneic (other peoples) stem cells for relapsed Myeloma victims like me as opposed to a second autologous (your own).

No cure yet though. Also if you want a wrap-up Dr. Mikhael is one of the three experts who is going to present a free streamed discussion on the latest trends in treating Myeloma on Monday night which you can watch here.

That’s pretty much all I feel like unburdening myself with right now. I have a big meeting with the Doc on the 13th where we’ll be discussing what we do next, so I’ll post again this week when I’ve had time to process.  Toodles.

 

Forty-seven.

Well, I made it.  Forty-seven years old.

As opposed to other birthdays it almost feels like an accomplishment this time, like I “won” or something.  Crossed some invisible finish line in life, even though the race never ends.  Although sometimes just getting through a day you feel like that when you have that cancer monkey on your back, don’t you?  My time horizon has shifted so drastically that I can’t think about next week, or month, or God forbid year.  I just need to get through today and I’m never sure what hurdles I’ll have to surmount.

Up until yesterday I’ve been doing really well — great mood, energy, etc.  Since I got out of the hospital about a month ago I’ve been going to bed at reasonable times (a good 2-3 hours earlier than most of my life) which I’m sure has contributed to that and getting up without being grouchy when Ariana bursts into our bedroom at 6-6:30 am. It used to take me 30 minutes of groaning, phone-surfing and sheer willpower to get out of bed; now I just get up. In fact a few times I’ve let Amy stay in bed and taken the puppy out, fixed Ari some breakfast, made some coffee for myself (trying to wean off the Starbucks a bit) and been wide awake.

Like a real husband / dad. It’s been nice, I won’t lie. Since my diagnosis all those years ago I’ve felt like I’m phoning it in sometimes and I hate that. Especially when it comes to being a good dad. I know it’s silly to rail against the reality of this disease at times, such as the fatigue, the back pain, etc., but it still bothers me. You want to be the best parent ever, not whatever the fuck this is.  So it’s been nice.

I’m different since I left the hospital. More thoughtful, nicer, calmer. Did a lot of thinking staring at those ceiling tiles and so far so good.  My marriage is better, although if I don’t stop snoring that may be in jeopardy soon. I do more with Ariana, and less with my cell phone and computer. I’m sleeping better, although only with the help of a bunch of scary pharmaceuticals. Just hoping it continues as I like this version of me, especially contrasted to the me when I was taking Dexamethasone and destroying my life without even realizing it. *shudder*

Not sure if I’m coming down with something or not in the last few days but my energy is definitely lower which is weighing on me a lil’ bit — took a nap yesterday afternoon after leaving work early and although I didn’t get to sleep until around 9, I went to bed at like 7:30 pm.  Amy and her mom (nurse-to-be and nurse) believe I’ve still got a lot of healing to do and I’m inclined to agree.  Just hoping I don’t get sick … it’s never “just a cold” with me, at least this year, and I really could do without any more hospital stays or the accompanying bills.  So far though just a tiny runny nose and fatigue, so fingers crossed.

One concern right now is my taking Oxycontin daily. My back has been really bad so I’ve been popping one with the morning meds and it definitely works. Having been a hypochondriac for most of my life, however, I’m freaked out about whether I’m working on an opioid addiction. I know it’s ridiculous for a variety of reasons to think I’m addicted to it but I’m so wary of stuff like that — it’s one of the reasons I never did cocaine in my life (just every other drug, heh) and why I don’t drink. I need to figure out something though because I really am getting sick of the back pain. Another thing to discuss with the docs this month.

My internal thermostat is all fucked up as well. Ever since I left the hospital I’m either sweating or freezing. At the appointment with the oncology team that I’ll get into in a second it was suggested that perhaps I’m having thyroid issues — apparently what I was describing is a sign of thyroid issues. We didn’t schedule a test though so I need to remember to ask about that at my next visit.

Since I last wrote I met with Megan, the nurse practitioner from my oncologists’ team, and had a follow-up with Dr. Barley, the cardiologist that took care of me in the hospital. The heart looks good (according to the EKG) and Dr. Barley seemed pleased that I looked so healthy compared to the last she saw of me. We discussed if it was OK for me to take Carfilzomib (a chemotherapy that can affect the heart) and what drugs I could get off (the daily aspirin only, sigh) and worked out a tapering-off schedule for the steroid I’m taking.

Megan and I had a long meeting, which was awesome. Perhaps you’ve learned this yourself but there are some folks in healthcare who really do care about you and it shows, and she’s one. I also hate feeling rushed and none of the docs or their teams at CBCI have ever made me feel like that. Net-net is no chemo right now while my body heals up from all of the damage this year while Dr. Matous takes some serious time to review my case and figure out where to go next.  CAR-T clinical trial?  Stem cell transplant?  Carfilzomib?  Something else?  Either way I meet with the doctor on the 13th and I’m sure we’ll map something out to start after the holidays.

My hair has come back, although mostly white this time, and I’ve put about 10 pounds back on since I left the hospital.  People keep remarking on how much better I look, that I have color, etc. Considering I looked, and felt, like a corpse when I left the hospital a month ago, I appreciate the comments. It all seems so bizarre though, and I still feel a bit displaced.  Having eyebrows, a beard (albeit a white one) and some hair again certainly has helped though.

Although personally I attribute the hair growth to the puppy, who seems to take an inordinate amount of pleasure in licking my head.