Waiting on CAR-T and Fuck my Liver.

It’s been a long couple of weeks since that last entry. I do believe the Ambien was the culprit with the emotional problems, which subsided a few days after I stopped taking it. I attended one of the IOP sessions as well but decided, after talking to the wife, that it wasn’t for me. You could almost feel when my mental fortitude, for lack of a better way of describing it, came back. Was like putting on sunglasses when you are suddenly blinded through the windshield, you know?

But the IOP thing wasn’t a good fit. One, my breakdown or whatever you want to call it was due to a chemical problem which we fixed, two I can’t do group therapy 3-4 times a week for 3 1/2 hours a day for six weeks and keep my job, and lastly I realized it wasn’t a tailored experience (and how can it be in a group setting). For example, they have a theme and the theme of the week I attended was interpersonal relationships. That has nothing to do with what’s going on with me. You want depressing?  Sit through a week of therapy that has nothing to do with your problems.

I was disappointed because I wanted something to fit. I need help with my medications, and I need help with coping with this. Just stopping taking Ambien did not suddenly make my life not depressing — I simply can handle it now. Well at least it feels like I can, like I’m shielded again from the reality of all of this.

I didn’t feel like I belonged there either. The people were nice and all, but I’m sitting there with a bunch of unemployed folks, junkies … that has nothing to do with me. Is that elitist?  It’s not meant to sound that way — I just felt like I was sitting around a table playing “which one of these is not like the other.” And to be fair maybe they were too, so who knows. All I know at the end of the day is that I’m depressed because I have a terminal diagnosis and, were that not enough, I’m plagued by the guilt associated with this disease and the sacrifices made and to be made it has caused. I’m just trying to find the easiest mental and emotional path through things in the meantime, whether that be therapy, drugs, or some combination therein. Thereof? Can never remember that.

I did, however, meet with one of the social workers at the oncology clinic this past Friday for quite a while and requested some help. They are going to try to find someone in my zip code with an iota of experience with depression caused by a terminal disease diagnosis (which I did not have the first time I went into therapy after being diagnosed). I also requested information on palliative care, which my oncology clinic outsources. So some changes will definitely be getting made.

Before I get into that oncology visit, about a week and a half ago I checked myself into a local hospital, Sky Ridge. For a good 36 hours or so I had been feeling miserable — chills, sweats, total body weakness and fatigue, GI issues, couldn’t get comfortable, you name it. I struggled with what to do because without a fever, problems breathing or heartbeat irregularities I figured I’d go all the way downtown to PSL just to be told there’s nothing they can find and I have cancer, so deal with it (politely, of course).

After we put Ariana to bed, however, I just couldn’t take it any more so I drove myself to the local ED because I could not have safely made it to PSL (which is downtown Denver, I live in a small suburban area called Parker about 25 miles south of there). Sky Ridge was a shitshow but I got some morphine and Zofran, which helped immediately (not sure what a healthy dose of morphine doesn’t fix), and after a few hours a CT scan revealed that I had colitis.

Colitis? With like none of the symptoms?  I asked my oncology office to get my records from the hospital and have my doctor review them because that just didn’t sound right.

So Friday I met with my oncologist. First I learned that his longtime nurse navigator was leaving, which sucks as I relied on her so much. More troubling personally, however, is I found out something they didn’t mention to me in the ED that past visit is that there was a decent-sized spot on my liver that also showed up on that CT scan. The PET scan from February shows no activity in that spot so we’re hoping it’s nothing serious, but I’ll be going for some 45-minute MRI next week to find out. Fairly stressed out about this — not the MRI but that my cancer may very well, although unlikely, have metastasized to my liver.

The hits just keep coming lately.

We discussed CAR-T a bit as my parents were also at this appointment, and I’m still in limbo. It’s been about five months since I was treated with any sort of chemotherapy for my Myeloma and my numbers, which have been fairly stable, are now apparently slowly creeping up again. My doc got in touch with his contacts both in Nashville and at the Mayo Clinic in Rochester but the simple fact is that the sample sizes are just tiny right now for the study everyone wants to get into. I asked at what point do we go another route and was told probably in another month we’ll go for another stem cell transplant if we don’t hear anything.

I’m not sure I wouldn’t prefer that right now. Doing a stem cell in Denver would be easy, compared to when I did my first in Scottsdale at the Mayo Clinic, at least logistically. I know and like the BMT staff here and most importantly trust them, and all of my support is here. I have no fucking idea how I’d deal logistically with doing that CAR-T clinical trial in Nashville with zero family or friends anywhere’s near there. I know my support group would come together to figure it out but it would be hard — even Rochester would be hard, although I have family in Minnesota.

Anyways, I’m glad I’m feeling more stable mentally and emotionally right now because it was a tough meeting, what with the liver thing and everything else. Cancer has a way of becoming more real somehow every time you deal with it, which probably makes no sense. But things feel colder now, more finite. Maybe it’s this last vestige of myself trying to convince myself a miracle will happen (or at least not the worst case scenario) being snuffed out, the realization that it won’t in fact be different for me than those other folks who die from this stuff, etc.

I just feel sort of numb and sad, however, and a bit shell-shocked from all the news and health and mental issues in the last month.

Author: uwfacepalm

Father, husband, portfolio manager, cancer victim (multiple myeloma since 2013). Trying to navigate this goddamn disease as best I can while enjoying what time I have left via those relationships, friends, the UFC, gaming, MMJ, diving and helping teach it before this all went down as a PADI Assistant Instructor and a Dive Guide at the Denver Aquarium (well, before my white blood cell count went to shit thanks to the chemo/disease).

4 thoughts on “Waiting on CAR-T and Fuck my Liver.”

    1. D I’m so sorry I took this long to reply … was looking through the dashboard of my blog this morning and found a few I hadn’t addressed. Amy and I were just talking about you the other day … are you moving to Nashville with Jackson?


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