This is a hard entry for me to write. Normally I just expose my life without a care, a habit born of almost three decades as a journalist and then a blogger. But I’ve always self-edited, keeping the most embarrassing parts private — although granted what I consider embarrassing and others might is apparently wildly different at times.
But for example, I don’t go into my marital issues here. It’s not really the point of the blog and detracts from what I’m doing with this, which is a bit more targeted.
Today’s topic I can’t really avoid, however, so strap yourselves in.
When last I wrote I was just about to start radiation treatments for tumorous growths found in my lower back and left hip. I’m happy to report that after 10 sessions those pains are gone; however, I don’t recall ever feeling so bad, so consistently or for so long as I have since. Only in the last few days have I stopped feeling nauseous 24/7 and I’m still sleeping a ton. That was a humiliating and unpleasant experience that I hope to never repeat, although chances are I’ll have to at some point.
As I was saying I’ve felt like a dumpster fire since, however — so much, in fact, that I ended up going into the hospital for a few nights a few weeks ago while they ran a barrage of tests to make sure my heart was still OK, lungs, etc. I know for a fact something was/is wrong, although whether it was aftershocks of the radiation treatment or not who knows. Unable to eat, no energy, soaking everything I’m wearing multiple times a night in sweat, chills so bad I was afraid I’d break a tooth … yeah that’s not normal even for a cancer patient. But, other than needing some blood supplements everything came out negative and I asked them to just discharge me after a few nights since I can sleep at home a hell of a lot better than at the hospital and they couldn’t find anything. I’m still suffering from a crushing amount of fatigue though and my energy levels are non-existent.
The doctors did put me back on a steroid, who’s name I’ve conveniently now forgotten, in case what was causing all of this was being weened off of the Prednisone (sp?) I was taking too quickly.
No news from either of the sites running the CAR-T clinical trial I’m trying to get into. The radiation treatments put that on the back-burner for now but with that in the rear-view it’s going to be time to deal with again. I’m honestly not sure what to do at this point.
Ariana, my daughter, has been so sweet during this time. I basically have dinner, if I can stomach it, and then go lie down upstairs, and she sneaks up when my wife isn’t looking to watch cooking shows with me. Granted letting her watch Hell’s Kitchen (Hulu binger, what can I say) isn’t going to win me any parent of the year awards but we enjoy it. She has her first therapy session at the end of this month — sort of preparation for a parent dying thing that was recommended to us. I can’t really focus on that right now though because just the thought of my illness being the reason she has to do that makes me want to scream and break stuff until there’s nothing left in the world to break.
That brings me to today, as I sit here in a bathrobe trying listlessly to find answers as to where things went south and did so so fast.
Yesterday I checked myself in to the hospital for a psych evaluation. This was prompted by what feels like weeks of hardcore depression and what’s called “passive” suicidal thoughts. I haven’t had much of an appetite for weeks, I couldn’t control my emotions in terms of sadness, and I just want to sleep all of the time, to not be awake so I didn’t have to think. The guilt of what my cancer has done to those around me has become too much to bear — I can’t look at my daughter without bursting into tears, and the realization of how bad my marriage has been damaged is almost too much as well.
I also feel hopeless about my cancer, and further like my doctors have given up as well. We haven’t discussed treatment options since I was rushed to Nashville in January to interview for the CAR-T study there but I know the list and it’s a short one. So what’s really left, you know? Just to fade away, ruining everyone’s life around me in the process (what it feels like). My daughter who can’t have a healthy normal daddy. My wife who’s dying for intimacy in a virtually loveless marriage.
At some point you just have to wonder what’s the point.
For the last five years I’ve managed, if you can call it that, my depression over my diagnosis. In reality this has consumed me, utterly. I’m not me anymore, just some cancerous automaton who can’t even figure out the motions, who wants so badly to just have a day or two of normalcy but has forgotten what that even looks like.
But I’ve maintained, even managed a smile at times. I try desperately thought failingly to maintain friendships. I work, mindlessly, to support my family since it’s all I feel useful doing. I just don’t think about the cancer thing as much as I can, which requires some serious effort at times. I mean you can’t rationalize this away, at least I don’t think so. I’ve got terminal cancer and there’s no miracle happening here for me, no last-minute save on the horizon that I can see. I’ll die as my numbers creep up and the cancer causes more things like the tumors I just had removed, and to a greater or lesser extent take everyone around me with me on the journey down the drain. At this point I don’t even seem like I’ll be busting the average life expectancy post-diagnosis of seven years, despite all of the advantages I’ve had (best medical care and insurance, caught early, etc.).
Anyhow, I’ve maintained for the most part until recently but something, or some drug change, in the last month has made this almost untenable. So yesterday my wife called the oncologist and they told me to come down for a pysch evaluation, which is a pretty scary deal. In the end I was offered three options: hospitalization in a psych facility, an intensive outpatient therapy option, or basically nothing. The thought of being hospitalized in a pysch facility frankly scares the shit out of me, nor do I think it’s necessary, so we chose option B. I’m just sitting here waiting for the call for this all to begin.
In the meantime I’ve been doing my own drug evaluation and ditched the Ambien last night — that’s the only thing that’s really changed in the last week and it’s not really working the way I wanted anyways. So far so good. I’m emotional today, but after yesterday that’s to be expected. I feel a little lost, embarrassed, and although I’m forging ahead with it I’m dreading this phone call from the psych people.
It’s bad enough that Ariana’s daddy is dying, he doesn’t have to be crazy too.