I feel sometimes like I should just change the name of this blog to “Depression Spiral” or something similar. In over a decade of blogging I’ve certainly focused more on the negative than the positive since it’s cathartic for me, but there was positive there before. Now it just seems darker each week, a continuous descent into the depths of disappointment over this diagnosis and metamorphosis from what I was into CANCER PATIENT.
In other words I’m not adjusting well, in case that weren’t obvious.
There’s several threads twisting in and out in the last few weeks that are combining to keep me reeling most waking moments.
One, I don’t think I’m asymptomatic anymore. In the last week I’ve started having regular and constant lower back/spine pain as well as a sore spot in my hip/buttocks, both the spots that lit up as being active on my PET/CT scan. I mentioned this to Dr. F. at chemotherapy last week and he said we could certainly get an MRI ordered and then “radiate” the spots, which didn’t sound fun. I deferred to after the holidays to get my mind around the concept. Either way it’s been a significant milestone in feeling lately like I’ve begun slipping from mortality somehow, that THIS IS HOW IT BEGINS. Perhaps that’s not accurate, but it’s the feeling I have, right or wrong.
Secondly I feel like the LexaPro is just not working anymore. Ever since about four weeks ago when Dr. F. casually noted that the CyBorD treatment didn’t seem very effective and I should ask Dr. M. at the MC about abandoning it I’ve felt like I was slipping emotionally. I now feel about as stable as I felt before I started LexaPro (not very) — prone to overwhelming and random fits of depression and sorrow, inability to control my emotions, etc. I need to call the docs today to see if they can up the dosage or something, but I have no idea if that’s how you do it with these kinds of drugs. Zero experience.
My daughter’s second birthday party was this weekend (she turned 2 yesterday). Combined with the overwhelming feeling that everything is finite for me lately (only X number of her birthdays left, etc.), it has been difficult to say the least. The holidays coming up will be the same, if not worse. On top of that my parents are being as toxic as they’ve ever been, which I cannot understand and feel is actively taking years off my life at this point. You’d hope, if you ever go through something like this, that the people around you could rally a bit and re-prioritize. When you get the opposite the effect is really chilling.
I’m finding it really difficult to excise this cancer part of me from the rest of my life. Sunday night we took our daughter to Sesame Street Live, her first live stage performance. As she sat on my lap in her gorgeous dress, enraptured, clapping along, saying the character names, I looked around at all of the other children and her and couldn’t stop the thoughts. How unfair this is, how wrong, how isolating.
I have distilled my entire life down to one single fear at this point. I don’t fear death itself anymore — that has been scoured away over the last several months as I’ve been forced to confront this reality and realized that while I don’t want to die, I’m not afraid to be gone for myself at least. I fear the pain that this disease pretty much guarantees me on the way there a bit. But really the only fear I have is the impact that my death, which feels imminent even if I know it’s years away, is going to have on my daughter. How unfair it is that she won’t have a daddy after a certain point, and thanks to the method may not have much of one even before I’m gone.
We play every night together, talking, singing, and I cannot get that thought out of my fucking head as her innocence and the pure happiness of being that only children possess washes over me and highlights these facts. I can’t even escape it when she’s not around — I was watching Chopped the other night, one of the only TV shows I watch, and one contestant just randomly mentioned that his life was transformed when his father died at 12 and only cooking saved him. It’s kind of hard to sit there and not have that effect you, but to hear it, knowing you are going to do that to someone? It’s too much, just too hard. I wonder, very seriously, if I’m making a mistake hanging around. It’s not like there’s hope here. I know that sounds defeatist, I know I need to be positive, but the pragmatic side of me knows this is a death sentence. This isn’t a cancer, to my knowledge, that you get to survive indefinitely like some tumor you get removed. Unless they cure it I’m always going to be under it’s shadow until it eats me alive, literally.
Is it better to stick around, torturing myself while I slowly but surely wither away and knowing that at best I’ll have a limited amount of time to share with my daughter before I yank that away and leave her with the hole a prematurely dying parent leaves in a child? Or is the courageous choice to take myself out of the picture now, before she is capable of remembering more than flickering glimpses, to give her a chance to have someone else, perhaps even better, fill that role?
I cannot describe the sheer agony of knowing that all you ever wanted in life, all that mattered to you, was to be the hero to a little girl who’s already been through too much. And knowing instead you’ll destroy her no matter which way you turn or what you do.
Live with that for a day and then tell me I’m crazy to be considering this stuff pragmatically. Then ask another cancer patient about it, because I can’t find a column or blog written by one where I don’t see the same theme repeated over and over and over again.
So I dunno. My inability to doom her right now to having a father who killed himself answers the question, as it’s my understanding from researching this (quite a bit of research) that of the two (dying when she’s young or committing suicide) the latter is far worse. I’m just not sure I can reconcile it indefinitely.
Oh, did I mention I feel like every week my blogging gets darker and darker?
OK, just checking.
I’ve been trying to get a letter written to Ariana for a while now — I have it started and saved but it’s simply too painful right now. I realized that I was kind of blogging to her, which was getting dark, so I decided to sort of tell her the story of my life in future letters. I realize, as I have more and more time to reflect, that I will be the only one with either the information or the interest to really let her know who I was. Fuck, of the few people I know anymore who even know a little about me I think half of them have opinions of me that aren’t entirely flattering anyways. I had always hoped to relate the stories of my life, my experiences and the lessons I learned (or should have) in person. It just doesn’t feel like that’s feasible anymore.
As usual the Zometa infusion has made this weekend brutal. It feels like it’s kicking in later than usual this time — Sunday was awful, with the usual bone and muscle pains and cramps, but then Sunday night was even worse. I think because it hasn’t been cold in previous months outside that sleeping without sheets helped somewhat. Sunday night, however, it was freezing so I’d pull the sheets up and then wake up two hours later soaked like someone had poured a bucket of water on me. Change clothes, go back to bed, and two hours later repeat the same cycle. All night.
What else … oh, got a letter from my insurance company last night that, at least how I’m interpreting it, implies they will not cover me having my stem cell transplant at the MC in Arizona. I had no idea the transplant coordinator had started initiating research like that so it was a complete surprise and obviously a slap in the face. I’m hoping I’m simply reading the paperwork wrong, but I’ll need to confirm that tomorrow — it just seems like too much effort and too much risk today.