I've had some good long talks with Hospice, and some friends who have literally been in a similar situation with brain cancer.
I've been holding myself trying not to fall into a depression. Trying not to lose the functionality I still currently have. I feel so tired, so much of the time. A deep exhaustion.
2009 was the scared shit year.
2010 was the year of fighting, chemo, and insurance pains.
2011 was the plateau. Was the "holding pattern".
2012 has changed. The way things work, the way he thinks, changed.
He's not going for more chemo. He made it very clear a long time ago, he could not face that fight again. Losing so many days to chemo, sickness, fatigue; for something that wouldn't raise his Quality of Life.
But, that part is hard to focus on, even though I remember when it's now in my face. When the inevitable has started to really happen. As much as I appreciate you, Dear Readers, this is still a way for me to talk to myself, to preserve these thoughts. A record of Death.
I don't know how to tell the people who are not around him so often how he is. I don't have the words that dull the sting. I live it, every moment of the day; but telling the other people who love him and care; so much so it hurts them more to see him like he is than stay close.
I just don't know anymore; I don't know what he wants. It's so hard for him to really grasp a concept to be able to articulate his desires and needs now. My biggest worry and fear is he is no longer getting the comfort he wanted from living with me.
I am so tired, but so guilty that I'm not doing "more". I can't even begin to know what "more" even is, but I still feel like it's not enough for him. I'm not doing EVERYTHING I can to make it more "fair" for him.
I've cried a lot this week, perhaps more than in the past month combined. It's terrifying to feel like I'm really losing him again. I have flashbacks so often to 2009 and the summer and the tumor, and how scared, how perpetually frightened I was then. He wasn't working and my hours were part-time. Money was always a worry. We were fighting over stupid things and I just did not know why. He was withdrawn, angry. He was no longer laughing. It was dark. I remember our huge 4th of July fight. I remember wondering if, on the Thursday before we found the tumor, I would end up divorced before a year of marriage that know one even knew about?
All of that keeps coming back.
Some days he feels/remembers/thinks he is in a time around 2005-2009. He's vaguely aware time has passed, but it's such a hard concept for him; time.
It's so weird, and so painful to see his brilliant brain doing this to himself. He knows me, but not always who he is anymore.
He has not been my "husband" in a long time. He cannot even remember to say "I love you" to me daily. It hurts, but I try to keep the pain down, like a bruise. The scary part this time is not that we don't know what's going on. His medical team and I are fairly sure there's something going on again; most likely another tumor(s). Since he doesn't want "treatment" there's no point even checking right now though. Schrodinger's Tumor. Better to just not be imagining what is there; to be unawares, and he is.
There's the smallest kindness in that; I don't think he is very aware at all just how much has slipped away or that there might be a tumor. Well, I guess today he was talking to the SW and thought he was back in 2009 and knew he had a tumor, but didn't know it was removed.
He gets a lot of details confused.
I knew this time would be coming. I knew from the time he went into the ER and I saw his CT scan. I knew from the Oncologist, the Radiologist, the Neurologist, and the Hospice team.
I knew it when we would have talks about his wishes, and I knew it when I had to ask for the urn to be made.
But, facing the end, it's hard.
I know statistically if there's another tumor and he doesn't treat it will be a couple weeks to maybe 3-4 months.
It's hard to think past tomorrow, maybe a few days from now.
I keep feeling these conflicting portions of myself scream out that I'm both way too young to deal with this pain, this heartbreak, this loss, this responsibility, I also feel so so so old, so aged, so seasoned to certain ways of life and Death.
The Social Worker said it was nothing he felt I had to address today/tomorrow, but he'd read next week or help me write.
It's terrifying having to be so strong.
I'm thankful for the bit of local, physical support I do have, but I'm trying to be open and vocal about needing more.
Things and times I truly believe will only get harder from this point on.
I keep wishing I had my best friend, my husband with me to give me strength.
Terminal brain cancer in a 25, now 27 year old; it's unfathomable cruelty to watch.