Monday, July 13, 2015

Resurrecting this old thing

I realized I wanted a place to really journal about this whole experience before the nuances slip away. For example, today, in the oncology infusion department, the volunteer was named Nazia (pronounced: nausea.) Irony? Yes.

It's been kind of an exhausting day, even though I didn't do a whole lot. I spent about 4 hours with my dad at his 3rd chemotherapy appointment. He had labs drawn (his WBCs and neutrophils were low...just above cutoff for chemo so yay), talked with the oncologist, then finally started his chemo. He's getting two drugs, Abraxane and Gemcitabine (totally had to look that spelling up) which together have been shown in preliminary studies to increase life expectancy by 2 months, compared with just Gemcitabine. No studies against that chemo cocktail vs. nothing yet, it is a therapy combination less than 5 years old.

I wasn't sure how I was going to feel seeing my dad have liquid poison pumped into him. After all, my emotions have been all over the place for the last month. The nurses were both older, incredibly nice and one of them even took me aside when my dad left to use the bathroom to say he was doing really well and give me some nurse-to-nurse information about symptoms and labs which was really comforting to me. The infusion center also, by the way, is posh. Rentable iPads, recliner chairs, a fully-stocked snack/juice bar, as well as volunteers who walk around and give out chocolate. The other patients, I noticed, were mostly older, and sedate. My dad and I talked, laughed, he sang a little, but maybe the walls were just thick because I didn't hear anyone else really at all. They read, or knit, or just sat in patient silence with their support person. The unit had a long-term feel which I both loved and hated. The nurses remembered my dad, the social worker already knew I was an RN and the volunteer remembered my dad liked peppermint patties. I appreciated the little touches, but at the same time, wanted to be a nobody, fading out into the land of discharge like the people who aren't sick enough to be memorable.

He was tired, afterward, so I went on a run to let him nap and eat some food. We watched some OITNB and talked some more afterward. I was really able to open up about Matt and religion and morality with him, something I haven't really talked to my family a lot about lately because I've been going through a lot of mental changes, so that was really nice. He has become so calm, collected, and peaceful throughout all of this, trying to "eliminate stress" (a phrase I heard about 15 times today...the man loves to talk to anyone who'll listen.) He strikes me as almost a curious child again. This strange alien environment is something he has become familiar with, but is still new and he bites off new pieces of information about this experience to chew on and accept each time I see him.

Today's word I heard him mention several times was Dignity. He spoke enough times for me to take note about the elderly patients and how they are set in their ways and want to preserve dignity. It seemed almost like projection to me, and something I definitely want to keep an eye on as this continues. Thinking about his experience this far, he's had to wear his share of butt-showing hospital gowns, been reduced to a barcode and a name/number (he greeted the co-signing RN today with his rattled-off name and birthday instead of hello so he's obviously been asked to say it more in the last month than probably in the last decade. He's been poked, prodded, injected, ascultated, palpated, asked about a million times about his bowels, and it sounds like something he's starting to notice more and more.

My goal for him, throughout all of this, is that he have the highest quality of life possible. The time he has left has been cut decades shorter than it should, but with the time he has left I want him to live the fullest life possible. I love this man more than any other man I've ever known. He taught me how to walk, how to wipe my bottom, how to roof a house, change the oil in a car, and tell the truth even when it was hard. He's taught me so, so much, through the good and the bad, but this loss is still something I feel acutely. The whirlwind of emotions I feel thinking about all the things we have left unfinished makes me cry every time, still. And I don't cry for much. I love this man, I love my family, and seeing him slowly waste away into a shell of a man, as this tumor literally eats his body away, is so, so hard. I find myself wondering if a car accident would have been better, but at least this way I have warning, and I will have closure. I get to hug him, and tell him I love him every time I see him from now until he dies. And that is a treasure. That is a gift. Our time with each other is so precious, and I think about how often I take for granted the important people in my life. I have no regrets about how I have lived as his daughter so far, and I am truly grateful for that. We have a loving, healthy relationship, and I am truly lucky that our relationship is something we can continue to grow, instead of try to heal after this horrible diagnosis came shattering down around our lives.

So this is all I have to write for now. I'm going to sleep because I have to work bright and early tomorrow.

And such is life.