I spent the entire Thanksgiving afternoon with Rich. I went down to the hospital cafeteria and got myself a turkey dinner tray and brought it up in hopes of sharing the meal with him, but he was already done because they brought his meal at 11:45. The good news is the food at AGMC has improved VASTLY since his visit this past June. It's good to look on the sunny side of life.
It took a lot of prep to go in there today. When I talked to him last night at 6:30 as I was leaving work, he was NOT happy. He was very clear on the fact that he's no longer interested in “going on”. He's getting EIGHT injections a day of a medication that is like molten lava. Rich is not a complainer, he has a HIGH threshold for pain and needles don't bother him. He's done. He was crystal clear on the fact that he “will not continue like this. That's 56 shots per week.”
Within the hour before the next injections are due he becomes physically ill with the anticipation of having red hot metal injected into the tops of his thighs. He spent several minutes ranting about the nurses – and this is how I knew we had reached a dangerous depth. His voice is spewing anger as he tells me....
“They come in with these injections and nothing makes it better and every gawd damned time they say “I know, I know, I'm sorry”..... Well, guess what... you DON'T fucking know! YOU don't know! You don't KNOW!”
Those of you who know Rich personally can fathom the horror of hearing him speak like this. I have never heard him speak like this. All I could do was encourage him to vent. He's had enough, there are no answers, there is no plan, there is only this limbo punctuated by eight horrific injections a day. When he seemed done with his spew, I asked him as softly as I could if he wants to stop the fight. I tried to phrase it in such a way that it sounded natural, acceptable, easy and totally okay. There was a long silence, and I've got to point out that it is damn hard to drive on unlit country roads in the dark with a misty rain and your eyes filled with tears and cataracts.
Finally he said, “I can't do this anymore.”
Thanks Be for the Voices in the van, because I heard one of them tell him quite calmly, “Okay, sweetie. I'll be there tomorrow and I'll hold you, and we'll figure out what you want to do next.” Then we spoke of the superficial things that couples speak of at the end of a day that has them parted.
Mostly he was quiet today. I let him be quiet. I did not speak unless spoken to, my goal being that I wanted HIM to feel in control, not being TOLD. After our thanksgiving feast, I crawled into the bed beside him and joined my breathing to his. We were still like that for more than an hour and then he had another wonderful visit from little people—Tessa (14 mos)and Michael (2 mos). I could go on and on about that short visit and what it did for him, but suffice it to say that I know Tessa and I've watched her interact with Rich before, and this time like always she could not take her eyes off him, but she was unusually subdued. It seemed that she plugged right in to the energy and flowed with it.
It so lifted Rich's spirits.
At one point in our visit the endo doctor who is covering for OUR endo doctor came in and spent quite some time with us. She was LOVELY. She continued to reassure us that our doctors have been in contact with all their connections, including Johns Hopkins; Mayo Clinic; Ohio State; some place in Texas and another place in PA that all specialize in pancreatic cancer. The problem is..... wait for it..... Nothing about Rich's current status makes any sense. None of his symptoms (or the lack there of) are providing any information that can lead them towards possible solutions. (welcome to my world of explaining shit that doesn't make sense to people who don't believe you) It was clear that this doctor knew Rich's case inside out and more than once she shook her head and said, “there's not a doctor here that doesn't know about you, Richard. Nothing about you has ever been seen before. But we're working on it.”
We had a couple more hours of curled up in bed together and then his dinner came and he wanted me to start my 40 minute drive before it got really dark.
That's a difficult drive home. Depending on traffic it's 30-40 minutes through inner city Akron out into the boonies thinking about how much time is wasted in traveling.
Just me and the voices in the van.
It was dusk when I left the hospital to go to my van. I had my ticket, pass and cash ready only to discover that it's cheaper to provide free parking than pay for an attendant. Whoo-hoo. Free parking. I wanted to be cheery and grateful about that, but “you know who” pointed out that in the almost three years of hospitalizations I could have fed a third world nation for a week on what I've spent in fuel and parking fees to visit Rich in the hospital. In my humble opinion, a patient's partner should get Free Parking, because we can't pass Go, and we can't collect $200.
It was full on dark by the time I was half way home and it seemed that I passed way too many homes that were fully adorned with Christmas lights. “It's freakin Thanksgiving!!”, one of the voices shouted through the closed side window in the back seat. I couldn't tell if my eyes were watering from stress, emotion, or the glare on my cataracts.
I tried to focus on the concept of “it's freakin Thanksgiving!!” The oncology floor was nearly empty today. I remembered Rich telling me how they were scrambling all day yesterday and this morning to discharge patients home for the holidays. When we strolled the floor together before I left we counted no more than 10 patients roomed, and it seemed that they were patients too old to be aware or care.
I kept driving past joyous-lit houses, some with triangular trees sparkling from front windows. After awhile I felt nothing but confused. It seemed I was driving though a Black Hole of pitiful attempts to rush intention in order to prolong time. Let me know how that works for you.
Starting earlier in order to make It last longer does not make It better. It doesn't work for Weddings, or vacations or Christmas. Starting earlier to make It last longer, just dilutes It. Magick occurs in moments and flashes, not weeks of frenzied effort to squeeze, stretch and strangle every ounce of joy that your clenched hands can grab.
This is the conversation that “we” had in the van on the way home from our thanksgiving dinner, driving past the premature Christmas lights, on our way to a place where we can figure out what to do next, wishing desperately that we could slow time down in order to hold onto the precious memories that are slipping through our fingers.
Happy Valentine's Day
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