There will only be one section for Chapter 15 because it is enough. I wrote quite a bit as I edited the original post, which I haven’t done before. The process of writing this, editing a year later and revisiting is quite emotional. To relive the last few days, well I think it’s probably the most important thing I could do for myself. I cherish these posts and I hope you find them valuable and if so please share them. Thank you for reading and/or listenting.
Chapter 15 –
By 2pm on the 10th, the Doctors were clear that whatever was going on, whether infection related, or treatment related, her body was not responding to the antibiotics. What wasn’t ever said, the entire time, was that it might not be the cancer that was killing her. This would be said and when it was said it was casual, said by a doctor we didn’t know, almost in passing, like it was the 1,000th time they’d seen this treatment killing the patient. She was so casual. It’s the strangest thing, even now. All this. Everything for the cancer and it’s not the cancer that killed her.
Does that mean treatment was successful? Does that mean we did the right thing?
There was talk of intubation this day, to allow for some exploration of her lungs, maybe to draw physical samples of whatever was going on. She had already been transfused, she’d been on antibiotics, bags of them, chest x rays, MRI’s, CT’s, blood cultures. For me, brutal, brutal stuff – for her too, but in her own way. Regardless, she persisted, she went through each test, some with tears and hesitation and all with determination. She fucking did them, she took the needles, she took the scans, she took the poking, this arm, that arm, her port, another bag, oxygen up her nose, dry mouth, lines, cords, beeping, buzzing, vibrating…she took it all, five days before she died and two days before she went unconscious, like a fucking champion.
I can’t help thinking it now. I can’t help thinking about how she did it, she was a champion in the arena but was it her arena? Does the arena matter? I think she found herself in an arena that was scary, foreign, and hopeless, this cancer pool, this cancer club, a place she realized she chose, hoping for a miracle. She found herself in this hopeless, foreign place and made it hopeful, familiar. Those that really knew Sally knew this about her. She made everything hopeful and familiar, that was the best of what she brought to the world. That’s why she’s a champion.
By 4pm, on the 10th, the doctors said more tests weren’t an option, she wasn’t strong enough. Sally and I had spoken before about intubation, and she didn’t want it anyway. Looking back I remember the feeling of this conversation so clearly. It felt like togetherness, control, choice…which I suppose it was. So strange, our human lives, our human perceptions, even at the last, at the end, we have choice, always, always choice. Still, the doctors let us know. They would instead up the anti-virals, anti-fungals and the best we could do was watch and hope.
During most of this time Sally was out of it. We had our moments of talking but she was completely wiped and battling with death in the final way, the way she never wanted to. I would touch her arm and get close to her and say, “hello” and ask her how she was. I would gently mention Jake’s name to her or tell her I needed her to look at me and she would open her eyes and look at me. I would ask her if she knew where she was and what was going on and she would nod and say she did, and I know she did. We would have a soft caress and she would go back to sleep.
I still wonder about these last interactions with her. They always struck me as strange because she would seem so content to close her eyes again. I never, almost never experienced her as frantic or confused during these close times. On January 10th she was so close to being gone and yet she would look at me, clarity in her eyes and she would address whatever was needed or wanted and then, as if she knew she would see me again, see Jake again, she would close her eyes and go back to sleep. This was comforting to me as much as it was a mystery. And thinking about it today, she was often like this in her life, in her healthy days, she would attend to me or to Jake or both, and then off she would go. “Are you ok, Sal”, I would ask? “Yes” she would say and off she would go. Sometimes I would think to myself that I would not be ok in the same situation and so maybe she was not ok, but she communicated with more than words and in those times, she had a way of making herself ok, even if she wasn’t. But this was vintage and deep, Sally. This is part of what made me love her, made me commit to her, made me in awe of her. As fearful as she could behave, there was a place deep in her heart and her soul where she knew things were going to be ok. Amidst the worst chaos, amidst unwinnable odds, amidst terrible injustice, existed in her a place of true peace. I’m confused as I write this, but only because I am more limited than she in this realm. Because my intellect cannot compete with whatever she had, it can’t touch it, in fact, it’s merely a part of it and in that sense for me to understand is impossible. And so my language, understanding, is made inept and childlike in the presence of her knowing or better, in the presence of her goodness. I don’t even know if that’s the correct word, but it’s close. She could turn away from me at death, even turn from Jake, without turning from us…while carrying us with her, I don’t know how else to say it. It was like, in those times, she was bigger than death and so therefor death was not to be feared. Could it be that she was simply delusional, simply so afraid of death that she performed well, keeping the terror at bay, lying to herself that this was the end, pretending that obviously she was going to walk out of this hospital and fulfill the promises she made to so many for so long, that she would see them again, that big plans were to come, that she was going to beat this!? In those softest of moments, when she had almost no power, when death was laying with her, and she would come to me with clarity, fully present and then, turn away…maybe…maybe her belief, her presence, her knowing…maybe it was too big for her, also. Maybe it was all ok, forever, always, no matter what, no matter even how she felt, how she feared, how she lost…no matter what, maybe everything was always ok. I think Sally would agree. The greatest tragedy, the greatest injustice, could not change it. Maybe everything was always, ok?!
(This paragraph was written on April 13, 2024 in the middle of editing the rest of this section. It’s the first time I’ve added to a post before putting it on Substack and I could have never written it when I originally wrote this back in 2023.)
By 7pm she’d worsened, her oxygen levels weren’t keeping up and the doctors let us know that if they dipped below 85 for any duration, they would have to take her to the ICU, this was Miller 5 protocol and added another layer of reality and, in a way, simplicity…but simplicity for the saddest of all reasons.
Going to the ICU meant more cords, buzzers, probably a mask that made it impossible for her to talk or feel soft touches, in a bed surrounded by machines, a place where it would be difficult, if not impossible to see people. We did not want to go to the ICU.
They did have a solution which was a higher volume O2 machine but that also had limits on the amount of O2 they can give. If she needed more, she’d have to go. This was harrowing in the sense that I was certain the ICU wasn’t the right place. Sally and I had spoken about this in general terms before and we were able to talk again this day. We agreed, no ICU, but the agreement, acknowledged or not carried other consequences and this was really the essence, for me, of what we were facing, the fact that someday, sometime, we were going to have to say goodbye and that maybe that time was actually here. We didn’t talk about this when we made the decision this day, but I think she knew.
If we weren’t going to the ICU, it meant that if she worsened, if her levels didn’t come up or she needed more O2, she wouldn’t get it. It meant that, in a sense, by keeping her on Miller 5 instead of the ICU, she would die, here, on Miller 5, in this room. We’d never been so close to the reality of that decision even though it’d been with us, lurking for the last six years. My attitude and I think hers as well on the 10th, was refusal to let that reality in…it was closer than it had ever been but it’s only in retrospect that I can see how close it was. However, none of that changed the urgency of our time that day and night, it was as if time slowed (and this happened a lot) and we went into mini, tiny, micro victories…each hour, each minute, each breath…these were victories, and like all victories they allowed for hope.
And so it was. Wait and watch and hope, and we went into the night of the 10th. Jake was home, I wasn’t leaving again and so there we were, the two of us. I slept in a chair/bed (if you know you know), and remained close enough check her vitals by simply opening my eyes.
She fought with the oxygen. They say this is common. She would reach up, grab the tubes, pull them out, if I didn’t see it right away, I would hear the alarm. I’d get frustrated. Even now, even at this point. Don’t you know, baby? Don’t you know this is helping you live? But I would be gentle with her, like a child, always, for this last year, like a child and put the tubes back, kissing her forehead, telling her I loved her but, more than anything…knowing it. She would take it out, I would put it back, out, back, out back, for a good amount of the night and then, around 3am she settled down into a more restful sleep, the alarms ceased, she didn’t grab for the tubes and we both slept.
Edited 4/13/24