July 29, 2022
20220809 744am final edit, kitchen table window cracked // 20220728 801am, beach house top back patio in the shade with Schenley while everyone plays tennis, post-sunrise and duck’s cottage for decaf coconut crunch, t joe’s cherry poptart & Ezekiel toast with that 88 acres chocolate sunflower seed butter that dad liked, Carnegie Stacks, LvF, FvR –continued/edit from original write. // 20220729 748am second poptart black coffee couch bon iver faith the album leaf outer banks big country bela fleck your ex-lover is dead
For the two weeks in between my arrival at his bedside on Friday June 17 until his passing on Friday July 1, I enjoyed a hospital shift routine that made me feel as cool and in-the-know as a full-time Shadyside Hospital employee. Enjoyed is a strong word choice, but aside from the fact that Dad was so sick and uncomfortable, it was indeed incredibly enjoyable to spend so much time with him, and I know he felt the same way because he thanked me for being there. It was very grounding to be together, even under the circumstances, because for many years I’ve cradled a massive fear of not being able to get to him in time during a possible end-game scenario because of something like I was living too far away, traveling, or something else like Covid got in the way. (Actually, in my small handful of life dreams, having dad walk me down the aisle was one of them, and being there when he passed away was another. A little morbid and perhaps movie-tropey, but it meant something to me. I can't believe I got that one.)
He got sick when I was a little kid. I believe my fear has been a reasonable reaction. I also believe such fear helped me live a better life both with him and with other people: I don't generally leave things unsaid, or at least I try incredibly hard to make it that way, and I live a pretty balanced carpe diem lifestyle. I'm not discovering new ground here when I say love is really the only thing that matters in the end, and that's a very significant takeaway when you've ruminated on death for so long. I know, I'm bragging, I'm very emo and very cool.
Yet, as much as I’ve made extra effort over the years to make sure I was spending as much time as possible with him by coming to Pittsburgh for holidays and random weekends, going on annual Chautauqua Lake family vacations and all other possible trips with him and Mom, getting up early to chat down from my bedroom window while he sat below and fed the birds and smoked on the back patio, staying up late to sit together in the backyard or in his basement room to play cards and chat about life and movies and books and music and family stuff and anything/everything, and texting and FaceTiming him regularly for fun or to teach me how to fix something else around the house - as much as I’ve done all these things with the knowledge that every conversation could be a last one, I still wanted more time with him. That’s one of those poignant quotes people recite back during the grieving process: “No matter how much time you’ve gotten, you always want more time with the person.”
So even if this final chunk of time together was pretty much just spent with nurse-esque caregiving like trying to adjust his pillows and bed angles to make him more comfortable (unfortunately often in vain), coming up with new ways to suggest he try to eat a little bit of anything so the meal trays didn't keep going back empty, or quietly watching Seinfeld on a portable DVD player over a cafeteria brown rice bowl while he either was listening with me or sleeping through my whole visit, it was still beautiful time together and it warmed me up in a way I needed.
We held hands. I stroked his hair and that furrow line above our eyebrows. He slept, sometimes. It was hard to tell if he was asleep or not because he wasn’t always able to talk back when he was awake. When we did chat, it was sometimes loopy from delirium and meds, but also sometimes lucid, especially when he rallied that one day. That was a heck of a day.
So I said we didn't always get to talk, but sometimes we did, and he said of all the sicknesses he’s ever had, none were ever like this. This cancer went straight to his head, straight to his thoughts. “It’s never been like this” was kind of a quote he told my sister one day.
Strap in because I'm going to wax a little poetic here to drive home a point about this: Dad and I talked a lot about his thoughts and how his thoughts are not him, he’s something much deeper than that. Joseph Plazek is something so much deeper than these cancer/delirium thoughts. (I can attribute that insightful gem to my yoga teaching training at the most unique yoga studio I’ve ever found, KYKP / Know Yoga Know Peace in Bloomington, IN. Our physical studio didn’t make it through Covid but it lives on much stronger in me than mere memory: the teachers there filled in gaps I wondered or didn’t even know to wonder about, in terms of body-awareness and mental-awareness, like that gem.)
We’re not our thoughts, our thoughts come from our computer brain trying to figure out reality – if that doesn’t make sense to you, there are a lot of examples to exemplify it, but here’s one: when you’re driving and you think something insane like “It would be so easy to swerve a little and hit that pedestrian”, that’s not you and who you are. And you probably know that. It's simply your brain flitting around with curiosity or experimenting like it’s made to do to help keep us alive. We’re something so much deeper than our thoughts. Thoughts are just messages from a computer brain, with lots of options usually.
So I talked with Dad about it: I reminded him that the man who fought for 24 years to stay optimistic and calm about his health was in there. He was in there somewhere, and I was right there at his side while he tried to find him. I wish I could take this new, scary, mental pain away from him, but it was the cancer affecting another organ, his brain.
The thoughts weren't just the cancer itself, it was also the delirium of being in a hospital – not to mention the effects of dehydration, starvation, lack of sleep, drugs, and pre-chemo immunotherapy (I might be forever mad at the hospital for neglect in some of those basic needs that could have been improved, but I’ll refrain from a tangent right now). All of these things were affecting every single organ, including his brain, so it was sending out thoughts and feelings during this malfunctioning and duress, things that weren’t normally like him with his optimistic, calm superpowers. But it was just an organ short-circuiting, just a lightning storm. The thoughts weren’t him. The thoughts are only thoughts. I'm being a broken record here because I was a broken record with him and it helped bring home the point so much that he'd even repeat things back to me. I told him he was so safe and so loved, and that everything was okay, quoting that lullaby he wrote for us kids. All of this is easier said than done, of course, but I think he liked my makeshift coaching because he would respond “okay” and close his eyes and really, really try to think better, deeper, stronger thoughts. It was super cute. I’m very proud of him for trying so hard.
One repetitive theme was a fear that he admitted to me: he felt alone. This was obviously heartbreaking to hear, and potentially easy to take personally because I & my family were there so much, but he wasn't out of character *that* much (luckily) - he had to have been feeling something that I have no reference point for. Swimming in a dreaming abyss, toeing the line between consciousness and the "other side" of whatever life is, or something. And while, yes, it probably was something existential, I think it also had a lot to do with being literally alone at night: the hospital had a 9am-9pm visiting hour rule. Who likes being in a hospital at all, let alone away from their loved ones in a hospital overnight, arguably the scariest and darkest part of the day? Anyone would feel this way at least a little, even the biggest introvert craving alone time, whether they admit it to themselves or not. Too much of anything, you know, especially during such a sensitive time.
On the way from the funeral home to the funeral I started writing a song about that feeling of alone Dad told me about. In the hospital I devised a game where I'd go: "Pop Quiz. When you think you're alone... what?" and he went the extra mile and started to answer "You're never alone" instead of just saying "You're not alone." I hit record on my voice recorder only once during our hospital adventure, when he was telling me the chronology of his radio career timeline (I wanted to make sure I got all the details in order), and I caught us playing that game. I have that recorded forever now. I'm going to use that in the song when I make the beat around it.
Although across those 2 weeks I ended up doing 4 overnights while he was in the ICU or under CMO ("Comfort Measures Only", I’ll explain it), I/my other family members couldn’t be there so many other nights like I/we wanted to be, and it seriously affected him. That 9am-9pm rule sucked. Yet, I also respect Covid precautions because I lived a unique, yet common, hell the past 3 years worrying about Covid snatching my dad from us early (after all those other medical miracles! what the hell!), living with the guilt of giving it to him accidentally when asymptomatic (I don't know how I'd move on from that), or preventing me from seeing him because either I had it or he was in a ward with no visitors allowed (I feel so, so terrible for all the people who went through this.) However, I knew there was a chance that these were the final nights I could spend with Dad, and so I came every night I was allowed, and a couple nights I was supposed to be allowed but there was a miscommunication with the doctors.
The (first) time the doctors told us this was most likely end game, I was woken up that night around 130am by my dog barking for no reason, and I listened to my gut and drove straight to the hospital. Not being able to fall back asleep once I'm woken up is my trademark stress-insomnia symptom anyway. When I got there, I walked into the room, Dad was surrounded by nurses, and when he saw me he broke out joyously/desperately with "Oh Emily, you came, God bless you!!". I'll never forget that look of relief on his face. He said he'd just died, when the clock said 13:23 (which I don't know if I'll ever totally forgive the nurse who talked to me in the hallways afterwards and rolled his eyes and laughed at Dad saying that). He started his rally when I got there: he was so, so, so alert & talkative, it was a 180 after the day before when the doctor sat mom and my down to tell us "the realistic truth". It looked like a miracle.
I didn't know about rallying yet so I texted my mom the great news and she quickly burst my bubble, reasonably, by texting back an article about the topic. I swallowed my disappointment immediately and just let us enjoy it. We stayed up talking all night, he didn't want to sleep, and the next day all of his children and all his siblings came to visit one by one, and he tied up all loose ends. We talked about how it was dialectic, two opposite things being true at the same time: "we 100% believe in you surviving this, but at the exact same time, why not also tie up all your loose ends and get rid of that stress." He wasn't scared. I wonder if he knew he was dying at that point, because he put on such a brave & naturally Joe comedic face for all his visitors, to put us all at ease. I bet he kinda knew, huh. He did good. What a fun sleepover he and I had that night, talking till the sun rose.
I would've been there every single night, but like I said before, there was a miscommunication with the doctors. The real kicker was that the Palliative Care doctors had given me not just the green light but the original *suggestion* to spend as much time with him as possible, like overnights. But those doctors didn’t put their overnight permission in writing, so I had to fight hospital staff really hard to be allowed to stay at all that night and other nights. It was hypocritical of the system, and put a massive toll on me. It sucked.
Now, I've mentioned "Palliative Care" doctors, but those weren't his only docs. If you've never been in a hospital, or with a loved one in a hospital, here's a reference point of what the whole lifestyle looks like:
We'd have these teams of doctors come in and out about once a day to check on the individual pieces of his health like the cancer, kidneys, heart, etc. I do not believe they all got together in a conference room to discuss Dad's case like you'd hope they would, like a team. They worked on their own puzzle piece, their specialty, in relative focused isolation, reading some of the notes in his file though not all of them: my dad's file was complex and thick so we noticed easily when a doctor had read everything or not.
Not to sound like a whiner here, but it did happen multiple times where we had to correct or remind them about something, so this serves as my way of extending a suggestion for anyone who ends up in a caregiver type of situation: stay involved in the conversations with doctors, don't just blindly trust all the decisions being made. Respect their expertise in matter you yourself didn't go to med school for, of course, but also keep advocating for the sick person, because mistakes do happen. The same tests can be run multiple times, for no reason except the doctor didn't see it pages and pages into the chart. Ask questions and don't worry about being called something like annoying or a Karen. That's a thing women get pegged for sometimes inaccurately now because it's such a strong internet joke, but it shouldn't deter you from being direct and staying involved.
This is perhaps going to sound strange or crude coming from me if you don't know me that personally, so I apologize to any sensitive readers, but on rare occasion it helps some of us, especially women, to be able to pull out some very big dick energy. Fighting doesn't always look like yelling, it can be done creatively, very calmly, and directly. It's mostly about not being appeasing in the common attempt to make peace/make the other person like you (a common human instinct) when the situation is too dire. I had to fight a few things - some of them in conversations with doctors who acted pretty dismissive of me until I requested an eye-to-eye conversation in the hallway and asked all my direct questions. Whether it was a gender/age thing, or their callousness towards whining family members, or both, I don't know, but I was far from whining, and my questions and points were important and incredibly valid.
The saddest part was that we had to fight to get him fed in his final days. Fed. Like, food. Like, a dying, cancer-fighting man was hungry and passed aspiration tests (not breathing in food instead of swallowing it) and his teams were too distracted and busy to help us get him food. This happened so many days, where they promised they'd prioritize it and then the hours would tick by until visiting hours ended and we had to leave but nothing had changed and he was still begging for food, that I wish I had stepped forward with urgency the very first day it happened. We were so scared of breaking rules or putting him in health danger at first, that we put too much faith in this aspect of the system. They did not take care of him in this sense, at all. Was it because they knew he was dying anyway? Oh I only just thought of that now. I've never known this type of anger in my life until now. Huh. What a feeling.
One doctor told me the honest truth that the aspiration test we were promised a few days ago had unfortunately never even been put in the system - she looked at the computer screen and then showed me. It was one of those instances similar to an emergency (although they didn't act like this was urgent at all) where everyone is saying "call 911!!" and then everyone assumes someone else did it, so no one does it. There you go, that's a YMCA fitness instructing First Aid training tip from me to you: you have to point to someone specific and say "YOU call 911." I wish I had known earlier that same general phenomenon was going on with feeding Dad. I'm not even going to let myself say something of humble unimportance like "I know hospitals are understaffed right now" because I did indeed say that a few times to be kind and understanding, but got a response of annoyance that this wasn't true - either way, Dad had equal importance to every other patient, and this was unacceptable lack of care.
I'm especially glad I had my mom and sister with me to logic through these complex situations, because now I understand the dialectic of following rules vs. sometimes needing to break them. Meaning, a nurse told us a story about a patient whose family brought in a burger and fries, but the person hadn't passed an aspiration test so he breathed in the food and the whole thing got really serious and scary, he might have died, I can't remember - and that story scared us at first from feeding Dad on our own. Didn't seem like one of those situations you could beg forgiveness, not ask permission, you know?
On the exact same hand though, these were probably the last days of Dad's life and he was extra sad about being starving, so giving him a couple small spoonfuls of my chocolate nutella-esque sunflower seed butter was a reasonable decision while hours and hours passed and no nurses and doctors got back to us with promised aspiration tests & immediate food. I did a lot of running around, following the system's rules of getting permissions before I broke the rule. I'm pretty sure at one point a doctor said without saying that it was okay to break the rule at that end-life point anyway, a "I'm going to leave the room now and I won't see it if you feed him..." kind of thing. When we decided on CMO the final day of his life, we were allowed to give him anything to eat anyway. It's called Comfort Measures Only for a reason.
He wanted chocolate ice cream, and my brother got it for him from the cafeteria. His last words before the CMO morphine drip were something like "More" to indicate he wanted another spoonful of ice cream from my brother, and "Straw" to ask my mom for a little more water, and "Thank you" when he'd finished.
Part 3 coming soon.