Our Last 2 Weeks Together - Part 1 (Funeral Week Festivities, Dialysis & Other Superhero Health History, Lymphoma Luckiness)

This is the story of my dad and me during our last 2 weeks together, and here's Part 1: flash-backing during funeral week festivities, to his admittance into the hospital (luckily.)

July 27, 2022

20220726 829am, OBX, living room couch with coconut duck donuts and Schenley laying on my feet

I’m at the ocean now, on the Outer Banks, 26 days after Dad passed away with me at his bedside in the grand finale moment, after our last two weeks together. I talked about it in my last notebook entry, “A Eulogy”, but that’s just the condensed version I timed to be 8 minutes max for a dress-clothed audience standing for an hour in high-noon July humidity on top of a cemetery hill. The full story is so good though. So good. I’ve now written it down, and I’m going to share it via a series of smaller, more digestible pieces while I’m here at the beach, one of my favorite places in the world.


Before I do so, I’m going to mention that the process of writing this down has been profoundly helpful. Not to belabor the points I've already made while establishing this online notebook, but I’ve now spent a lifetime huddling over notebooks to suss out my thoughts and feelings, because it changes things in your mind you can’t touch otherwise. Heck, writing is a large basis of my entire music career, and all my work with The MIC Mountain. I love it. The whole activity is underrated, especially during times of turmoil, probably partly because it’s a cliché in a therapist’s toolbox. "Why don't you try writing a letter to the person?" "Writing your feelings down can help you sort through them." Well, surprise, it's so common to hear a health professional suggest these things because they really can work. I have writing to thank for my ability to process things as I’m going through them, instead of burying them so they can bubble up later in myriad of unpredictable ways. I tame and befriend the lions and fires before they surprise me. (Nah, they still surprise me sometimes, I'm only human, but it does help me minimize it, I bet.) Also, writing is profoundly effective to me for other reasons, too: I can soothe myself down in panic or to go back to sleep, get in the zone to perform onstage, or sink down into incredible moments of life, instead of feeling like I’m missing them as they’re happening.


In general, I don’t shy away from pain or feeling massive things. I don’t mean to brag, but it is a major skill of mine. And in times of tragedy like right now, it’s a little unbelievable how much better off I am than a lot of other people around me, in great part due to writing about (1) the pain of losing Dad and (2) enjoying the last 2 weeks we got to spend together in the hospital. I was very in the moment with him and, you guessed it, one of my secret ingredients to being so present was writing: in my pocket notebooks at his bedside as he slept, in my Mister Rogers notebook in bed at night before my next shift to visit him, or on my computer notebook when my handwriting got even more out of control than usual and I needed to sort things more cleanly. I collected those field notes so I could craft this story now – and like I said, it’s a good one. So good.


I’m not going to take you straight chronological. Instead of shooting back to June 17 when I got to Pittsburgh on the morning after he midnight-transferred from Presby to Shadyside Hospital, we’ll start with me trying to write this, in the middle of Funeral Week festivities:

20220704 547am, Brandt St Kitchen Table,// 20220705 213pm & 902pm - The Plazek Soundtrack: Stevie Wonder for once in my life & golden lady, three dog night pieces of April, grand funk railroad I can feel him in the morning, everlast what it’s like, Kenny loggins celebrate me home, seal kiss from a rose, rusted root send me on my way, coconut harry nilsson, extreme more than words, alanis morissette hand in my pocket & you learn & head over feet, Bruno mars leave the door open, brandi carlille the joke, Stevie wonder knocks me off my feet, as, bruce springsteen secret garden, john martyn sweet little mystery


I started writing this one before the funeral yesterday. I had gotten up early (surprise surprise) but then didn’t finish it in time, so I took my laptop to the pre-funeral funeral home festivities and got in a little more, in a side hallway on a shiny and depressingly useless tiny desk that I bet never gets used as a desk because, again, this was a funeral home. Then I kept writing in the car on the way to Assumption church in Bellevue, which goes by another name now because of all the Pittsburgh Catholic church consolidations that happened since I moved out of town. Assumption is where my dad and I both got our first holy communions, where he built their sacristy’s furniture to pay for my sister and I to go to grade school there for a few years, and where he’d give us Cheerios from a Cheerios-shaped plastic container in the cryroom during mass.


I nestled his Greek fisherman cap against my lap as I wrote on my laptop in the car. It was his signature fashion staple. Everyone associates it with him. I hope one of these days someone in the family tells me why he wore it, because I can’t remember – I think it started when he bought one while backpacking around Europe on a Eurorail pass with his sisters when he was a teenager.

Anyway, just like most people would hope, the cap still smells like him, so that unfortunate rim of mortuary makeup along the forehead is not a big deal. I stuck around to get the cap and stroke his hair again like I did those two weeks in the hospital, before they closed the funeral home’s rental casket (new band name I call it) and started the procession parade of cars. It's a rental casket becuase he’s getting cremated, or has gotten cremated already, who knows, and the interment is on Friday. That’s the word for the part of movies where the family meets at the gravesite. Maybe it’s called interment because it’s ashes, not a full burial for a casket. I’m not looking it up. I’ll do a eulogy and we’ll put memorabilia or whatever trinkets we want into the vault with the ashes before it goes down. I’ve driven past that cemetery on Cemetery Lane off 279 hundreds of times. I’ve visited it for a handful of close family and friends. Now I have a new high view to add to my rolodex of Pittsburgh highlights to frequent when I’m in town.


Not to spit on anyone who does wear the traditional mourning garb, but I don’t wear black to any of this kind of stuff as a personal rule, because I don’t think it’s what dead people would want. Spirituality about the topic aside, and hopefully no offense to any cultures that value the custom for other reasons, it simply doesn’t add up to me that anyone would die holding onto the hope that people will miss them so dramatically that they don emo wardrobes that make the whole thing more heavy – simply because it’s not loving, and what’s left after you die except a cleaned slate like the one that love is. It doesn’t make sense to me. I’m smashing a massive opinion into a small paragraph, and I’m not sure I'm nailing it, so let’s move on.  


Either way, in Dad’s case, I know for sure that he wasn’t holding onto any lack of love like that even in his last moments, because of the conversation he and I had in the final minutes before he died.


Not to be confusing and jump around, but as I said at the beginning of this write, I wrote this little intro the day *after* the funeral, before the burial/interment. But I also wrote *before* the funeral, and I’d like to get into that now:


To start, I’ve been on the fence about sharing this "Last 2 Weeks Together" story, because at the moment it’s all mine. My hesitancy is probably less about me wanting to let anyone in, and more about the past decade of my business marketing career, watching our world manipulate and commoditize feelings. I love feelings, they’re my favorite. It’s not hard to warp feelings out of their natural beauty in order to make a sale or gain a like, so I’m always cautious when I market my music because the whole thing can get real icky, real fast. However, I’ve been doing a gut check since I woke up and opened the window to watch the light come in, with the weight of my dog’s little body laid across my chest, her snout poking against the window screen, and my instinct says this story is too beautiful to not share. It's some true reality, gravity, and pretty unbelievably perfect love. So let's keep going.


Dad arrived at Presby Hospital in Pittsburgh’s Oakland on June 7 for a heart consultation that he’d been looking towards with a laser focus for months.

However, instead of planning the procedure to replace the second valve, the mitral, they admitted him pretty immediately based on how much he’d been dragging himself around in exhaustion, for a long time – he didn’t look good. Now, in this story I’m not going to give an exact medical history describing his symptoms and everything that happened within the UPMC system because the medical details could bog this down, and anyway, this is a story about the man who taught me “less is more.” Suffice it to say, living daily with his high pain tolerance means he didn’t know he was getting admitted to the hospital that day, let alone that he was never going home to our little red brick house again.


We also didn’t know it would be his last hospital stay because he was in and out of hospitals so much over the years that it, unfortunately, felt pretty normal to us all. This was especially true this past year of his most recent heart health saga that started when I was in San Francisco last June, getting into the car to walk the Golden Gate Bridge, and I looked down at my phone to see that kind of text I always fear. He was back in for his heart, not his kidneys or some freak accident like when he table-sawed his leg while working on the high school’s theater stage lighting. (Some of his tech crew students that came to the funeral home confirmed that there's still a stain from his blood on the stage floor, and I think that's hilarious). That text began another long year of hospital visits and 911 emergencies (like a flash pulmonary edema that we thought was a heart attack and he called 911 on himself for – no, there were a lot of stories, I’m not doing him justice by only tossing out a couple in parentheses). Yet, we all believed that this heart health situation could’ve definitely been another battle he won, relatively effortlessly with his uncanny superpower of not complaining.


But then we found out it wasn't just about his heart health anymore. He was held for a week at Presby till a lymph node biopsy found Lymphoma - which is still a relatively unknown term to me because I can’t seem to touch it long enough to learn about it thoroughly, which is strange for me because I usually gobble up health education like an eager nerd. Maybe I will one day. I’m pretty sure the correct term is Non-Hodgkins, Burkitt’s Lymphoma.

They’d do a 4-week long immunotherapy of Rituximab and Prednisone, see how his body responded, then maybe start chemo. Like I said, we weren’t newbies here, Dad’s health had been up and down for I think 24 years, and again we believed this could definitely be another battle he’d win, because he’d won so many already. Plus, there’s no downside in keeping the faith and having hope. It only helps a person’s health, and it’s often a self-fulfilling prophecy, another one of Dad’s favorite concepts he put all his faith into. (Watch what you believe in, because you’ll probably make it come true. That’s a free tip from him to me to you.)


What I do know about this Lymphoma is that it’s related (at least in part because the body is always a perfect storm of many different contributing factors, and I tend to think there was more at play here, too, but it’s not worth talking about) to being on immunosuppression drugs for years to protect his miracle kidney from 2010, so the body wouldn’t reject that foreign matter inside him. This kind of condition is called PTLD, post-transplant lymphoproliferative disorders.

Let me paint a little more color into my insistence that Dad was a health superhero: He’d gotten two kidney transplants over a decade ago. One from his brother that unfortunately failed, and the other was a miracle one from a teenage car crash victim in Ohio whose parents donated their child’s organs. (Speaking of: please check that box on your drivers’ license – organ donorship is one of the most pure hearted and logical no-brainers on this planet earth, in my very affected opinion. You don’t need those organs anymore, and they can change the course of history for entire families like ours. Anyone who argues otherwise has no experience and they're hyper-focusing on some moot point. Don’t @ me.)

A transplant organ failing is devastating but Dad pulled himself together, went back to dialysis, and didn't give up. He used to say it was obvious at dialysis who was going to die: if their attitudes were downtrodden or they were mean to the nurses, that person wasn't going to make it very long. He wasn't spending his time hooked up to those blood-cleaning machines judging everyone that came in the door, but he couldn't help notice it because he himself made dialysis a fun (as possible) time by joking with the nurses and watching movies. (Dad's movie collection was unbeatable, the man loved every type of movie, which makes me think he was excellent at living vicariously through media of all types to expand his life - which is a pretty cool, and slightly rare, quality.)


Most people get on the waiting list for a kidney and don’t live to get the call that they've found a match, but Dad had a cell phone he always carried around, dedicated to only that call, and one day it rang. (Well, it also rang with a couple false alarms that we all got our hopes up for, that sucked; but it turned out well eventually, so no hard feelings.) The surgery was a success - and it happened smack dab in the middle of 2010's January "Snowmageddon" and I was the only person who could visit him at Montefiore hospital because I was a freshman at the University of Pittsburgh so I could walk up Forbes through the feet and feet of snow from my dorm in Towers. I bought a rainbow tie-dye deck of cards with smiley face on it in the gift shop because we always played cards, especially when he was in the hospital. I have one of those cards still, I just found it a couple weeks ago, so I taped it into my current Mister Rogers notebook. We played cribbage and watched the snow fall from his hospital window.

You know, I still wish I could thank the parents of that kid in Ohio. We got so much more time with Dad because of them – and Dad got to live a higher quality of life these past 12 years, because he was no longer on dialysis.


If you’re not familiar, dialysis is an exhausting, every-other day affair of sitting in a chair at a clinic, getting your blood pulled out of you, cleaned, and inserted back into you, because the kidney isn’t cleaning the blood to make urine like it’s supposed to. That means his miracle kidney also gave him a life of peeing again, which I can imagine felt heavenly after losing the ability so long. Actually, I retract that, I can’t even imagine.

Dad did many years of dialysis, which meant he had to completely change his careers, companies, daily life, vacations, and everything else to accommodate. He was sweet about it in front of us kids though, to protect us from it. For example, he didn't opt for the at-home, less-invasive dialysis machine because he didn't want us to have to see it. Instead he'd go to the clinic 3 days a week, with a strong attitude. He got great joy out of making jokes to the nurses, and he loved the portable DVD player we got him to watch movies during the 8/9-hour sessions (remember, this was the early 2000s, this was a high tech goodie we all pitched in to get him). But I've got to imagine somewhere underneath his optimism and ability to hide his pain from us, there was his realism: it was incredibly painful and draining, and he couldn't live a normal life with a normal career because dialysis took all his Mondays, Wednesdays and Fridays (and also Sundays because he was all filled up from skipping a day, so he always felt terrible). It makes a person pause and maybe take their own job and life less for granted, right? Even in his living will Dad said he'd never go on dialysis again - yeah you read that right, it was death or dialysis and he'd checked the box that said death, so it must've been worse than he ever let on.


So let me take this story back to this current one at Presby Hospital in June 2022, where even amongst the debilitating sadness of this whole final adventure, I still keep marveling at the timing that kept this from being even more of a horror story: the Lymphoma somehow timed out to decline his condition at the exact moment he spent that one week there. It’s a very aggressive form of cancer, and he didn’t even have it earlier this year (we confirmed he did not have it back in March because they crosschecked some bloodwork). He had indeed been extra-extra fatigued the few weeks leading up to this June 7 appointment, but if that was the Lymphoma revving up, it waited to unleash its wrath until a relatively safer moment, under hospital supervision.


Do you get what I’m saying? He could’ve been at home or at work, in a scarier situation. We’re a family used to driving to the ER or calling 911 for him, but what if we had gotten him in too late for lab work to come back and prompt the doctors’ suggestion of treatment that helped him stay with us for another two weeks? This is probably one of a handful of silver linings in his cancer tale, as people at the funeral home lovingly urged me to focus on – people who’ve been through cancer with loved ones and seen chemo’s effects. Heck, you’re about to read that he didn’t even get through that preliminary Rituximab immunotherapy, which was just a *precursor* to chemo, so he didn’t have to lose his hair and suffer those other well-known cancer side effects like nausea, "chemo brain", mouth sores, appetite loss, etc. In fact, he got to die with his hair and beard! He loved his beard and was so proud of the times he grew that little ponytail; we even debated putting his signature Greek fisherman cap on him in the casket because he’d maybe want to show off his hair, but ultimately the hat was too “him” to pass up, and it did indeed prompt a lot of compliments because it was “so Joe.”


That’s all to say that this man had an extended health history of incredible survival, and these last couple weeks may not have been enjoyable, but maybe there were the lesser of evils in other ways we’ll never know.


After one week at Presby in Oakland, Dad then got transferred to Shadyside around midnight. That was almost exactly when I arrived in town, a little delayed because my puppy Schenley had been sick that same week. So I met him on Friday June 17, his first morning at Shadyside, where I walked into his first of the five rooms he'd be shuffled between during his time there, not knowing it was the beginning my last two weeks spending time with him in person.

(Next part about what I did at his bedside and in the hospital, to be continued - in the meantime, enjoy this spicy and fun bulletin board from the oncology ward.)

My mom didn't know the song reference lol.

Return to my notebook.