Dear Hilly

Dear Hilly, What does it mean to be our best selves, when life brings the walls in closer and closer? I think it means calling it lucky to grab 5 minutes on the porch and hear a white-throated sparrow in the trees. To see a junco under the feeder, finally, and be grateful for that one. To buy more bird seed and log it under “entertainment” in my budgeting app. And to dance at 10am, because you can. Love, D.

Throwing it all at the Wall

I throw a lot of words at Mark all day. I’m not the chattiest person, so this is not about endless conversation. Rather, I’m frequently just provoking him to get literally any reaction. He spends a lot of time sitting and staring. Without good eyes, you can’t read. Without good ears, you can’t easily enjoy TV or a conversation or music. Without good energy, you can’t easily find stimulation outside the house. I’m simply trying to keep his brain active. Alma describes this approach of mine as “setting Mark up for the spike.” I’ll say something random and of no consequence, with very clear available options for a response, and then say to Mark, “What do you think?” or, wryly, “Am I right?” Mark’s responses vary from “what?” because his hearing isn’t good, to ignoring me, to giving me the answer for which I cued him up. Sometimes he comes back with something surprising and delightfully witty.

Last week, I was trying to get Mark to eat (daily challenge) and to take his medications (periodic challenge). I handed him my latest goopy smoothie into which I’d snuck about 1100 calories. He glanced at it and wrinkled his nose at it in utter digust. “Don’t kill the messenger,” I began. “I’m Paul Revere!” I was picking up steam. “I’m riding through town shouting ‘The British are coming! The British are coming!” and then for dramatic flare, I included “It’s the shot heard round the world!” Now, I really don’t know why I think all these distracting non-facts will get him to take a sip of a brownish green smoothie. But really, it seems completely random what does make him take that sip, so I throw a lot at the wall to try.

A few months ago, when Mark was still in skilled nursing, he told my parents that he was looking forward to my nephew Aaron’s wedding next summer. “Aaron’s getting married?” my parents were confused. They are Grandparents in the Know. “Oh,” Mark said. “Maybe I just made that up. If I make up enough stuff, some of it will hit the wall and stick.” A tiny little glimpse into his secret mind. I find myself giving it a go.

‘It’s the shot heard round the world, Mark!” I repeated more loudly. Mark looked over at me with a look that was somewhere between perplexed, bemused, and annoyed. He didn’t answer me. Alma and I cheerfully launched into researching the phrase “shot heard round the world” (Mark remembered baseball; I remembered history). And then Mark proceeded to ignore my request to take a sip of the smoothie.

This morning, we were sitting on the couch with our beloved dog, Duppy, and Mark’s oldest, Michael. Michael loves Duppy, and was giving her a lot of pets before he heads back to college today. For no reason at all, other than to provoke Mark, I started singing the theme song from The Love Boat. “The Love Boat, soon will be making a lot of love…The Love Boat, promises Duppy a lot of love, I riffed. Mark didn’t respond. I persisted. “The Love Boat, promises something for everyone…” “Even Duppy?” Michael asked. I said that silky little Lila dog brought Duppy love. Michael said he wasn’t so sure they loved each other. I said they were working to achieve peace. “The path to love starts with peace, right, Mark?” “What?” he said. We were sitting right next to each other. “THE PATH TO LOVE STARTS WITH PEACE, AM I RIGHT?” I repeated loudly. (Quasi-yelling those words really takes the romance out of the statement.) “Starts with ‘quiche’?” he said, perplexed.

I’m calling this conversation a success.

Great News!

Early on in this cancer journey, things were chaotic and changed everyday. I tried to keep family and friends in the loop by sending group texts and posting on Facebook. Often, I thought I was providing information that carefully conveyed the precarious hold Mark had on life. “Mark’s out of surgery and is on a ventilator.” “Great news!” I’d get back from people. In confusion, I’d go back and re-read what I wrote. Did that somehow sound great? Because to me it was terrible. I read VENTILATOR and they read OUT OF SURGERY. “Mark’s urine output is good.” I read between my lines “HE’S GOT A CATHETER AND CAN’T STAND UP” and they read “GOOD.” “Mark’s strapped down because he keeps trying to pull out his IV.” Me: “HE’S OUT OF HIS MIND!” Them: “HE’S SAFE!” Chipper “great news!” texts and comments started to crack me up, in the way that you get really loopy when you are exhausted and stressed beyond any reasonable level. My friend Kim and I started joking about this a lot. I’d text her something like “Mark’s eye is no longer bulging” and she’d reply “Great news!” when really, the fact that it was ever buldging was still a horror burned into my mind.

And so in that spirit, I share that today Mark reached the 30 lbs lost mark since all this started. Between last week and this week, he’s lost 3 lbs. This is despite my amazing shakes, including my most recent triumph of getting him to drink a shake made of Ensure, Boost, PB2 powder, frozen cheeries, a banana, and a Dunkin Donut Munchkin. I told him about his weight loss today, as I offered him an Ensure that he declined, and he said “well, that’s better than gaining weight.” NO, IT’S NOT! It’s not great news! Sigh.

Goodbye Furry Distraction

Dear Mother and Father, I’m excited to see you soon! Fake Mom told me that you had an amazing trip and that this time away meant a lot to our family. I just wanted to update you on a few things about me. First, Fake Mom accidentally dropped a pitted kalamata olive on the floor, and I snatched it up really fast. I loved it! I promise I didn’t throw up at all. Fake Mom is a science teacher and so she did a little experiment and we learned I like sliced canned black olives and …See More

Dick Clark is Dead

Most days, Mark does not look at me very often. He stares into the distance, looking straight ahead at nothing at all. He does not initiate conversation, nor is he very responsive to it. He is here and absent all at the same time. It’s impossible to know what he is experiencing. Is he listening? Is he thinking? Is he feeling sick? Is he bored out of his mind? What does he need? Yesterday, New Year’s Day, I woke up and came out to the living room, where he was already stationed in “his spot” on the couch. He had the heating blanket wrapped around his shoulders, and he looked me straight in the eye, and said, “How did you sleep?” Now, this is not much, but it’s not nothing, and nothing is what I’m used to. I answered, asked him the same, and assumed that would be the entirety of the exchange. I made a cup of coffee, picked up a book, and started to read. I looked up a few minutes later, and he was still looking at me, clear-eyed. He asked me how we had spent New Year’s Eve. He had spent it sleeping most of the day, and was in bed by 7:30 pm. Michael, Alma, Adam and I spent 10:00 pm – 12:30 am hanging out talking and eating shrimp and cheese, crackers and pepperoni. At 11:00 pm, we turned on the TV. At midnight, I poured Michael the tiniest glass of blue champagne (that’s what happens when you go to the liquor store at 5pm on New Year’s Eve and expect to find any champagne left), which he refused and poured back into my glass. He also refused my attempts to convince him that it would be a fun family activity to make him a Tinder account. He’s very hard to corrupt, which is admirable. And which I see as an entertaining challenge. There was a lot of laughter and fun.

Mark said, “What TV show program did you watch?” “Dick Clark’s Rockin’ New Year’s,” I said. “But Dick Clark died.” Mark’s eyes immediately welled up. “Dick Clark died?” he whispered, and started crying. I did not tell him that Dick Clark died in 2012. I asked him what he was thinking about. He said, “memories.” Mark spent the next hour with me. Meaning, Mark was here here. Not the vacant here, the present here. We had a difficult and honest conversation. He cried at the thought of his kids starting back up at high school on Thursday. He cried talking about how his former wife, Kristin, made fighting cancer look easy and that he now understands it wasn’t. He said he’s scared. He cried over his fear that the only memory his kids will have of him will be of a “doddering old fool.” He was raw and he was afraid.

Mark stayed present most of the day. He chocked up telling Michael that he hopes he’s really aware of and appreciating all the food people are bringing. He chocked up when Alma’s boyfriend, Adam, said goodbye to go spend the rest of his college break with his family in Florida.

A few years ago, I decided to be a hospice volunteer. In the training, the facilitator said that while it can be hard to know what to say to patients, you can always say the one thing that all patients long to hear: “You are loved. You are good.”

It was hard to navigate the day with Mark. It was a gift that he was more alert and aware. And that alertness meant that he was feeling all the pain and loss of his situation. All I could do was to try to focus all my support on those two ideas, to communicate to him that he is loved, and he is good. It’s what we all want to hear.

2019 Made Me Tired

I’ve stayed quiet on Mark reports out of respect for the holidays. We have had many happy moments with the kids, and so much good food. The tree was the best it’s ever been, we have this adorable rental dog, as I affectionately call her and as you have perhaps seen, to distract us. Now the Pittsburgh grey skies have set in to hold us captive til about April. Mark is on week 4 of radiation. He just completed another 11 hour day of radiation and chemo yesterday. The side effects are setting in on schedule. He is exhausted and a tad confused. He’s having a harder time swallowing. That’s because the radiation zaps the salivary glands and makes his saliva thicker as well as reduced. His vision in his right eye is declining again. That’s because that pesky tumor is hanging out right by his right optic nerve, and even the fanciest of radiation machines and the most skilled of docs and technicians can’t dose the tumor and not the nerve. He’s having a harder time hearing. That’s because the chemo drug, cisplatin, can accumulate in the ears. To try to move more carefully down the rabbit hole of hearing loss, we are switching him to once a week smaller doses of cisplatin rather than a whopper dose once every three weeks. That means more 11 hour days at the hospital, but keeping a more careful eye on his hearing. He has no appetite, and while I am getting pretty good at sneaking calories in (if I offer you a shake, unless you want it made with high calorie Ensure, PB 2 powder, and half and half, you should decline), he’s still losing weight. That’s because the radiation causes enough cellular havoc that his calorie needs are even higher than normal. He’s cold all the time, and all his Christmas presents were about heat. Electric blanket, hot packs, neck warmer, portable heater. The more uncomfortable Mark gets, the less easy of a patient he becomes. Sometimes the only person that can get him to take his meds is Michael. It makes me worried for Michael as scenes like last night’s play out, with Mark very confused and refusing his meds and Michael and I together having to figure out how to convince Mark to take them. That’s a lot for a 19 year old kid. All these facts lead to one obvious conclusion: things are hard, and they are going to stay hard for a while. Maybe all of the grey sky season. All we can do is accept it and keep going. One foot in front of the other. Ever onward, Diane

Lila Dispatch 5

Dear Mother and Father, Next to Fake Mom, Mark’s caregiver Bobby is my favorite. He’s covered in Jesus tattoos, has the best stories, and sneaks me treats. Bobby tells Mark that community keeps us strong, and I like that because I’m staying strong with support from this new family, too. Bobby reminds me that love is all you need. And pasta. Love, Lila

Lila Dispatch 4

Dear Mother and Father, This is the seventh day of my dedicated study of Chanukah. I only understand the word “amen” so far. My favorite parts are the candles, the smell of gelt, and that Fake Mom lets me join in. Can’t wait to tell you all about it! Love, Lila

Lila Dispatch 3

Dear Mother and Father, Fake Mom set this plate in case a friend or Jesus comes. Adam says it was first for Elijah before it was for Jesus. I’m hoping it’s for me. I request leftover ham. Fake Mom says I’m missing the true meaning of Chanukah and Christmas. They love me anyway. Love, Lila