Musing on love, loss, uncertainty, and one heckin' good doggo
Comic: How to respond when someone misses the point

A journal of cancer, death, tears, and laughter

Seven years ago today, my Dad died, six months to the day after he was diagnosed with Stage 4 stomach cancer. From the day of the diagnosis, it was clear that there was no chance of a cure. As these things go, it was kind of the perfect way to say goodbye to someone you love… we knew he was leaving us soon but we had enough time to squeeze in a few more stories, a few more hugs, a few more laughs, and an epic family vacation to Disney.

Living through the experience of losing my Dad in 2013 taught me a lot about love and being grateful for what you have, which is something that’s on my mind pretty regularly in 2020 too, as we all navigate redefining our lives during a global pandemic.

In the six month period between his diagnosis (February 2013) and death (August 2013), I flew from my home in Seattle to my parents’ home in Florida as often as I could to help out and spend time with them. I also kept a journal where I’d jot down my thoughts and record some of the things that happened along the way, especially anything that made me laugh. Writing things down also anchored me and helped me track the passing of time. Ever since 2013, I’ve been meaning to tidy up and share parts of what I wrote more broadly, and 2020 seemed like the right time to take that on, so here you go:

February 17th, 2013 (Seattle --> Florida)

Got a call… Dad is in the hospital. There’s a “suspicious lump” in his stomach. I’m now on a red-eye to Florida to be with Mom & Dad in the hospital.

February 18th, 2013 (Florida)

From here on out, I think my life will be split into two parts: the first part, where I didn't know for absolute certain that my Dad has cancer, and the second part, which will start whenever the damned pathology lab gets back to us with the fucking test results that confirm that he has stage IV cancer because we all fucking know that's what it is.

February 19th, 2013 (Florida)

Fuck cancer.

February 20th, 2013 (Florida)

I keep catching myself thinking maybe he will be one of the lucky ones who makes it... But I squash the thought as soon as it pops into my head. I wish my brain would stop doing that to me, it knows better.

I also keep finding myself looking at people around me and thinking things like "if you don't have a loved one dying from cancer, fuck you." Sorry, folks.

I feel like I'm playing a video game right now on hard mode – and I’m not even the one who’s dying. Dad’s still got his million watt smile:

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February 24th, 2013 (Florida)

“Our bathroom smells like cancer”, Mom said today.

February 25th, 2013 (Seattle)

Flew home today to share the news with the kids that our spontaneous trip to see Nana & Granddad was because Granddad has cancer and is going to die sometime soon. The 10 year old burst into tears… his little sister then started laughing. I asked her why, and she pointed at her brother and then herself and said “we’re so different”. She’s not wrong.

April 2nd, 2013 (Florida)

At the infusion center. Dad almost fainted when getting off the wheelchair to get weighed. They measured his BP standing (76/48) vs sitting (104/69). CBC results back, white blood count was low. Writing that down feels like I’m writing the script for an episode of ER.

During a home visit, a nurse said “Mind if I get under your shirt?” to Dad while holding out her stethoscope. He says with a wink: “Women have been asking me that all my life.”

April 4nd, 2013 (Florida --> Seattle)

Just said goodbye to Dad… He hugged me so tight, we both knew but didn't say that it might be for the last time. Both kids gave him a huge hug too, which was nice since the younger had been too timid to do so this entire trip.

I keep trying to remember that we are "lucky" that we have such a long time to say goodbye. It is hard to feel lucky in the moment though.

My 10 year old asks me: "Mommy, what does it feel like to have cancer?" I hope I am never able to answer that question, but I’m pretty sure the odds are that I will one day be able to.

At 6:30 after a long day flying back to the west coast, the 8 year old is passed out on the couch from jetlag. I’m sitting here watching her, wondering if she will ever have to go through this process for me or David? She looks so peaceful… putting the phone down to snuggle with her.

April 22nd, 2013 (Seattle)

Hah. Remember when the biggest problem we thought we had back in February was whether or not we could convince Dad to stop smoking?

June 14, 2013 (Seattle)

Dad’s been feeling a bit better recently. Plans are starting to coalesce around one last big family vacation with him in August, to Disney World and then on a Disney cruise. Dad’s always loved Disney.

July 18, 2013 (Florida)

On the east coast for a work trip, and took a detour to see Mom & Dad afterward, while Dad was in the hospital for a scheduled procedure.

Mom: "Margie pushes on Dad’s lymph nodes..."
Dad: "I don't mind the pushing on the lymph nodes... It's when she pushes on my crotch."

These pictures were taken a few seconds apart from each other, when he said something that made us all laugh:

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July 19, 2013 (Florida)

Fuck cancer, still.

But at least this:

Dad: "God didn't put you on earth to lay up. There could come a time when it makes no sense to fight it, but I don't think I'm there yet."

July 24, 2013 (Seattle --> Florida)

I just got back from Florida a couple of days ago, but then Dad was just admitted to the hospital again with liver failure. Fuck a duck fuck fuck. Going on redeye back out there tonight.

July 25, 2013 (Florida)

Most of my siblings flew in too. Dad lays in a hospital bed in the center of the room holding court, with the rest of us in a circle around him.

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Dad: “I just wanted to thank you all for being here.”
Mom: “Good thing, because I was thinking of taking off!”

While the nurse is tending to Dad, my brother holds up a bottle of lemonade and asks her "so who do I give my urine sample to?"

There is no change in disease since the nineteenth except for a new lymph node by the splenic artery that has gotten markedly larger. And now all of us know what a splenic artery is.

I told him he looks like Darth Vader when they took his helmet off – he laughed. Good thing, because I wouldn’t want him to die of embarrassment.

I love that my family is funny… looking.

July 26, 2013 (Florida)

Given the recent downturn in Dad’s health, that epic one last family trip to Disney we had planned for August doesn’t seem like it’s going to be happening after all. Dad really wants to make it to August so he can go. My brother suggests that “maybe it could be a Weekend at Bernie’s-style trip?” and we all laugh so loudly that we startle the nurses in the hallway.

Dad: "Whatever time we have left, we need to make the best of it."

Dad started picking at something on his leg, Mom says "I don't think you should pick at that". Dad says "What's it going to do, kill me?" with a smile. Always with a smile, that man.

While trying to get Dad to drink something, Mom said "finish it… and I will go get you a new one." Dad replies: "That's what I was afraid of."

Dad: "We live with the people we live with, and we don't know how long it will be. Love every one of them, that should be our attitude… we go on, and at some point in time we die. That may be a short period of time or a long period of time.  We hope it’s a longer period of time… the doctors really don't know. All they're doing is guessing."

Dad is telling stories. One of them is about this annoying kid named Billy Rubin. "Billy Rubin's in my liver and he's trying to kill me."

Now we’re all joking around about “sympathetic sudden explosive diarrhea” because that’s a real thing that happens.

Mom quips: "Just think of the money we've saved, since he didn't need to get that hip replacement that was planned for this year."

So many amazing pictures. So many amazing memories.

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July 31, 2013 (Seattle)

I just got an email from Mom describing a conversation they just had:

Dad: “I can’t do this.”
Mom: “What?”
Dad: “This end of life thing.”
Mom: “What do you mean?”
Dad: “I don’t think I’m going to last”.
Mom: “How long do you think?”
Dad: “Maybe a week.”
Mom: “You can slip away whenever it’s right for you. What about Disney?”
Dad: “I’d like to try.”
Mom: “Whatever is best for you.”

I asked Mom to give him a kiss that was only from me… then I changed my mind and said actually give him six kisses, one for each of us 5 kids and one for her.

I don't think my eyes will ever be dry again.

August 2, 2013 (Seattle)

Every day I get home from work, go to the glider in my bedroom (the same chair where I rocked my babies to sleep years ago) and call my parents. Then I start crying because I know pretty soon I won’t be calling my parents, I’ll be calling my Mom.

Mom and I talk on the phone for a while she updates me on the latest, then she puts the phone on speaker and I hear Dad call out “Hello!”. I tell him "It's great to hear the sound of your voice". He replies: "*I* think it's great to hear the sound of my voice too!"

Mom told me that when anyone asks Dad how he’s doing, he says “better doing than not doing.” True dat.

August 9, 2013 (Florida)

We are in Orlando, in a hotel room. Dad sits in a recliner facing the window, and doesn’t move much. When I was here in July, I felt like Dad was 90% himself – laying in a hospital bed, but still telling jokes and being Dad. But now… it seems like he’s only about 60% himself, and another 5-10% disappears every day.

I have been sitting here holding his hand for the last couple of hours. He keeps reaching for me and tearing up. His skin and eyes are so very, very yellow from the jaundice (damn that Billy Rubin). We take pictures like they’re going out of style.

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I’m the first of my siblings to make it to this coast - the rest arrive in the next couple of days, and then we hope Dad will make it to the cruise on the 16th... ideally not Weekend-at-Bernie’s-style. I asked Dad if he thought he could make it that far and he said no. Fuck. I guess Weekend-at-Bernie’s it is.

August 10, 2013 (Florida)

My 8 year old says goodnight to Dad and hugged him tonight. Dad lit up for a minute – a rare occurrence now – and he stage whispered to her “you know… you’re my favorite. I don’t care who knows. You’re my favorite.”

Dad promised he would wait as long as he could to let go. He said it is really hard and it hurts a lot. I hope he can keep holding on at least until everyone gets here.

In the evening, I talked to the kids to set their expectations that he could go any time. It’s kind of a confusing thing to explain to kids, which lead to this conversation:

              Me: “Granddad might pass away tomorrow.”
              10 year old: “You get to choose? Or oh… do we put him out of his misery?”
              Me: “Think of it like Granddad is hanging onto a branch and he might need to let go.”
              10 year old: “Oh… so it’s like he’s standing in front of a tunnel, and he wants to go into the light.”
              Me: “Yes. Yes, exactly.”

Mom has been telling this story about Dad from a week ago where he was sitting on the porch and kept saying out loud “Why am I over here?” and getting frustrated. Is this some kind of symbolic thing, for how he knows he won’t be here much longer?

I sit next to Dad’s recliner and play songs from some of our favorite musicals on my phone. I read him this poem which he likes:

Do not stand at my grave and weep,
I am not there, I do not sleep.
I am in a thousand winds that blow,
I am the softly falling snow.
I am the gentle showers of rain,
I am the fields of ripening grain.
I am in the morning hush,
I am in the graceful rush
Of beautiful birds in circling flight,
I am the starshine of the night.
I am in the flowers that bloom,
I am in a quiet room.
I am in the birds that sing,
I am in each lovely thing.
Do not stand at my grave and cry,
I am not there. I do not die.

August 11, 2013 (Florida)

We’re all sitting around Dad’s recliner quietly, and he suddenly says: "I don't wanna be surrounded, I want to be free."

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At one point we heard some music outside:

              My sister Jen: “Do you hear the music?”
              Dad: “Yes. Heavenly music. Put me outside so I can sing my song.”
              Jen: “What song?”
              Dad: “I don’t care, I just want to sing it.”

So we try to sing a few bars of various hymns that Dad might like. After a few minutes of this, Dad says to Mom: “Hon… we’ve failed. They don’t know a damned prayer.” We all pause crying for a minute so we can laugh.

My husband takes this incredible photo of Mom, Dad and all five of us kids and of course at one point, somebody cracks a joke and we all laugh:

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August 12, 2013 (Florida)

He's at about 25% now, very few moments of lucidity. I write down almost everything he says now.

Dad, to Mom: "I want to go to the port... I want you to crawl in here with me." Does he mean the cruise or “the great beyond”? They would have celebrated their 48th wedding anniversary later this year.

Dad: “See this, look over the far distance, see the prayer in the distance, do you believe it? Just follow it. You don't need to pay attention to all that mucky mucky muck."

August 14, 2013 (Florida)

I’m showing Dad an album of old family photos I got scanned a few months ago. One of the pictures shows a flower coming out of Mom’s head, and Dad quips: “That's a lot better than other things that come out of me".

August 16, 2013 (Cruise)

He made it to the cruise – we weren’t expecting that, but we’d already done the research and knew that cruise ships have a process for what to do when someone dies onboard. We’ve arranged for the motorized recliner and commode to be brought on board, and Dad spends most of the day laying in the recliner staring off into space. He’s not able to have a conversation or move on his own any more. Sometimes he will suddenly say a few words out loud… but it’s about something only he can see. His connection to the real world is almost gone, he’s at about 15% of himself.

Most of the family goes to dinner in the formal dining room tonight to kick off the cruise, but I stay back to watch Dad with my sister Karen and her husband John, as I want to be there if he goes tonight. At one point in the evening, Dad needs help with his bodily functions, and I drew the short straw. There’s a first time for everything, though, and I learned that wiping an adult’s ass is really not that different than wiping my kids’ when they were babies.

Lifting Dad from the commode to put him back on the recliner takes all three of us, with John pulling most of the weight as he wraps his arms around Dad’s body to hold his body weight, looking almost like they were hugging. I move the commode away while John gently rests Dad back in the recliner, and Karen presses the button to lift the leg rest of the recliner before John has moved out of the way. As the leg rest slowly raises, John jokes “You’re going to hit my nuts!” and Dad says the last coherent thing any of us hear from him, which is: “I would suggest you not put your nuts there.” before drifting off again.

Bravo, Dad, getting off one last joke before you go… so fitting. The rest of us laugh so hard we cry, then we cry so hard we start laughing again.

August 17, 2013 (Cruise)  

He’s down to 10% today. Dad’s always cold, so Mom makes sure he’s always got his beloved Cubs cap on and is covered with a warm blanket. We take so many pictures, tears and all.

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Dad babbles occasionally during the day… I write them down, I just want to remember the words:

“Take my shoes… take my shoes. Take them off.” – but of course, he wasn’t wearing shoes, and hasn’t in weeks.
“I want to sit in the hallway. Come on let’s go sit out there. I gotta sit. Please go out with me.”
“I want to see the penthouse.”
“Pull me up… pull me up… I want to look out.”
“Let’s go!”, he says. “We can’t go with you this time, Dad… we’re just here to see you off” says my sister Jenny. Dad says OK.
“Just go! Just go!”
“Lift me up.”
“Just put me in the ground.”
To my brother in law: “push me”. Then later, to Mom: “I’ll pull you along.”
“Poppy, poppy, poppy… wait for me.”
“Why don’t I have water? What’s this water shit in front of me?” His hasn’t had the energy to drink anything all day, his lips are so dry.

We ask the cruise staff if there’s any way we can get a family photo with Mickey, because Dad loves Disney so much. At first they say no… but if there’s one thing my family’s great at, it’s guilt trips. We get the photo. It’s kind of grotesque, as he’s so far gone at this point… but I love this photo so much because it captures both the joy and the pain:

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Today is Mom’s 72nd birthday… helluva way to celebrate.

August 18, 2013 (Florida --> Seattle)

None of us can believe it, but he made it through the entire cruise. Barely, though – he’s at 5%, so it’s probably a matter of hours now. We fly back to Seattle.

Sister Kristy stays with Mom to help with the end. She reports that once while asleep, Dad managed to take off his underwear and shirt - I told her I figure he was preparing to go out the way he came in.

August 19, 2013 (Seattle)

Life is weird. I drop the kids off at camp and go to work, as if it were just a normal day. I text my sister to check in, and take a screenshot of the conversation of our new shorthand:

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August 20, 2013 (Seattle)

Dad’s at 1% now – one helluva low battery alert. Mom writes a blog post to update extended family and friends:

"He is no longer getting up, no longer eating, taking in a few ice chips, no longer talking and seemingly unaware of who is with him. We talk, we play music, it is not clear that he hears. The trip was amazing, we gathered in memories like fireflies, and the photographers among us documented many, many joyful moments. We are grateful for so many things."

August 21, 2013 (Seattle)

I’m woken up by the phone call from Mom. He’s gone. She waited a few hours to call me because of the time zone difference. I wish I’d delayed my flight home and just stayed in Florida… oh well. I learn some new things like what you’re supposed to do if someone dies in your home. Good to know.

August 28, 2013 (Seattle)

I had a lucid dream about Dad last night. I knew I was dreaming, and I knew he was dead, but I was still so so excited that I got to touch him again. It was a very simple dream - he was just sitting at the kitchen table, and I got to walk up behind him and put my hand on his shoulder. I hope I have another dream like this again.

While looking through photos from earlier this year, I realize that I took a picture of me doing the exact motion from the dream back in February, during my trip out when he first was diagnosed. I guess that’s how my brain put together the lucid dream:

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My ten year old noticed that I was sad, and asked me why.

              Me: “Guess”
              10 year old: “Granddad?”
              Me: “Yes”
              10 year old: Why don't you just get over it? That's what Daddy always says to me.”

August 31, 2013

Today would have been Dad’s 73rd birthday. Neither the word “happy” nor the word “birthday” really fits, but I still say it to myself anyway: Happy birthday, Dad.

January 10, 2014

I suggested to the kids that they write a letter to Granddad. My youngest draws a picture too, asking for a yellow highlighter so she could finish coloring the “After” picture:

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August 21, 2020

I still think about Dad just about every day, but this year it’s different from previous years, because now there’s a part of me that’s actually glad he isn’t here anymore, so that he wouldn’t have to experience <hands waving around vaguely at the whole world>. It’s a weird feeling to sit with.

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