Life's Not A Paragraph, And Death I Think Is No Parenthesis

You know when you've put something off because it's unpleasant, and then it becomes harder and harder to bring yourself to do it, and then it snowballs into such an overwhelming task that you throw your hands up like "to heck with this!" and proceed to re-watch The Great British Baking Show every night instead of writing?

It's been four weeks since Paul died. And while I'm not ready to write about his death just yet, I can say that it was mostly peaceful, and we were with him the moment he drew his last breath.

Saturday would have been our sixth wedding anniversary. Six good years, but not enough of them.

People keep asking how I'm doing and my response is usually something along the lines of "I'm okay. That is—at this exact moment in time, I'm okay. Ask me again in five minutes and I'll possibly be bawling into a bag of Doritos."

I guess that's grief? This is all new terrain. I've never grieved over anyone's death before. I've been sad about death, yes. I've cried at funerals, sure. But this palpable sorrow that washes over me without warning? Uncharted waters, folks. 

The sadness feels like repeatedly getting the wind knocked out of you. Normally it strikes at night, after Ingrid is asleep and the world and my mind are finally hushed. But there are also times when it hits unexpectedly, fast and hard.

Last week, for instance, I had an appointment with my oncologist. She's in a new clinic because, um, the oncology clinic I've been going to for the past year and a half went bankrupt. (You can't make this stuff up, people.) Anyway, I was a new patient at this facility, so I had to fill out new patient paperwork.

I sat down with my clipboard and there it was. A blank box next to the label I still haven't quite come to terms with: WIDOW. Right alongside "single" and "married" it stood, aloof and biting. My eyes misted over as I left blank the lines I would normally fill in with Paul's contact info. 

I was startled by how much this bothered me. And a little bit embarrassed. Such a small thing, in the grand scheme of things. But here we are. 

Ingrid, by the way, is doing wonderfully. At three, death is still too abstract a concept for her to grasp, and maybe that makes things easier. She'll drop it into conversation intermittently and casually, like she's discussing the plot of Frozen or her favorite cake flavor. 

The other day, while waiting at the DMV, Ingrid struck up a conversation with the couple next to us. Thrilled to have an audience, she chirped happily about her cousins and her cat and her toys, and then she hit them with this doozy of a remark:

"My Dad is dead. He was sick. We buried him. My favorite color is pink, but my mom likes green."

So you see, she knows he's dead, but she doesn't understand what that really means.

I desperately want Ingrid to have some memories of Paul, but I don't know if she will. As a member of Paul's Hospice team pointed out, most of us don't have many clear memories of our lives at three years old. What we can remember, though, is the unmistakable feeling of being loved.

That, my friends, she has in abundance. 

Light Strikes A Deal With Each Coming Night

I'm pretty careful about what I listen to these days because I'm a great jumble of unchecked emotions and just about anything can (and will) set off waterworks. And when I say "anything" I mean that in the most literal sense. Like yesterday I cried watching a dad tow his kids behind his bike down the street. And then I laughed because that is 100% insane.

Anyway, Spotify thinks it's a fun time to throw in the occasional tune that will oh—just completely destroy me. This is my attempt at paying it forward. Enjoy the cathartic cry.

Each Coming Night by Iron & Wine

 Will you say when I'm gone away:

"My lover came to me and we'd lay
In rooms unfamiliar but until now"

Will you say to them when I'm gone away:
"I loved your son for his sturdy arms
We both learned to cradle then live without"

Will you say when I'm gone away:
"Your father's body was judgement day
We both dove and rose to the riverside"

Will you say to me when I'm gone:
"Your face has faded but lingers on
Because light strikes a deal with each coming night"

I'll Follow You Into The Dark

"Most things will be okay eventually, but not everything will be. Sometimes you'll put up a good fight and lose. Sometimes you'll hold on really hard and realize there is no choice but to let go.  

Acceptance is a small, quiet room." 

- Cheryl Strayed, Author of Wild

At this point, many of you have already heard the latest on Paul through Facebook. For everyone else, here's the scoop:

In my last post, I mentioned we were spending Easter with Paul's family in Wisconsin. But as our two-week visit approached its end, it became more and more evident that Paul wouldn't be making our return flight to Buffalo.

So the three of us are staying at Paul’s childhood home in Oshkosh, Wisconsin where he has entered Hospice care.

We have long considered making Oshkosh Paul's final resting place on this Earth. After observing his almost immediate "release" when the decision was final, I can say with a fair degree of certainty that we chose correctly.

At various points in the last month, every one of Paul’s seven siblings traveled home to spend some precious time with their brother and each other. In true Coleman form, we enjoyed boisterous meals rounded out with a minimum of three to four protein choices. Ingrid bonded with her cousins. My sisters-in-law made sure there was never a shortage of Paul’s favorite cookies (oatmeal raisin, for some reason).

There were things back in Buffalo, though, that needed attention. So I boarded my return flight solo, the empty seats on either side of me stinging reminders of the rotten week ahead. 

Originally, the plan was to hit up Orlando after our Wisconsin trip. But instead of scoring autographs from Elsa and Anna, I would be spending the week selecting tasteful memorial cards and scouting out prime burial plots. 

Which—have you ever done that? Shopped for burial plots, I mean. It’s weird, right?! I’d compare it to house-hunting with your real estate agent, only slightly less cheery. 

“Well, The Good Shepherd Hill has the most scenic treeline, which will be lovely in the summer months. But then you can purchase a package deal if you go with the plots around Ascension Bell. Depends what you’re looking for.”

So. WEIRD.

I fully expected to be wiped out after my cemetery tour. I had anticipated feeling a little drained after drumming up an obituary draft with our funeral director.

What I was less prepared to hit me so hard was the realization that the three of us would never be together in our little home again. Relics from Paul’s last few months in our house were like little knives to my heart every time I discovered them. Things like pill bottles tucked behind picture frames and vials of holy water resting on his bedside table.

It was gutting to see the recliner he’ll never sit in again, the bed he’ll never sleep in again, the flannels he’ll never wear again. Maybe that's dramatic, but as someone who weeps while putting baby clothes in storage, well, you can see how troubling this is for me.

But I survived. I accomplished what I needed to accomplish. Now I'm back in Wisconsin, and we are exactly where we’re supposed to be.

Paul’s days oscillate from “semi-tolerable” to “well, this is the pits.” Some days he can stomach a 20-minute jaunt around the neighborhood in his wheelchair. Some days he can’t get out of bed.

Tearful moments are often followed by welcome stretches of peace. I can only attribute these tranquil periods to the many prayers and well wishes being said on our behalf. That or my meds are triggering some choppy mood swings. Hard to say. Let's go with the former.

Thank you for being with our family in our sorrow. Your continued prayers and kindnesses mean more than I can express adequately here. 

One of Us Will Die Inside These Arms

The other day, my radiation nurse asked how Paul was doing with treatment.

“Oh, he’s ok. I mean. Well. Actually. No.” I paused, unsure how to finish that sentence. I mean—how do you casually tell people your husband is dying? (I probably did it very wrong.)

I stumbled through the key points: 

• Paul stopped the chemo pill he was on. 
• He probably won't pursue any more treatment. 
• He’s focusing on enjoying what time he has left. 
  
  

See? It’s like dropping a bomb on people. 

It’s also been a major reason for the gaps between my evasive blog posts lately. It hurts too much to think those thoughts. It hurts worse to give them shape.

We had a great Christmas. Absolutely, we did. It was very special.

But.

Everything has taken on this weird blend of light and dark, happy and sad, gratitude and grief.

About a month ago, Paul went into the clinic for routine bloodwork. It was the usual state of affairs: low hemoglobin, requiring a cocktail of A- blood. Blood transfusions are an all-day event, so we passed the time by discussing fun topics such as: which photograph we should use in his obituary, and a Buy-One-Get-One headstone promo Paul considered “a deal we should jump on!”

When his oncologist stopped by, Paul broached the subject of stopping treatment. We wanted to get her honest input on the subject. Realistically, Paul asked, aren’t I coming to the end of the line in terms of treatment available to me?

Her tone was gentle, yet matter-of-fact: “Yes, we’re getting close to that point. Our options are winding down.”

In all of his years as a patient, a concrete timeline has never been assigned to Paul’s survival. Until very recently, the majority of our medical consultations have danced around the fact that his cancer would result in, uh, death. The language is usually more geared towards survival: treatments, clinical trials, getting better, the future.

Things are shifting, though. It’s impossible not to notice.

When I met him, Paul was a strapping, wood-chopping, winter-camping kind of dude with thick sideburns and an unhurried, mellow temperament. I found him extraordinarily charming in his Grateful Dead t-shirts and ‘93 stick-shift Volvo. He was easy to befriend. He was easy to fall in love with. 

Summer in Wisconsin, 2007

The sideburns and the Volvo have long since bit the dust, and we don’t do much camping these days. Certainly not in the hollowed-out cavern of a snow mound. (Paul maintains this is an enjoyable activity. We agree to disagree on the matter.)

He’s still charming, and he still has a laugh that makes my insides gooey. But he now checks in at 136 pounds and he sometimes needs help getting into a standing position.

Before the holidays, Paul’s palliative care doctor asked, ever so gently, if we had worked out his end-of-life wishes. She gave us pamphlets with photographs of silvery-haired couples and instructions on how to initiate this conversation. Not a cheery read. But I was grateful for her candid approach. 

Last month, we got in touch with an end-of-life wish-granting organization. I gave the forms to Paul’s oncologist, who happily completed them. Afterward, I scanned what she had written in the space following “Patient’s Life Expectancy”—6-12 months.

6-12 months.

Could be more, could be less. But I don’t think those numbers are far off the mark.

I’ve been hesitant with posting, too, because I don’t want to be this woe-is-me harbinger of gloom. So I’m sad, so what. Everyone is sad.

And people have been so good to us. So generous, so kind and helpful. Who needs to hear how I can’t drive anywhere without some stupid Ed Sheeran song on the stupid radio making me bawl my stupid eyes out? (It’s terrific trying to compose myself at red lights. Nothing to see here, folks. Just a slightly hysterical woman who maybe shouldn’t be driving.)

A few weeks ago, Ingrid approached me with a serious look on her face.

“Mom? Is my Dad ok?”

Me: “What makes you ask that?”

Ingrid: “My Dad is so...so…so…(she stammered in search of the appropriate adjective)...so SAD.”

He is sad, naturally. But he’s still Paul and he still jokes in his singularly “Paul” way. His 33rd birthday fell on Thanksgiving this year. While planning our menu and arguing the superior features of our preferred holiday desserts, Paul played the dying card—he played it hard.

“But Liz, you do know this is going to be my LAST Thanksgiving, right? My LAST birthday.”

Me: “...”

Paul: “Cherry pie it is then.”

I’m sorry for this party pooper of a post. But then, I write about cancer. Not much happy stuff to report on the topic, I’m afraid.

Please know we are so grateful for all of the encouragement and meals and Wegmans gift cards and prayers we’re still receiving. I wish I could give every single one of you a giant bear hug to say “Thank you, we love you, you’re making this so much easier for us.” Except it would be less of a giant bear hug and more of a delicate fist bump because I’m not a hugger and, well, you understand.

xoxo

No Dress Rehearsal—This Is Our Life

Some awesome things that have been happening:

• I can wear mascara, finally (I have a full set of eyelashes!) It’s always been my favorite, and I went 6 months without, so no—I will not downplay my excitement.
• In case you didn’t hear, my second mastectomy was a success. Probably should’ve opened with this one, but gawrsh I love mascara.
• I am far enough along in my healing to wear a specially-fitted breast prosthetic. Which I realize is one of those things you maybe want to leave out on a blog that’s read by your parents and maybe your high school teachers. Anyway, it’s great fun because when I go out, I no longer have to choose between the unbecoming solo-boob look or futilely stuffing a wadded washcloth into my bra. It’s a massive relief to wear clothes that fit instead of the billowing, muumuu-like tunics I’ve been favoring. 

• It’s not a huge deal, but I am stupidly proud of an article I wrote that was published on the website, Introvert, Dear. Possibly, I talk about introversion too much. It’s a quick read about coping with cancer as someone who requires (excessive?) amounts of alone time: “I’m the type of person who will go to great lengths to remain invisible in public. But there’s something about being eyebrow-less that turns heads. There’s something about a bald 30-something mom inspecting bananas at the grocery store that drives fellow shoppers to strike up a conversation. People want to express empathy, and that’s terrific. It’s also my worst nightmare.”
• A hugely awesome thing that I’ve been meaning to bring up for a while—these last several months, our "Coleman Army" has courageously picked us up, dusted off our pants, and engulfed us with love and pot pies. When people say “I don’t know how you’re doing it” all I can think is, “I’m not the one doing it! I’m being carried through this storm by a badass Army of the best folks on Earth. They’re doing all the doing.”

So thank you. I'll admit, those words do feel slightly pitiful because they just seem...insufficient. Against the multitude of ways people have helped us this year, my “thank yous” don’t really cut it. But it's what I got.

When life can be a real pisser, I’ve found that people can be quite the opposite.

People (dear friends, barely acquaintances, lovely classmates I haven’t spoken to in a decade, complete strangers) have jumped in and made this whole mess a lot less messy.

People have made us meals. So many delicious, nourishing, creative meals. Thank you!

People have sent us gift cards and packages with all sorts of goodies. Danke.

People have taken Ingrid to the Zoo or the park or wherever, just so Paul and I could rest. Much obliged.

This past spring, a young family helped clean up our overgrown yard. A million times, thank you.

One kindhearted and terrific individual set up a fundraiser to help us out. To everyone who has so generously contributed: you are rockstars and we thank you!

I am profoundly touched by all this kindness. Profoundly. I know Paul is, too. Also, I’m so grateful for the encouraging feedback I’ve received about these silly ramblings. I'm hyper-critical of everything I write, so hearing a friendly “good job, sport!” makes my heart glow.

It’s corny, definitely, but it must be said: writing about this cancer drama-rama has been beautifully healing for me. When Paul was sick the first two times around (in 2012 and 2014), I was my usual quiet self about things. I didn’t post updates on social media. Because who wants to hear about my little dark night of the soul when the world is already filled with an inconceivable amount of heartache?

So I kept these gross feelings mostly to myself. In the midst of full-blown depression, I stopped writing entirely. I let myself get swept up in the current of life’s foulest emotions—anger, grief, envy, complete and utter despair. 

In the thick of things, I couldn’t see the point of sharing our experience. I wasn’t exactly doing a bang-up job of living our experience; what merit could there be in dragging other people down in the mud with me?

Once I made the decision to write (and to share what I was writing) I saw the benefit almost instantly. I can’t tell you how uplifting it has been to witness all of these people rallying around us, all of the thoughtful emails, the Facebook messages from total strangers, the prayers, the Moana-themed toys for Ingrid.

It has been one strange and hard and occasionally gut-wrenching year for our family. But I am happy I decided to share some of our story. The internet can do wondrous things (awful, terrible things, too. But for our purposes—wondrous things!)

Some less than awesome things:

Paul has been very up and down with his symptoms. More down than up, these days.

• He has terrible stomach pains that leave him doubled over in bed. 
• He's anemic. 
• He throws up constantly.
• He's losing weight. 
• He has balance issues, so he now uses a cane when we go out. We are officially 90 years old. Obviously, it's a snazzy green plaid cane. Because Paul is one dapper 90-year-old. 

All of this is troubling. Quite. But you wouldn't know it by talking to Paul. He makes cancer look easy. He's still as handsome as ever, and his skin tone is surprisingly healthy, plummeting hemoglobin and all.

Some items I can’t categorize into awesome/un-awesome things:

Yesterday, Paul flew back to DC for a consultation at the NIH. They have a drug that's shown success fighting meso, and they want Paul to give it a shot. This could qualify as an awesome thing, but it’s too early for me to get excited about it. There’s a lot to consider before moving forward. Paul’s faulty kidneys, for one. 

It’s a painful topic, but one that comes up more and more: how do you decide when to stop chasing risky treatments and just focus on symptom management? At what point do you call it quits and opt for a more comfortable (and maybe shorter) life?

I don’t know. Our default mode is to claw at every last scrap of life. But what happens when all this grasping for existence leaves you with a life of suffering and complications? 

I want to live. I know Paul wants to live. Like I said—it’s a painful topic. But it’s the one shading our current world. It’s coloring the way we live, the way we envision our future, the way we smother Ingrid with desperate kisses.

If you're from the Western New York area, then you probably already know, but Gord Downie (lead singer from The Tragically Hip) died from a f***ing brain tumor last week. Death is sad whenever and however it happens, but right now cancer-related deaths strike a nerve. 

I'm signing off, then, with some words from The Hip that seem fitting. Gord, you said it better than anyone else could, you shining poet: