Grief, Kayaking, And A Happy Farewell To Summer

If we're going with the "grief hits in waves" analogy, then this past week was a tsunami. It's been a relentless onslaught of heaviness around here, hit after hit after hit. It's all part of the process, they say, so I'm trying to roll with it and let the emotions fill me up, do their thing, and go from there. 

One thing I've learned while navigating this boggy terrain, is that grief is not a straight path. It's not linear, it's not chronological. Things do NOT get easier as each day passes. They get harder. Then a little easier. Then back to hard. Then the world explodes and I'm heating up Campbell's soup for dinner and sobbing into Paul's hoodies.

Last weekend, Ingrid and I took a road trip out east to Waterford, NY for the 8th Annual Kayaking For Meso fundraiser. This event is particularly dear to my heart. Paul and I made the trip three years ago, when Ingrid had just turned one. We painted our canoe in the Meso Foundation's signature light blue color, and I held our not-yet-walking babe in my lap while Paul paddled us the seven or so miles down the Erie Canal. (Hard to imagine him with that kind of strength.)

Kayaking For Meso 2015

This year's kayakers paddled in memory of my sweet Paul and Sarah Simso-DeMaria, another young woman who passed away from mesothelioma last year. Sarah was just lovely, and we had the privilege of meeting her and her husband at a Meso Symposium in 2015.

Despite the cold temps this year, it was an incredible event. I can't think of a more fitting tribute to Paul's memory. Aside from his family, being on the water was one of his great loves.

Kayaking For Meso 2018

We were spoiled with a comfy ride on the pontoon boat this time around.

Ingrid and I ended the weekend on what should have been a high note: an afternoon at The Strong National Museum of Play in Rochester. That place, for the record, is something else. Really special. The mini Wegmans area was a favorite.

And yet, I left feeling more deflated than ever. I couldn't even keep it together long enough to get past the highway tollbooths without tears. Why yes, I'm crying. But I'm FINEEEE. Totally 100% OK with life and everything. Just the ticket if you would, kind sir.

I'm guessing my sadness was triggered by an unfortunate blend of dreary weather, the onset of a nasty cold (thank you preschool germs!), and a restless sleep the night before. And maybe OK. Also because I'm totally not fineeeee or OK with life and everything. Not at all. And being in a museum swirling with dads helping their daughters build castles and pregnant moms and siblings and all that noise and then there's just me, alone, watching my daughter play, alone, and that's what I felt: so alone.

And before you're all: but Liz, you're not alone! You have friends and family and neighbors and all these people loving you and Ingrid and helping you out. And, guys, that's awesome. I appreciate every single one of you and every single thing people have done for us—big and small. Really, I do. I am so beyond blessed it's borderline ridiculous. 

But. I miss my husband. There is nothing, NOTHING, that can ever fill that hole.

I love watching Ingrid explore and discover and do all that great kid stuff. I love taking her on trips and reading to her and listening to her butcher the lyrics to The Greatest Showman. But I miss sharing that stuff with her dad. Yes, I can share those things with other people. And that is fine and dandy, but it is NOT the same.

I missed the amused smiles we'd have shared when an incredulous Ingrid asked if an animatronic Giant was "real or fake." I missed ordering Paul a strawberry milkshake to go with our pair of chocolate ones. I missed his stream of ornery remarks about all the kids running wild. (Although more known for his laid-back vibe, I can assure you Paul's attitude often crossed into what I affectionately referred to as "Early-Onset-Grumpy-Old-Man-Syndrome".)

Most of all, I missed my husband when a couple of snooty girls refused to play with my daughter. There's no need to go into details, but basically, my bruised heart got all torn up watching two 5-year-olds tell my kid to "go away! We don't want to play with you!" Ingrid, cool kid that she is, walked away entirely unfazed by this snub. Her sensitive mama...not so much. Paul would have known exactly the right thing to say, though. He would have known just how to snap me out of my funk.

That's the thing about having a committed partner. They know you better than any other living soul, and it's sort of their job to take care of things when your sensitive self can't stop crying over mean little girls. And that's gone forever and I'm not OK with it, OK?

All in all, I'm glad for this summer to be over. As soon as September hits, every living soul is all: "can you believe how fast summer flew by?!?" And I'm over here like: Really, how was that for you? Because OHMYGAWD this summer went so slooooooooooow.

Not that it was all terrible or depressing. In fact, I don't think I've ever crammed so much activity into one season. This summer was not without its memorable moments. But fly by, it did not.

You hear that, Buffalo winter? Bring it. I'm ready for you. (Did I just say that? Must be the grief talking. I'm powerless here.)

xoxo

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"

A Cancerversary Post, Because.

“Without the dark there isn’t light. Without the pain there is no relief. And I remind myself that I’m lucky to be able to feel such great sorrow, and also such great happiness. I can grab on to each moment of joy and live in those moments because I have seen the bright contrast from dark to light and back again. I am privileged to be able to recognize that the sound of laughter is a blessing and a song, and to realize that the bright hours spent with my family and friends are extraordinary treasures to be saved, because those same moments are a medicine, a balm. Those moments are a promise that life is worth fighting for, and that promise is what pulls me through when depression distorts reality and tries to convince me otherwise.”  

- Jenny Lawson: author, blogger, mental illness advocate, lovable oddball

***

A year ago today I got probably the least fun phone call ever from my Ob/Gyn.

I knew what was coming, and I thought I was prepared to hear it. But like who’s ok with hearing they have cancer? 

As a rule, I don’t get too caught up in dates or anniversaries (“cancerversary,” some would call it). But when I think about how much my life has changed in the last 365 days, I’m still stunned. I still can’t believe I have (had? Is past tense allowed yet?) CANCER. It doesn’t compute. It can't be real. Until I look down at my chest and I’m like “Oh, right. THAT happened.”

Getting diagnosed with cancer was lousy.

The two weeks following my diagnosis were lousy X A BILLION.

Because everything in my world was a big fat question mark. “What stage am I?” “Did it spread?” “Am I going to go bankrupt?” “What if my skull has a weird shape?”

I remember asking my brand-new surgical oncologist if he could give me something to calm my nerves. “My brain won’t turn off. I sleep for 1 hour at night. GIVE ME DRUGS PLEASE I NEED THEM OR MY BRAIN AND HEART WILL EXPLODE FROM ALL OF THESE WORST-CASE SCENARIOS PLAYING OUT IN MY HEAD.”

The last year has looked something like this: 

• 16 rounds of chemo. 
• 1 ER visit, following a freak reaction to my meds (in hindsight, an almost funny story) 
• 2 mastectomy operations (because one is never enough) 
• 2 implants in. 1 implant out. 
• Physical therapy 
• 36 rounds of radiation 
• Daily tamoxifen pills 
• Monthly Zoladex injections. IN MY BELLY.
• Scars, burns, weight loss, hair loss, fatigue, nausea, anxiety, consolatory hot fudge sundaes. (lots of those)

And that was just me. Add Paul’s stuff to the list and you’ve got a full-blown dissertation on your hands.

People tell me things like I’m a tough little cookie all the time. A lot of cancer patients have issues with compliments like this, and I totally get it. Because anyone in their situation would do the same thing, and are we really that brave for just doing what it takes to stay alive?

Buuuut also: 2017 was a total stinker. And maybe I don’t give myself enough credit for kind of keeping it together and sort of carrying on in less-than-favorable circumstances. Maybe I AM strong, and whatever—I like when people tell me I am. SO SUE ME.

And anyway, if we’re handing out Tough Cookie Awards, Paul is so clearly top contender.

I know in my last post I said he wasn’t optimistic about future treatments. But now he’s considering giving chemo another shot. This time, at a lower and less frequent dose.

In the meantime, we’re enjoying the heck out of life and each other.

Like last week we took Ingrid to Disney on Ice. We voluntarily spent two hours dodging rogue glow sticks and listening to toddlers howl. Because that’s what families do. 

It was the best.

Love and Happiness,Liz

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

It's Brave (and more than ok) To Accept a New Normal

My original goal here was to write at least one blog post per week. But I was busy watching season 2 of Stranger Things last week. And by week, I mean 3 days. Because how could you possibly take longer than 72 hours to watch it? If you have no clue what I’m talking about—I’m sorry, but if you haven’t watched Stranger Things, are you even living?

So. Why are you still here? Go. Watch. And then come back so we can fangirl together until our heads and hearts explode over how awesomely awesome that show is. 

The past is in the past. Let it go.

With Halloween in our rearview, we are clipping along at a furious pace towards the holiday season—and I find myself glancing back at the contrasting landscape we found ourselves in a year ago. Because I am a well-adjusted individual who participates in healthy activities that foster self-love and contentment. 

Things weren’t perfect last year. But they were blissfully far away from the shit show that is 2017. 

Sometimes I like to hang out in that cobwebby corner of my mind, waiting for those memories to show up. Even if they come with switchblades in their pockets—my thoughts can be devilishly masochistic. 

A year ago, I was trying to get pregnant.
This year, we face the almost certain chance our daughter will be an only child.

A year ago, Paul was working a physically demanding full-time job.
This year, he’s working his haute couture cane down the driveway.

A year ago, my biggest health concern was shrinking a few haphazard zits along my jawline.
This year, shrinking a massive tumor in my breast took precedence. 

Last summer, Paul had the stamina to rig up our toddler’s trailer and tug her behind his bike for hours.
This summer, our bikes didn’t leave the garage. 

Last year, our weekly schedule revolved around Paul’s varying work hours.
This year, our weekly schedule involves a juggling act of 4 or more doctors' appointments.

How many times during crisis mode do we say “I can’t wait for things to go back to normal?”

I used to say that all the time.

I can’t wait for Paul to finish chemo so he can stop being tired all the time. 

I can’t wait until I finish treatment so I can just get on with my life. 

I can’t wait until Ingrid is potty-trained so I can stop buying expensive diapers. 

We just want things to be normal. When life gets turned inside-out, we protest and pine for the way things used to be. But what if there is no more normal? What if things are never going to go back to the way they used to be?

When my husband was first diagnosed with terminal cancer, I was really bad at this. I clung to our old version of normal, desperate to retrieve it. I convinced myself that things could eventually be reversed. Paul would be cured and go back to work and we’d have a bunch of kids and spend our summers rambling the West in a vintage caravan. 

That was how we'd find happiness. By getting back to our own definition of normal. By getting back to our pre-cancer lives. 

Here’s a fun, little reality check for you: our old normal has been obliterated. As in, it no longer exists. We will NEVER EVER EVER go back to the way things were.

That can be a tough pill to swallow.

Changing our perspective on acceptance

I recently read Paul Kalanithi’s memoir When Breath Becomes Air. Paul was a brilliant neurosurgeon who was diagnosed with terminal, metastatic lung cancer at the age of 36. The book, which he wrote during his final year of life, explores his quest to understand what makes life meaningful. 

Following his diagnosis and depleting treatments, Paul continues to pursue his rigorous medical training in an attempt to maintain the normalcy of his life. But things couldn’t move in the same direction his healthy self had planned:

“As furiously as I had tried to resist it, I realized that cancer had changed the calculus. For the last several months, I had striven with every ounce to restore my life to its pre-cancer trajectory, trying to deny cancer any purchase on my life…[but] even when the cancer was in retreat, it cast long shadows.” - Paul Kalanithi 

It’s not about “giving up” or “letting cancer win.” It just is. It’s facts. It’s reality. Just as Kalanithi had to learn how to live with a new set of circumstances post-diagnosis, my family continues to adjust to our new normal. One we’re not particularly fond of, but one that we’re stuck with.

This happens to everyone: we’re thrust into new normals when we have children (5 AM becomes the new 9 AM.) It happens when we go through a divorce, when we move across the country, when we switch to night shift, when our favorite Korean diner goes bankrupt (oh, cruel world.)

Personally, our family’s new normal involves more ER visits and “why-do-I-even-pay-for-insurance” moments than I’d like. It involves more conversations on end-of-life care than I had anticipated as a newlywed. It comes with a lot more poking and prodding than my husband would prefer.

With time and practice and a healthy dollop of humility, I’ve come around to accepting my new normal. I still get wistful and cranky about it, sure. But my family doesn’t benefit from my bucking against circumstances that are out of my control.

For the record, accepting the way things are is not the same as “giving up” or becoming the proverbial wet blanket. Taking my reality for what it is and not demanding it be something it can't be—this isn’t an act of weakness or apathy or laziness.

It’s kind of brave to hold steady and look reality in the face.

It’s sort of a big deal to learn how to keep living with whatever version of normal life hands you.

Has life ever handed you a "New Normal"? 

Were you about to accept your new circumstances gracefully, or was it a challenge to move forward? 

Can you offer any advice to those who might be entering a drastically different season of life?