Not Today, Cancer

What Does Grief Look Like Now?

2019-03-18T10:49:00.004-07:00

Hi, hello. How are you, dear friends?

Things are just fine here. Quiet. (A good thing.) We’ve managed to scrape through another Buffalo winter, so that's something.

Ingrid is sporting a new ‘do with self-styled bangs (yes, I finally hid all of the scissors), and I’ve discovered the simple pleasure of ordering cheap trinkets from Wish.com (coping at its finest).

As far as my health, I'm feeling mostly good, physically. Also:

Had a clear MRI in December.
I see my oncologist every other month.
Getting a monthly Zoladex injection. In. ma. belly!
Doing the Tamoxifen thang.

It’s taken some tweaking, but I think I’ve finally arrived at a healthy combination of meds, counseling, and a go-with-the-flow attitude that has led me to where I am now: mostly peaceful/groovy/happy, with periodic smackdowns with grief (who is a muscly and mean jerk, and I am neither of those things, so you can guess who usually wins).

So, 10 Months Out. What Does Grief Look Like Now?

Grief looks like going days at a time without so much as a single tear. And then one day: all the tears.

Grief looks like guilt. Guilt for accepting a boy’s number at a bar. Guilt for not being sad all the time. Guilt for cooking all the foods Paul hated and watching all the girly shows he couldn’t stomach, and being super happy about it.

Grief looks like spending Valentine’s Day eating questionable amounts of cheese while weepily watching Little Women.

Grief looks like family fun days at Bounce Magic or the Science Museum. It looks like everyday family stuff: forgetting to pay bills, complaining about winter, discovering new nail polish “art” on the wall.

Grief looks like exhaustion. Mixed with joy. Mixed with hope. Tastefully seasoned with a spoonful of "frig the world, I do what I want."

Grief looks like inventing new family holiday traditions. Inventing a whole new life, actually. One that makes sense for Ingrid and me.

Grief looks like a lot of coffee. And a fair amount of gin.

When I'm not trying to wrestle grief to the ground, I enjoy watching Ingrid write her name in squiggly handwriting or answering her profound questions on life (“Mom, when they bury you, do you get dirt up your nostrils?”)

She talks about death possibly more than most 4-year-olds. Good or bad thing? I don’t know.

I watch her grow, and my heart is exploding, and sometimes I feel so badly that Paul didn’t get to see this. He was taken too soon, and sometimes this makes my grief look like anger. Or more like...this overwhelming heartache, a sort of sickly-sour-guilty feeling that I’m here, watching the sun set over the ocean, and he isn’t.

And, no. I don’t live by the ocean. Ingrid, my sister, and I took a trip to Florida in February, and it was DA BOMB.

Love, Liz

Three Weddings And A Funeral

2018-10-30T18:32:00.002-07:00

About a week before he died, Paul made a strange request:

"Could we have a Halloween party for Ingrid?"

"...In May?"

"Yeah. Like a Christmas in July thing, only it's Halloween...in May."

"Um, I mean. I guess we could do that?"

"I just love seeing her dressed up," he said. "We could get costumes and candy and have her cousins over to watch Halloween movies."

"OK Paul. Yeah. A Halloween party it is. How are you doing on pain? Time for more Oxy yet?"

It felt like he knew he wouldn't make it until October. And maybe he just wanted one last stab at ~~stealing~~ sharing his kid's stash of Reese's cups.

But then, minutes later, he'd refer to some future event with giddy anticipation. Not at all like someone who was planning to die in a few days. Like, for instance, his baby sister's wedding that took place a couple of weeks ago. He was so excited to see her walk down the aisle.

I remember sitting at the dining room table with Paul on one of his last nights. He had a photograph of his youngest sister in his hands and he was saying, "She is so beautiful. Isn't she so pretty, Liz?"

Hearing a brother say that about his sister—is there anything sweeter? I mean, really. But that was Paul for ya. He loved his family. LOVED them.

People tend to speak favorably of the dead, but I am only being sincere when I say I was tremendously lucky to have been Paul's wife. His siblings were lucky to have had him as a brother. His friends were lucky to have been witnesses to any one of his (possibly intoxicated) impersonations of a French boarding school headmaster (long story). I won't say his parents were lucky to have had him as a son because *ahem* they had a major hand in molding Paul into the Paul that he was, so actually—he was the lucky one there.

So Paul, I just wanted to let you know—your sister was a lovely bride. All FOUR of your sisters were lovely. Your brothers weren't half-bad either. Ingrid and her cousin made the most darling flower girls. And the DJ was out. of. this. world.

A small handful of Ingrid's bajillion cousins

Guys, enjoy your trick-or-treaters. And hey! Do me a solid and save me any Junior Mints. You can have all of my Almond Joys and Mounds and whatever other candy bars decide to be gross by having coconut in them.

Also, to Paul's baby sister: I'm sorry if this makes you cry. But Paul loved you quite a lot and I dunno. Maybe it's good for you to hear that again. Don't be mad, pleaseeeeeeeee k love you bye.

Grief, Kayaking, And A Happy Farewell To Summer

2018-09-19T08:13:00.002-07:00

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

Annual Summer Blogging Challenge

2018-09-04T10:17:00.001-07:00

Fellow blogger and breast cancer advocate, Nancy Stordahl of Nancy's Point, has issued another series of questions in her annual Summer Blogging Challenge. Here are my answers. Thanks Nancy!

1. How long have you been blogging (or reading blogs)?

I started blogging last summer, so about a year. Unless you count my old LiveJournal, but let's pretend that never happened, mmmkay?

2. How has your blog changed?

I think my writing has taken on a more personal approach. When I started blogging I was clueless about which direction I wanted to take—was this going to be a blog for breast cancer patients or a blog for caregivers or a blog for anyone who's having a rough go at life (i.e., every human being ever)? Still figuring that out, but mostly I just try to be myself. And that seems to work for me.

3. What is your biggest blogging challenge/frustration?

People assume writing is therapeutic for me, but it's actually really hard. Like writing is the hardest thing ever. The words don't just flow effortlessly. Wish they did, but they don't. I don't always enjoy the process of writing as much as I enjoy having a finished piece in front of me. That (usually) makes it worth the effort.

Also, have you ever tried writing while a feral 4-year-old is doing acrobatics on the bed next to you?

And my technical skills are pretty abysmal.

4. What is your favorite post that you’ve written (or read)?

Probably this one ("We Need To Be OK With Not Being OK"). I wrote it after my second mastectomy, but it's still relevant as I'm grieving the death of my husband.

5. What are your goals for your blog? (Why do you read blogs?)

To become a better writer. To connect with people.

6. How many blogs do you read on a regular basis?

Honestly? None. I read bits here and there. But nothing regularly.

7. How do you determine what to share and what not to share; in other words, do you have blog boundaries? (or comment boundaries)

I do have to be careful about respecting my family's privacy. So I don't refer to anyone outside of my immediate family by name. In the past, whenever I wrote something especially personal I would get Paul's approval before posting it.

8. When things get hard, what keeps you blogging (or reading blogs)?

Encouragement from my readers. (Thank you!)

9. What is your biggest Cancer Land pet peeve today, right now, this minute?

This is going to upset a lot of people, probably. But I used to get slightly annoyed when people would say they were "still praying for that miracle" when Paul was dying. I'm maybe a terrible person for admitting this, and I'm definitely an imperfect Catholic because we're supposed to believe in miracles and all that? Somehow it just seemed like a dismissal of how serious things were. I knew Paul was going to die. Saying there was still a chance for a different outcome just didn't seem right.

10. What one piece of advice would you offer to a new blogger?

Just start. Focus on writing. Don't worry about getting things perfect. They'll never be perfect. Just write.

11. Share something most people do not know about you. A secret sort of thing.

I loved watching True Blood, and don't you dare judge me.

12. What do you enjoy doing in your spare time?

Reading. Prowling thrift stores. Concerts. Dancing to Disney tunes with my four-year-old. Cuddling with dogs all day long. (I'm a Rover dog-sitter, so send me your pups the next time you're out of town!)

This Is What True Self-Care Looks Like

2018-08-09T20:05:00.007-07:00

Photo by Brooke Lark on Unsplash

Things I didn't expect to make me sad:

The opening musical sequence of Moana (the three of us LIVED for that movie last summer)
Rick and Morty (in what universe does Rick and Morty make someone sad??? I know. Just...that show made Paul laugh harder than almost anything. And I reaaallly miss that.)
Seeing Ingrid sit at Paul's usual spot at the kitchen table.
Google notifications suggesting I share photos with Paul.
And oh LAWD, this: remember Paul's "Ingrid Journal?" No? It's a notebook where Paul wrote letters to Ingrid over the last year. I've been keeping my distance from it. Simply a matter of self-preservation. (I know it's going to destroy me.) Until yesterday. Yesterday, I decided to move it into the closet and I thought, "I'll just read one. One won't hurt." And wouldn't you know, I opened to a page that started with:

"Hey Liz. I'm putting this one in here for you as a surprise."

I sat down to read it. Then I read it again. And again. It was so perfectly Paul. Sweet, but not syrupy. Peppered with his signature tongue-in-cheek humor.

It was painful to read. But so good to hear from him.

I also just re-read my last blog post, and it made me uneasy. Because I was all "Look at me coping so magnificently! I'm traveling and doing things and I'm totally kicking butt at being a widow." And I wonder—am I making grief look too easy?

Because, um, it's not. It's wretched. I'm not sad all day, every day. But I'm definitely sad every single day for at least part of the day. I cry every day. Sometimes for an hour. Sometimes for two minutes. But. Every. Dang. Day.

I find that one way I've been dealing with things is by not dealing with them. In an attempt to not feel my feelings, I've been throwing myself into a number of projects around the house. Translation: my home is beginning to resemble a DIY Pinterest board, and I need help.

When you're rearranging furniture in 90-degree weather and you can't distinguish your perspiration from the tears rolling down your cheeks—something's gotta give.

Which brings me to the subject of self-care.

If you're active on any social media platform, you've no doubt encountered this ubiquitous term encouraging you to eat designer cupcakes in a lavender-scented bubble bath while listening to Enya.

While self-care can mean different things to different people, I, for one, am not a fan of the popularized "treat yo'self" version. The version that tells us all our troubles will melt like lemon drops if we just put ourselves first and get a pedicure instead of, oh I don't know—actually dealing with things in a real and appropriate way.

Not that I don't love myself a wee shopping spree in the sales rack of Anthropologie. Or indulging in one of Wegman's Ultimate Chocolate Cakes just for kicks.

I love shopping. I seriously love Wegman's Ultimate Chocolate Cake.

But I don't think it's wise to equate those things with "taking care of myself."

Self-care isn't a day at the spa

DEPRESSION: you can’t just drink tea and do a face mask and expect me to disappear

ME: *painting nails* haha what ?? cant hear you over all the Self Care

D: seek professional help

M: *puts lemon slice in my water* lmao bet
— ditch pony (@molly7anne) June 10, 2018

Self-care, like so many things, has been commodified into something we can conveniently buy at the mall. If you want to be healthy and whole you need to purchase this face mask or that bestselling novel or this detox tea.

Ultimately, though, those things just serve as distractions from our lives. And remind me: why do we want to be distracted from our lives? Wouldn't our time be better spent trying to fix our lives instead of taking periodic "breaks" from them?

Hashtaggable and pretty, this self-care craze usually aligns with the idea that to be healthy and whole, we need to be actively "doing" all the time. Reading on the beach. Going to the salon. Lighting candles.

Raise your hand if "doing more stuff" sounds like the opposite of how you want to achieve a peaceful state of mind? I can't be the only one.

True self-care doesn't have to be about "doing." It can be about not doing. It can be about lowering our expectations instead of always seeking perfection. It can be as simple as demanding less of ourselves.

We practice true self-care when we learn ways to enjoy the incongruous imperfections of our lives, instead of hiding from them nose-deep in bath suds.

True self-care isn't cutesy. It's not even easy, sometimes. It's about doing things you might not enjoy doing—like creating a budget, seeing a dentist, or cutting out dairy.

As for myself, it's making an appointment with a grief counselor.

Not an event I'll be Instagramming any time soon. But one that will do more for my mental health than splurging on overpriced skincare products.

Stay awesome,
Liz

Month 2 Of Widowhood

2018-07-22T19:42:00.006-07:00

July has been a month of "firsts." (A pattern I imagine will continue for the remainder of 2018. Or forever. Hard to pinpoint.)

Two weeks ago, I packed up the car and drove Ingrid and myself down to visit my sister-in-law in Philadelphia, which doesn't seem like a big deal (because it isn't) but to me it actually was. I'm stupidly proud that I did this. Clocking in at around seven hours, it was the longest solo road trip I've taken with Ingrid.

I know, I know. People do these kinds of things all the time. But I don't. So I'm rather pleased that I did and also that I managed to squeeze in generous portions of ice cream, pizza, and a Philly cheesesteak into one day.

Happy 4th of July!!!

Ready to explore the Please Touch Museum

Philadelphia's Magic Gardens

I also attended my first wedding without a date this month and it was awesome. Not the going-without-a-date part, but the wedding was beautiful and it was nice to not feel sad for a whole evening. Parts of that day did make me miss Paul, but being surrounded by such joy with people that I love: it's what life is all about.

I've been friends with these ladies for over 25 years. Just lucky that way.

Last week I packed up the car again for a week-long camping trip with my siblings. I've never done anything remotely like this before and I didn't know how it would go, but like no one got poison ivy or eaten by a bear so I'm calling it a mild success. Paul would have been so proud.

I'm so sorry for this, but you know I have to say it: Ithaca. Is. GORGES.

It's strange to make plans and go on trips without Paul. I want to keep moving forward, to keep living, to show Ingrid every damn beautiful thing on Earth. And I will, only sometimes doing the things that Paul loved to do makes me ache for something I can never get back. Whether it's hiking up a ravine or exploring a new city or dancing to Whitney Houston at my oldest friend's wedding—I just miss sharing those things with the person I loved most in the world.

I don't want you guys to get sick of me talking about Paul and how much I miss him and how sad I am. But I'm pretty sure I get a free pass to be melancholic for, what, a year at least? Or more probably for life. There's no manual for this stuff.

Anyway, I'll keep on keeping on because it's the very least I owe to Ingrid, who whispered to me in bed last night: "Mom, I want to be just like you." (Yes, she's usurped Paul's side of the bed and I am totally fine with it.) So the only option here is to keep showing my little dove how to be strong and brave and resilient and bold. Which, truthfully, isn't much of a challenge since she's already pretty extraordinary on her own.

xoxo,

Liz

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

2018-06-26T12:20:00.002-07:00

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

2018-05-17T15:12:00.002-07:00

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

2018-05-08T08:46:00.001-07:00

"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.

Stumbling, But Still Kickin’

2018-04-06T09:31:00.003-07:00

A few weeks ago, Paul wiped out on our front walkway.

We had just gotten home after spending 8+ hours in the hospital. I was holding Ingrid who was asleep in my arms, and I didn’t react fast enough to grab him before he fell. Which is weird because every time I replay this scene in my head, Paul is falling in excruciatingly slow motion.

He didn’t even slip on ice or uneven pavement or one of the three small steps that lead up to our house. He is just that weak. Weak to the point where he can hardly walk without assistance anymore.

He just fell backward, like a thin broomstick unable to hold itself upright without a prop. When I heard his head thwack the sidewalk, I winced and (gently) tossed a now-awake Ingrid onto the lawn to rush to his side.

Thankfully, there was a gentleman walking past our house at that exact moment. He secured his dog to a nearby lamppost and helped me hoist Paul to his feet.

Angels among us.

By now, the scrapes on his scalp have healed, but my nerves have yet to recover. I’ve taken to shadowing Paul around the house like a neurotic mother hen, clucking about handrails and muttering in an endless loop, “Be careful, be careful, please dear God be careful. Use your cane, don’t fall, here let me help you.”

“Liz, this is the bathroom.”

“And?”

“And...privacy?”

“Sheesh. Ok. Fine. BUT BE CAREFUL.”

via GIPHY

Last Thursday, we flew to Wisconsin to stay with Paul’s family for two weeks. It’s a good place for us to be right now—but it’s also a hard place to be because it’s terrible watching his family confront the reality that their sweet brother and son is slipping further away from them.

I’m pretty depleted emotionally these days, so you’ll forgive me for being somewhat unresponsive. Also, the laptop bit the dust so I’m typing this on an iPad, which is not ideal.

Love to each and every one of you. 💜

Gonna Put The World Away For A Minute

2018-02-20T13:29:00.001-08:00

Not to brag—but when I married Paul, I kinda hit the jackpot, family-wise. I gained seven delightful siblings (and their equally wonderful spouses and kids). And Paul's parents are also more than alright. ;)

My mother- and father-in-law are so lovely and so generous, in fact, that they organized a Coleman vacation in Florida this month. Most of us live in places with monstrous winters (Buffalo, Philly, Wisconsin...), so wearing a bathing suit in February felt like an absolute TRIUMPH.

Paul's family is scattered across the map. It's a big deal when they get together. I love being a part of that. I love that Ingrid will grow up being a part of that. Family is, like, where it's at.

Rockin' the pineapple with plaid. Paul—you're a legend.

"Smile for the camera, Ingrid!"

"What mastectomy?" Inordinately pleased to have found a bathing suit that works.

A Cancerversary Post, Because.

2018-02-02T07:27:00.003-08:00

“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

2018-01-09T10:42:00.001-08:00

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

15 Tweets That Will Make You Laugh If Your Life Is A Trainwreck

2017-12-15T13:19:00.001-08:00

Are you on Twitter? I've only been hanging out there since the summer. For months, I felt like a stranger in a strange land. I still feel like the gangly tween at the party, but I don't care because Twitter is where all the hilarious, raucous kids hang out and it makes me feel like maybe I could sit at their lunch table and, I don't know, trade friendship bracelets or something.

Basically, I swing by Twitter when I need a laugh. Take these with a huge grain of salt.

15 Tweets That Will Make You Laugh If Your Life Is A Trainwreck:

Don't forget to pretend you're mentally stable today.
— Jedi Cheesy Gifts (@JediGigi) January 7, 2014

*reluctantly signs reality check*

*adds "lame" to memo line*
— Alien Skier (@ClichedOut) September 27, 2017

i just heard a guy at the coffee shop say he was doing ok and thought whatever, quit gloating
— silent schmox, holy schmox (@IvoryGazelle) October 5, 2017

Sometimes I find a random screw lying around my house and I just assume it's from my life falling apart.
— 🔔MamaJingles🔔 (@MamaFizzles) June 18, 2017

but let's pretend otherwise pic.twitter.com/4R0x5wdCD2
— m a ureen (@shoelessfornow) October 3, 2017

Are things going well for me? Well, no.

But am I coping well, emotionally?

Also no.
— Erin Can't Even. (@Mom_Overboard) December 10, 2017

*gets out of bed*
Me: I've already made everything 10x worse.
— Ray Pizzaface Jr. (@muyrando) November 10, 2017

Friend: Have you tried doing things in a normal, correct way?
Me: No, that is not how I choose to live my life
— mindflakes (@_mindflakes) November 8, 2017

*clicks follow on a Dogs Wearing Pajamas Instagram account*
Things are really starting to look up for me, I am taking action to bring positive change into my life
— Scroogepants Cher (@House_Feminist) November 14, 2017

10.

ANYONE: [gives me a compliment]

ME: [pulls out flowchart] you’re wrong, and here’s why
— Jill la Jill (@JillianKarger) November 21, 2017

11.

Much like snowflakes, no two panic attacks are exactly alike.
— liv. (@liv_thatsme) December 10, 2017

12.

The only time I feel in control of my life is when I'm operating that magic, every-flavor-in-the-universe soda dispenser at Burger King.
— Rob Cee (@TheRobCee) December 14, 2017

13.

[gets hit by a car]
DRIVER: oh my god, are you okay
ME: are any of us okay
— Born Miserable (@bornmiserable) December 11, 2017

14.

It's not true that there's nothing to do in the winter. You can cry OR sleep
— Michael would like Nazis kicked off of this site. (@Home_Halfway) December 10, 2017

15.

Santa: What do you want for Christmas?

Me: To not feel broken and hopeless on the inside for once in my pathetic, lonely life

S:

M: Shoes
— Sasshole (@RidiculousSheri) December 11, 2014

I'd also like to take a moment to point out how hilarious and fantastic my friend Maureen is (note # 5). I know her in real life, and it's the greatest.

What's So Great About Being Busy?

2017-12-07T15:03:00.001-08:00

Turns out radiation leaves me wrecked, and I am running on loooow batteries, friends. Anything not required for basic survival is...just not happening. Including writing. And probably mailing out Christmas cards. Which, normally, are two activities that give me quite a lot of pleasure. Now, they just look like work. I am trying to give myself the grace to NOT do things. And to not feel bad about not doing things. (Which ERMAHGERD, is so much harder than it should be!)

Can We Stop Glorifying Busy, Already?!

Ever feel like being busy is the modern equivalent of “living life to the fullest?” We’re obsessed with being busy. It’s in vogue.

It’s also a drag.

Look at the way we talk—autopilot kicks on when people ask about our weekend—“It was good, just busy.” We don’t even notice ourselves saying it because it’s become such an ingrained dimension of how we interpret our worth. If we say we’re busy, we must be productive. If we’re productive, we must be worthwhile.

I say it. All the time! Even when I KNOW I haven’t done a bloody thing for five consecutive days. As if declaring my busyness proves, cancer be damned, I am STILL a contributing member of society.

After my morning treatment, one of the techs will often ask about my plans for the rest of the day. I’m weirdly relieved when I have a number of errands I can rattle off. Or a family outing.

Today I had nothing. Literally, nothing. And I was bizarrely embarrassed to admit that.

“So—any plans for today?”

“Nope. Um. Nope. Nothing. Just going home. To. Rest?”

Inside, of course, I was thrilled to finally have a day with nothing I had to do. Thrilled and ashamed.

This time of year, especially, we run around like chickens with our heads cut off, and we’re happy to do it because it makes us feel important and needed and valuable. We wear our busyness like some twisted badge of honor. But—

How exactly does running ourselves ragged contribute to our well-being?

It doesn’t. It makes us stressed and miserable. I don’t want to be stressed and miserable.

And I’m not talking about our jobs or taking care of our kids or any of the things we HAVE to do. You should probably keep doing those things. But that doesn't mean you can't give yourself the space to just do...nothing. (It's really ok!)

Good Things Happen When We Stop Trying To Do It All

Photo by Nine Köpfer on Unsplash

When we’re not distracted by a relentless flurry of activity, something really cool happens: we connect, we reflect, and we grow. Three things I'd wager that are more important (and fun and pleasurable) than an overbooked planner.

When we slow down and eliminate even just a little of our self-imposed busyness—that’s when most of our so-called “a-ha” moments occur. Stepping off the hamster wheel gives us clarity. It lets us enjoy the things we insist are important—leisurely moments with the people we love, watching our children delight in nature, a rich inner life.

I don’t like to credit cancer with enriching my life (cancer didn’t make me grow—I did) but treatments did force me to reevaluate how I spend my time and energy. There were moments in the last year when I felt like I was juggling a dozen swords and flaming torches while balancing on a unicycle. I was exhausted and frazzled.

But I think it's safe to blame a lot of my exhaustion and general frazzledness on activities I didn’t NEED to do. (that and chemo running through my veins. But mindless busyness, mostly.)

Here's the thing. There is value and opportunity for growth in the moments when our busyness comes to a screeching halt. I know that sounds like the advice you’d get from a bearded, blissed-out mountain guru, but I stand by it.

A few years ago, Tim Kreider wrote a hugely popular and insightful article called “The ‘Busy’ Trap” for the New York Times. In it he says:

“Idleness is not just a vacation, an indulgence or a vice; it is as indispensable to the brain as vitamin D is to the body, and deprived of it we suffer a mental affliction as disfiguring as rickets. The space and quiet that idleness provides is a necessary condition for standing back from life and seeing it whole, for making unexpected connections and waiting for the wild summer lightning strikes of inspiration—it is, paradoxically, necessary to getting any work done.”

You are not a loser for taking it easy today. Relaxing doesn't make you a failure. You’re not less ambitious or dull or pathetic if you want to check out for the afternoon. And. Just. Do. Nothing.

Do you ever feel pressure to fill your days with busyness?

Do you feel guilty or lazy when you aren’t busy? Like you should be finding something productive to do with your time?

Or do you consciously try to set aside time for just “being” instead of “doing?”

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

2017-11-07T14:01:00.002-08:00

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?

No Dress Rehearsal—This Is Our Life

2017-10-25T12:27:00.001-07:00

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:

5 Problems With Pinktober—and What We Can Do About It

2017-10-14T15:03:00.015-07:00

If the massive Pink Ribbon flags hanging from the street lamps up and down Main Street didn’t clue you in: October is Breast Cancer Awareness Month.

I'll be honest. Towards the end of September, I began to dread the arrival of “Pinktober.” And this is why—I find everything about it incredibly polarizing. There are your tutu-clad marathon fanatics who welcome the onslaught of everything pink with eager enthusiasm. And then there’s the vexed anti-pinkers who find the current theme of Breast Cancer Awareness Month to be both alienating and misdirected.

So where do I stand in this Sea Of Pink? Where do I fit into this equation as a young breast cancer patient still undergoing treatment? And what more can I possibly offer to the dialogue already being had on other (much more lucid and far-reaching) cancer-related blogs?

First, I’d rather not piss and moan about things. Negativity like kills my vibes. But still. I think this frenzied pink rigmarole is worth addressing.

Last month, I wrote about Mesothelioma Awareness Day and the very real and very present danger of asbestos. Spreading awareness about Meso made sense to me. Because people are not aware.

But breast cancer? By all means, correct me if I’m wrong, but it seems that most people are already aware of breast cancer’s existence and general lousiness. At least, the people who seem to be the target of this rah-rah-go-pink! cacophony are already aware.

And yet, every October the Pink Ribbon Campaign continues to clamor its message of “awareness” from the rooftops of the world. Also, on yogurt lids and bubblegum machines.

Why do I (and plenty of other cancer advocates) have a problem with this? Pull up a chair.

1. The Sexualization of Breast Cancer Awareness Month

One of the biggest beefs I have with Breast Cancer Awareness Month is its use of overtly sexualized slogans that are slapped onto every thinkable surface: bumper stickers, flyers, posters, social media posts. The Keep A Breast Foundation, for instance, hawks merch with the tagline "I Love Boobies." Seriously.

There’s also: “Save the Ta Tas,” “Save the Hooters” “Save Second Base,” “Cop a Feel” “I Stare Because I Care” etc. etc. etc. Some ads feature young, bare-chested models in provocative poses with the call to action “Save a Life, Grope Your Wife.”

I get it—adopting a playful, lighthearted tone isn't a bad marketing strategy. When you're selling, oh I dunno, designer bakeware or slippers. But distributing lewd t-shirts to spread "awareness" about a disease that KILLS people and destroys lives? Barf.

Sheesh—lighten up, Liz. They're just words. Funny words! At least they’re raising awareness and some righteous dollar bills.

Eep. I mean: there's gotta be a better way to fund cancer research than reducing women to a pair of knockers.

First, these campaigns suggest that the real problem with breast cancer is the current rate of breast casualties. Not, um, all the deaths it causes. Which: guys?! We need to focus on saving lives. Not just boobies. A fact that my surgeons made quite clear from the beginning—they were, above all else, in the business of removing cancer. They wanted to save my life, not just my breasts (though, they'd swing for both.)

Also, as a 31-year-old woman who had to relinquish both of her breasts to survive, I find these crude slogans to be a real slap in the face. A cruel reminder that my body is more than a little bit wonky. That is a hard enough concept to confront, without all the help from tweets about going braless to support breast cancer research. The last thing I want to see flooding my social network feeds are cutesy selfies featuring healthy, perky, non-cancerous breasts. Not helping.

2. The Commodification of Breast Cancer Awareness Month

Cause-related marketing can be a swell PR move for companies looking to schmooze the public while generating revenue. In theory, it sounds like a slam-dunk: Company X gives your cause visibility, Company X makes money, everybody’s happy. It’s a win-win.

But what if Company X is manufacturing products with known carcinogens? (KFC’s “Buckets for the Cure” campaign comes to mind.) And how much of their profits will actually go to useful breast cancer charities? (as in charities that fund research and/or use funds to directly help people with breast cancer pay for things like transportation or treatment or groceries.) Will Company X cap donations at a certain dollar amount without alerting consumers to this fact and pocketing all subsequent profits once this limit has been met?

This is where things get sleazy.

I won’t belabor the issue, but just be cognizant of the bookoo bucks corporations are raking in all in the name of “raising awareness.”

Think Before You Pink is a useful project developed by the group Breast Cancer Action. They’ve laid out 4 questions you can ask yourself before making a pink-related purchase. I’ve found the information on their sites enlightening, so maybe take a gander.

3. What About the Menz?

Before one of my last chemo infusions, a nurse distractedly took my vitals, fumbling with my mediport. The lines on her forehead suggested worry, and she looked visibly ill when her phone rang in her pocket.

“It’s about my son,” she said. “He just had a biopsy this week. They highly suspect he has breast cancer. He’s 24.”

That’s right. A 24-year-old MALE with breast cancer.

News flash—men get breast cancer, too. So why all the pink?? I can’t know exactly what it would feel like, emotionally, to be diagnosed with breast cancer as a man. But I’m inclined to think all this pinkwashing adds insult to injury. Breast cancer is presented as a woman’s disease (it isn’t) so all this pink shite everywhere has to be mortifying for some men with breast cancer. It's gotta be.

There’s also the terribly misguided mantra that rallies breast cancer patients to “Fight Like a Girl!” Oh. No. Stuff like that truly embarrasses me. Stuff like that needs to STOP.

Breast cancer isn’t a cutesy girls’ slumber party where we play Dream Phone and paint each other's toenails pink.

It’s a crap disease that takes lives—men and women both.

4. What About the Metastatic Peeps?

Breast Cancer Awareness tends to put the spotlight on cheerful survivor stories, largely failing to discuss metastatic breast cancer (breast cancer that has spread to other parts of the body).

While everyone is busy painting the town pink for the whole month of October, metastatic breast cancer patients are officially recognized on ONE measly day. October 13th. A day that is (horrifyingly) shared with No Bra Day (grossssss). This is not enough.

These “metsers” often feel marginalized during Pinktober because their stories don’t fit alongside the stereotypical rosey fairytales of “conquering cancer.” Breast Cancer Awareness Month also posits the false idea that this disease is completely preventable and curable, which only further stigmatizes those with stage IV breast cancer. Like it’s their own fault for not catching things sooner.

And all of that money being raised for breast cancer research during the month of October? A paltry 2-5% of it will be allocated for the study of metastatic disease. Again, this is not enough.

5. Fueling Misconceptions and Perpetuating Stigmas

My final contention with Pinktober is the number of misconceptions about breast cancer it continues to feed the public. The crux of the Breast Cancer Awareness movement lies in its push for “prevention” and “early detection.” Which is great. Who doesn’t want to prevent cancer?

However, their battle cry that “early detection saves lives!” is misleading at best. Pink Ribbon madness has perpetuated the narrative that if you identify breast cancer early enough, you are guaranteed survival. But studies show that this is not the case. Some tumors are going to return, and many will be fatal regardless of how early they were detected.

The Pink Ribbon Movement generally fails to show the reality of breast cancer. By denying a voice to the metastatic population, and drowning our sensibilities with sunshiney platitudes, most awareness campaigns are missing the mark completely.

They also tend to promote the phony idea that optimism and positivity are all you need to “beat” cancer. Smiling will not cure my cancer. Do I really need to keep spelling that out?

I hate to admit it, but prior to my own diagnosis, I was equally swept up in the saccharine, cotton candy image of breast cancer. I, too, considered it an easily treated, curable disease.

I remember sitting next to my husband at an October NFL game a few years ago, the field swathed in pink.

“What is their deal? How much attention do they need for crying out loud?! At least they have a treatable cancer.”

These snarky asides were likely the products of two major forces clouding my perception: (1) The largely dressed-up, pink-ified version of breast cancer I had been spoon-fed for years, and (2) the fact that my husband had been duking it out with a relentless and incurable cancer for years. Where were HIS blue mesothelioma cheerleaders?? The whole thing put a bad taste in my mouth.

That is a problem. When your cry for awareness ends up distracting people from the reality of what you’re trying to achieve—which, let’s remind ourselves, is fewer deaths—then yeah, I’d say we’ve got a problem on our hands.

The numbers don’t lie—we have very little to show for the decades of Pink Ribbon madness. Breast cancer will continue to claim the lives of over 40,000 people this year. What started as a noble (and necessary!) idea has morphed into a strange, commodified, mutant strain of nonsense.

What Can I Do About It?

So, Breast Cancer Awareness Month isn't perfect. So what? What does that have to do with me? What can I do about it?

For one thing, you can shop mindfully. Remember: Think Before You Pink! Or better yet, donate directly to a reputable breast cancer charity that is meaningful to you. (Here's a couple of options from Popular Science.)

You can also use social media to steer the conversation in a more positive direction. Please don’t promote sexually-charged posts that masquerade as advocating for breast cancer awareness. Try to consider how these phrases and images can actually do more harm than good. If you want to support a friend who is fighting breast cancer, educate yourself and share useful, factual information about the disease.

I'll admit, I was apprehensive about addressing some of the flaws I see with Pinktober because I don’t want to alienate people who actually find support in the Pink Ribbon’s message. I don’t want to sound bitter or cynical or angry. I’m a total Hufflepuff if you must know. You won't find me running through the aisles of Walmart in a frothy rage, knocking over displays of pink-bejeweled teddy bears. I’m massively grateful for what are mostly people's good intentions. Pink ribbons and all.

To witness a positive shift in the currently watered-down goals of Pinktober, I think we need to refocus the message. To showcase the reality of breast cancer, instead of trivializing it. To provide science-backed info on prevention and risk.

All of which I will continue to do. And I’ll do it with my non-pink mastectomy bra on, thankyouverymuch.

How do YOU feel about "Pinktober"?

Are you a fan of the Pink Ribbon Campaign? Do you find comfort and support in its positivity?

Or are you weary of the pinkwashing and everything it entails?

Appearance ≠ Health (so be nice to humans!)

2017-10-06T13:14:00.004-07:00

sidenote: I originally wrote this piece a couple of months back, while recovering from my first mastectomy. Then I got crummy news about my cancer, and this post seemed totally irrelevant so I never published it. I've been saving it for the right time. Which is now because the writer-y part of my brain is kaput, and I am overwhelmingly TIRED.

"Be kind. For everyone you meet is fighting a battle you know nothing about."

Yes, I did just open this post with an authorless quote that sounds like it was swiped from the Pinterest board of a delusionally optimistic sorority girl.

And yet. Read it again. Because it's actually kind of important.

When people see me in a bandana trying to wrangle a Hershey bar out of my toddler's death grip, they already know my battle. It's visibly obvious I've been through chemo. Either that or my fashion sense is tragically rubbish. But most people (I hope) assume the former.

This does have its benefits. Strangers are ever so nice to you when they can see you have cancer.

Case in point: the girl who shooed away my dollar bills while serving me gelato.

Also, the couple who let me and my sister temporarily take their front-place spot at The Shins concert.

Also, the lady who immediately ran to my aid after I dropped a carton of eggs in the checkout line at Wegmans.

Also, that other lady who ran to my aid after I dropped a glass terrarium at Michael's a week later (Yes, this is my life. These things happen to me.)

I'd like to say people choose kindness regardless of the recipient's headwear. The truth is, though, I noticed a significant increase in kind actions on my behalf after I started chemo.

Which I so appreciate. It reminds me of how accommodating people were when I was very obviously pregnant. Perfect strangers treat you like royalty when you're visibly expecting—pulling out chairs and helping you bag groceries at Aldi. (how's that for nice?!)

This is all good and lovely, people helping chemo patients and chubby pregnant ladies. But what about the women who are in their first trimester of pregnancy? You'd never know it by looking at them, but they're the ones with their heads in the toilet while the rest of us 3rd trimesters stuff our faces with pizza pockets. It seems so unfair.

Which brings me to Paul. To the unsuspecting stranger, he appears perfectly "normal" (if you ignore the beige support stockings and typically unmatching getup.) He doesn't look sick. He doesn't look like he has terminal cancer. Outwardly, he appears fine, so people treat him as such.

"As such" means: impatiently. Rude, even. This makes my head & heart hurt. I may sound like a defensive mother whose child is being bullied on the playground, but when people get ruffled because my husband is not walking quickly enough for them in the airport terminal, well, I just want to punch their throats.

He may look like your average spry 32-year-old, but he can barely make it up a flight of stairs without getting winded.

He may look totally healthy, but sometimes he coughs so hard he throws up.

Cancer isn't the only "invisible disability", of course. There's also MS, Epilepsy, Cystic Fibrosis, depression, people with chronic pain, and on and on and on.

The takeaway here is simple: Be kind, be kind, be kind. It's so easy, and it goes such a long way.

Love,

Liz

Some Good News, Huzzah!

2017-09-27T22:02:00.001-07:00

This space could use a jolt of happy, wouldn’t you agree?

I had my first post-op appointment with my surgical oncologist yesterday. Remind me to never schedule things in the afternoon. Waiting around turns me into a strung-out lunatic. By the time we were ready to leave, my stress level had surpassed its breaking point—Paul drove. I cried.

Perched on the examining room chair, I fidget with the ties of my pink cover-up. My doctor pokes his head in the door, smiling. Smiling is a good sign. I like smiling.

We talk about how I’m feeling. He takes a look at my incision. He decides it’s time to remove the sutures.

“I’ll be right back. I’m just going to run and grab a suture removal kit, ok?”

Ok. But um, like—do I still have cancer?

As he’s pulling out my stitches: “So the pathology, it all came back negative. The margins are clear.”

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And you didn't open with that because...?!

But who cares! I am blissed out of my damn mind.

To clarify: when you have a mastectomy, a rim of normal tissue surrounding the tumor is also removed, which is called a "margin." My first mastectomy in July resulted in "dirty" or "positive" margins, which is why I required a second operation.

It turns out there is still one area where the margin is "close," meaning cancer cells were not far from the edge of the removed tissue. This isn't ideal, but my medical team is confident that adjuvant radiation therapy and 10 years of Tamoxifen will be more than enough to make sure this cancer knows it's not welcome and it needs to find another couch to crash on.

I practically skipped down the steps to the parking lot. I was giddy. Like a 50-pound weight had been lifted from my shoulders.

And then we got into the car and headed to our second appointment of the day: Roswell Park's Assessment and Treatment Center.

It's not an untypical day—ping-ponging from a moment of dizzying rapture back to the unhappy reality of Paul’s worsening symptoms: feverish temps, stomach pain, vomiting.

It was the usual succession of tests—bloodwork, a urine sample, x-rays. Most of our time is spent waiting.

I crawl into the small space Paul had made for me in his hospital bed, avoiding the tubing that was pumping sodium chloride into his depleted body. We watched Chopped on the Food Network, and I pressed my face against his bony shoulder. Everything—the flit of nurses in-and-out, the boring cable TV, the rough hospital linens—it’s all so familiar. How many days have we spent like this?

Nothing particularly stood out with any of Paul's test results, so they sent us home with a short-term antibiotic (just in case) and instructions to call in the morning to schedule another blood transfusion.

Which is how we will be spending our day tomorrow.

Highs and lows, man. Highs and lows.

What is Mesothelioma, Anyway? 10 Quick Things You Should Know

2017-09-23T19:43:00.002-07:00

September 26th is Mesothelioma Awareness Day, so I’d like to turn the mic over to my dear husband, Paul. “Enough with the Liz chronicles. We want Paul!” said everyone, everywhere.

I hear ya, I do. Let’s talk about meso.

If you’re asking Google (like I did 5 years ago when Paul was diagnosed) you’ll mostly find lawyer ads and a lot of bleak statistics. Like these numbers are not going to make you feel good.

There’s a lot of unhelpful information about mesothelioma floating around the Internet. So it was by divine intervention (or something like it) that I was able to find the Mesothelioma Applied Research Foundation while desperately searching for financial assistance a few years ago.

This organization is the real deal. They are:

“the only nonprofit, charity organization dedicated to ending mesothelioma and the suffering caused by it, by funding research, providing education and support for patients and their families, and by advocating for federal funding of mesothelioma research.”

It's true! Personally, the Meso Foundation helped our family finance a trip to meet with a specialist in Chicago. They also host a yearly Symposium on Malignant Mesothelioma, which we attended in 2015. This event connected us with other specialists in the field as well as families struggling with the same issues we were (a first, for us.)

I’m no clairvoyant, and I don’t presume to understand the seemingly insignificant, everyday decisions that can redirect our ever-flowing lives. But I do believe discovering the Meso Foundation truly CHANGED OUR LIVES.

Because: where would we be if they had never introduced Paul to the team at the National Institute of Health? Would he still have elected to be treated by them? Would he have chosen a different course of treatment? Would we have been given these years that we’ve enjoyed together?

I don’t know.

What I do know is that, for the average person, mesothelioma is a disease shrouded in mystery. Everyone, it seems, has some connection to breast cancer. Maybe their sister had it, or their aunt was recently diagnosed, or they went through treatment themselves. Quite literally, and sadly, everyone I talk to has a breast cancer story.

But when someone asks what type of cancer Paul has, it's all raised eyebrows and variations of “oh, the cancer with all the lawyer commercials? How did he get that?”

Most people know two things about mesothelioma: (1) It’s associated with asbestos exposure, and (2) it can make you filthy rich if you talk to the right lawyer (not the case.)

In the spirit of patient advocacy, I’d like to shed some light on the lousy cancer my husband has been wrestling with for the past 5 years.

10 Things You Should Know About Mesothelioma (because this stuff kills)

1. Typically, meso is caused by asbestos exposure—but not always. As Paul’s surgeon put it, “sometimes it’s just bad luck.” We’ve never been able to pinpoint a definitive place or time where Paul could have been exposed, though we have our suspicions. But suspicions do not a lawsuit make. (We've tried. With three different law firms.)

2. Asbestos is still present in thousands of older construction and housing products like insulation, siding, and floors. If your home was built before 1970, there’s a chance asbestos is lurking in the materials. Which brings us to fact # 3...

3. I know DIY is all the rage, and there are at least 16 variations of Fixer Upper on TV (I love these shows, their hosts are magical visionaries.) But don’t tear up your dated kitchen tiles before calling a certified abatement crew to identify any questionable materials in your home. Asbestos is safe as long as it’s contained, but once you disturb it, it’s game over. Let the professionals remove it or encapsulate it. The right way.

4. Asbestos STILL isn’t banned in the US. This makes my blood boil. The EPA has made some strides since the '70s to regulate asbestos-containing products. Asbestos is banned, for instance, in corrugated and commercial paper. However, in the United States companies are not barred from importing and distributing many products that contain asbestos such as clothing, vinyl floor tile, and car gaskets.

5. Mesothelioma has a loooong latency period. Often, symptoms don’t show up until 20-50 years after the initial exposure to asbestos. By the time the cancer is detected, it’s usually very advanced. For all we know, Paul could’ve ingested a microscopic asbestos fiber as an infant, where it grew silently for years.

6. Mesothelioma can be contracted through secondhand exposure. This occurs when a family member brings home asbestos particles on their clothing or hair. Patients can be exposed as innocent children and develop this deadly cancer decades later. Not okay in my book.

7. The lungs aren't the only organs that can be infiltrated by meso. It can also invade the lining of the heart (pericardial meso) and the lining of the abdomen (peritoneal meso), which is what Paul has been fighting for years.

8. Mesothelioma is an incredibly rare cancer—only 3,000 new diagnoses are made every year. (A disease can only be classified as "rare" if there are less than 200,000 cases of it per year.) Peritoneal meso makes up only 20-25% of those 3,000 cases. What can I say—I'm in love with one rare fellow.

9. Mesothelioma is one of the least funded cancers by the National Cancer Institute.

10. Only 8% of mesothelioma patients survive 5 years post-diagnosis. A statistic that, at one time, made my stomach drop. Paul, I am happy to report, just passed the 5-year mark this spring. Huzzah!

If you're so inclined, feel free to share this post to help spread awareness about this stupidhead disease.

We Need To Be OK with Not Being OK

2017-09-15T19:33:00.003-07:00

Ten ordinary tasks that are flat-out impossible after a mastectomy:

getting out of bed
getting into bed
getting comfortable enough to sleep in said bed
opening the refrigerator
opening pill bottles
opening anything
staying awake for more than a few hours at a time
putting on t-shirts
sitting on the same couch as a squirmy 3-year-old
updating your blog, apparently

Things went fine on Monday. As fine as these things can go. Zero complications, other than feeling a bit barfy. No skin grafts were necessary for the wound closure. Thrilling news! So pleased.

By Tuesday afternoon, I was home—and I’ve been sleeping ever since. I wouldn’t be surprised if Ingrid equates adulthood with perpetual naps and constant doctors' appointments. Because that is what the adults in her life do: sleep and go to the doctor. She may never want to grow up.

How does this surgery compare to the one I had in July?

Pain level is about the same. Very controllable with meds. This time around, though, it’s like my body is confused about where exactly surgery took place. I have zero pain at my incision site. For the most part, the right half of my torso is entirely numb—scar tissue and all that.

You know where I hurt? My bum. Swear to God. The pain starts at my lower back and radiates down to my derrière and upper thighs. My surgeon anticipated lower back pain because of all the skin-stretching going on, so I’m not concerned. Just sore.

“I’m fine, I’m fine, I’m fine, I’m fine, I'm...What Were We Talking About?”

How am I doing emotionally? Eh. The first few days after surgery, your brain can only process things on the most basic survivalist level. You just want to rest, to stop hurting, to be able to stomach a bowl of oatmeal, to heal.

Days pass, and you start to feel better physically. Your brain acquires enough fuel to move beyond “let’s just stay alive today.” This is where the emotional distress creeps in, ever so stealthily. Or maybe it kicks in the door full force, robs you blind, and leaves you for dead.

I’d say, on an emotional level, I'm coping less than perfectly. I mean, I’m not locking myself in the bathroom to cry all day or anything. Most of the time, I’m somewhat getting through my day. When I wake up, I brush my teeth and give my kid cereal.

But there’s a new heaviness with this second surgery. Partly because I’m anxious about the pathology results. Partly because I’m unhappy with the way I look. Partly because I feel guilty about being unhappy with the way I look. (Emotions are ALL over the map. Tamoxifen isn’t doing me any favors, either.)

In our house, there’s this chorus that plays on loop: “I’m fine, I’m fine, I’m fine, I’m fine.”

“I’m tired, but I’m fine.”
“It’s painful, but I’ll live.”
“I’m repulsed by my own skin, but haha, can’t complain!”

I will live. And there’s plenty more reason for me to be happy with my life than to complain about it. BUT...am I really fine? Is that seriously the best adjective I can come up with to describe my current emotional state? Am I really 100% OK with having my chest butchered like a slab of meat? No. I would say, um, I'm very not.

Yesterday was the first time I really looked at my body without clothing. Like really looked at it.

I grossed me out.

I have an 8-inch incision that runs diagonally from my right armpit to just past the middle of my chest. It meets with a curvy 5-inch vertical cut running down the right side of my torso.

The scars are unpretty, but I can live with them. What bothers me, really, is my lopsidedness—there’s still an (ugly) implant where my left breast used to be. I’m all for nixing both implants to achieve some balance, but my doctor didn’t want to add more surgery to what was already a major operation. He preferred to minimize even the smallest risk of complication or infection, and rightly so.

I will be okay. When I am. Until that time, I’m going to be a little bit sad about my uni-boob. I’m going to be mildly (and temporarily) unhinged while I’m waiting for test results.

You don’t need to bury your ugly feelings beneath a layer of rainbows and unicorns

And anyway, I’m more than tired of these sparkly images of women jumping back in the saddle after breast surgery. I’m tired of the trite Pinterest memes about “cancer-thriving” and “feeling strong and beautiful in your skin” after a mastectomy. Hogwash. I feel the opposite of strong and beautiful in my skin. I’m self-conscious and uncomfortable with my asymmetry.

It takes time—and counseling and drugs and mindfulness—to achieve that kind of peace. Let’s not kid ourselves.

Let’s also let ourselves be sad. And angry. And human. Why are we so quick to squash down signs of pain? Why are we obsessed with being okay with NOT okay things? Why do we try to put a positive spin on every last thing that happens to us?

Because we want our sad stories to come with happy endings. We like our challenges in life to come paired with a cute morality nugget. Pain is more digestible when it's wrapped in a tasteful bow. We like it to be tidy and meaningful.

Plain old suffering is not the stuff of inspirational Instagram posts. It’s icky, and it makes us uncomfortable, and we just don’t like it!

Poking around an online cancer forum, I found a thread where a woman was struggling with her husband’s recent setback in treatment. She was seeking advice on how to remain optimistic in the face of unhopeful circumstances.

I prickled at one response that read something like: “You just push through it! That’s all you can do—never let him see your doubt. You have to stay optimistic for your husband, all the time.”

Nope. No and no! We all work through things differently, but this is just bad advice.

I’m not advocating indulgent sniveling marathons. I’m not suggesting this woman throw in the towel or that she views life through the murky lens of bitterness.

What I’m suggesting is that she ought to be HUMAN. She’s entitled to feel feelings. Even the ugly ones. Especially the ugly ones. It would likely benefit her husband to witness them on occasion.

It’s okay to not be okay

I’ve been both a caregiver and a cancer patient, so I feel like I have the authority to say: It was OKAY to see my husband struggle with my diagnosis. It was OKAY to see him cry on my behalf. It was OKAY for him to lose it for ten seconds when I took my bandages off this week.

I mean, it sucked to see him so distraught. It wasn’t pleasant (remind me—what part of cancer is?) But it made me feel loved in a very raw and personal and honest way.

Truthfully, it would have irked the shit out of me if his response to my distress during chemo was a plucky “You’ll get through it, honey—I believe in you!” It would have been uncool of him to smile with fake optimism while my doctor delivered more bad news.

It is perfectly reasonable and healthy to run the gamut of emotions here. Cancer will do that to you. Life will do that to you.

As the lovely writer Nora McInerny puts it:

“The cure for grief is not ‘be not sad’ and the cure for anger isn’t ‘be unangry!’ It’s feeling all of these things, even the uncomfortable ones, without judging yourself for them.”

Right on!

So feel your feelings. The gross, painful ones too. Stop apologizing for them. Work with them and through them.

That’s how we’ll arrive at being okay. Not by pretending things are brilliant when they aren't. Because, really, that just breeds confusion and shame among people struggling with their own ugly feelings. (ie: every single human)

Instead, let's be helpful by being honest. Let's give ourselves permission to be something other than "fine." Let's be okay when we're ready to be okay.

A Q&A Blogging Challenge

2017-09-06T07:09:00.001-07:00

I’m a little late to the party, but a fellow breast cancer blogger, Nancy Stordahl, who I so admire, proposed a summer blogging challenge last month. I got Paul’s answers for these, too. And they’re good.

1. Share anything you want about your cancer diagnosis (or your loved one’s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable sharing.

Liz: I was diagnosed with Invasive Ductal Carcinoma, stage IIIb, in February 2017. The cancer was in my right breast and had spread to my underarm lymph nodes. I was 30. No family history, really. Just one cousin on my dad’s side who was also diagnosed fairly recently. Because a lot of people ask: I found a lump so I went to the doctor.

Paul: I was diagnosed with Peritoneal Mesothelioma in 2012 at age of 27. No family history. I guess I felt overwhelmed when I heard the news. I didn’t even really know what Mesothelioma was at the time. I definitely didn’t know how serious and deadly the disease was. I thought I could be cured.

2. What is the most outrageous thing someone has said to you about your (or your loved one’s) cancer?

Liz: Oh, there are quite a few of these. A well-meaning nurse told me during pre-op “At least you’re getting a new set of breasts. It’s like an upgrade!” Oi. It’s not. I can appreciate that she just wanted to make me feel better, so it didn't offend me. But it was still the very opposite of what you should say.

Paul: I was having a near-death reaction during a clinical trial at the NIH, and someone Facebook messaged Liz to say “they were praying for us, but Paul shouldn’t be getting chemo or other harmful cancer treatments and that’s why his body is reacting this way. Hugs!”

Also, people telling me “all I need to do is change my diet.”

3. What is your biggest cancer pet peeve? I know it’s hard to choose, as there are many to pick from, right? But what irks you the most?

Liz: People touting basic self-care habits as cancer prevention. Like if I eat this dish of brussel sprouts instead of this dish of Panda Paws, my cancer will shrink. It won’t. It will just make me sad.

Paul: Anything that starts with “I read an article…”

4. What is something you want others to know specifically about breast cancer?

Liz: I’ll admit, I was in this camp before diagnosis, but people—breast cancer is total crap. It isn’t the easy-breezy cutesy disease it’s portrayed as. It KILLS people. It’s made our life very hard.

Paul: This is about Meso, not breast cancer. But I’d like people to know that not everyone gets a monetary settlement. When people hear "Mesothelioma," they usually associate it with all the lawyer ads. We never received any money out of this.

5. If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?

Liz: At first, I didn’t worry about it. Not at all, actually. I was fully confident that if I just pushed through treatment this year, I could get on with my life. Now that we know my chemotherapy did NOT do what it was supposed to and my mastectomy did NOT do what it was supposed to, I worry. I keep myself distracted and busy enough that I don’t fritter my days away with worry. But it’s there. I’m terrified of it metastasizing.

Paul: My biggest worry is that I won’t be around when Ingrid is growing up.

6. Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?

Liz: Eh, no. Why is cancer the one disease that people expect to be morally edifying? Like I have this terrible disease, my husband has this terrible disease, and it sucks. If anything, cancer makes us grumpy and tired and sad.

Paul: No, cancer did not make me a better person.

7. What is your favorite cancer book? (No, I’m not fishing for mentions of mine!)

Liz: Oh, I haven’t read any yet. But Paul Kalanithi’s When Breath Becomes Air comes highly recommended by a bookish friend whom I trust. Also, I LOOOOVE Nora McInerny. She wrote about her husband’s battle with brain cancer on her blog, My Husband’s Tumor, and I really need to read her recent memoir It’s Okay to Laugh: (Crying is Cool Too). She is hilarious and honest and wonderful.

Paul: Oh, I don’t read that stuff.

8. Besides your family, where do you turn for emotional support?

Liz: My cat. Seriously, haha! I’ve received loads of pamphlets with different young adult support groups that people tell me “I just have to join because it will help you so much!” But I just don’t go for that stuff.

Paul: My Faith.

9. How many cancer blogs do you read and why do you read them?

Liz: I don’t read any regularly. Mainly, because I am sort of new to this whole thing. I do like Nancy’s Point, though. She is honest. I appreciate sincerity and truth when it comes to cancer. No fluffy optimism for me.

Paul: I just read Liz’s.

Liz: Aw, thanks Paul. <3

10. Do you call yourself an advocate? If so, what drives you?

Liz: I don’t. My life is too full right now to focus on anything other than “getting though.” Being an advocate for anything sounds very important, though.

Paul: Ain’t nobody got time for that.

So, sunglasses. Over or under the headscarf???

An Update on Paul (things are mostly stable)

2017-09-03T07:50:00.003-07:00

I can't write a post about "scanxiety" and then leave you hanging with the results. Actually, I can. And I did. And I'm sorry.

My in-laws are in Buffalo for a quick visit, so writing has taken a backseat. I have precisely ten minutes for you. Which could be used to clean the kitty litter. Or vacuum the crumbs from our breakfast of Saltines this morning. (I am a good mom I am a good mom I am a good mom)

The litter box can wait. So can the crumbs, according to an incoming parade of ants.

Paul's scan results showed that things are mostly stable. There is some tumor growth—but it's minimal. Of course, we'd like zero tumor growth. We'd like tumor shrinkage. But I'll take mostly stable right now.

His kidneys are functioning normally again. His hemoglobin went up to 8.7. These are all good things.

Symptoms are reappearing, though: cramping, gagging, vomiting, coughing. At this point, it's hard to say if these are caused by the cancer itself—or if they're residual effects from the harsh chemos he had last winter. Either way, they're miserable. Paul would so love to brush his teeth without triggering his gag reflex. Wouldn't that be something?

So we're beginning to look at new clinical trials. I'll update as things come to light.

Stay gold, xo.

Yes, Hi. I'll Take Another Mastectomy and a Blood Transfusion, Thanks!

2017-08-25T10:07:00.003-07:00

I was not in a good way last week. Monday didn't help (does it ever? Such a jerk.)

We kicked things off with my (super genius) plastic surgeon. He filled us in on some things. Like the terrible (but super genius) stuff he's going to do to my body.

Paul: "I don't know if it's my super low hemoglobin or the description of your surgery, but I felt really lightheaded in that appointment."

You and me both, dude.

I don't do gore. Violence, of any kind, affects me on a profound level. (I'm sensitive, ok??) I "watched" Game of Thones—but missed probably 90% because I spent the whole time shielding my eyes, shrieking "no no no no no no no no no stop stop stop stop stop stop." But surgeons don't mind talking about blood and muscle and great green globs of greasy grimy gopher guts. It's their thing. They like it. (weirdos lol)

I'll spare you the parts that had my head spinning. Basically, this is what's going down on Monday:

Surgical oncologist will remove the implant in my right breast.

He'll cut away loads of tissue and chest muscle. How much exactly will depend on what the pathology tells him. Either way—when he's finished there is going to be a massive "hole" where my breast once was. This hole goes beyond where my breast once was, in fact. He drew on me with purple pen to mark just how massive this hole is going to be. It made me weepy while getting dressed the next morning.

Here's where things get interesting: my plastic surgeon will have this massive hole to contend with. He can't leave me like that. He has to find a way to close me up. There are a few ways this could go:

PLAN A. Best case scenario— he's able to stretch the skin over my chest and stomach to meet and close the hole. This would make everyone very happy. It will look ugly, but hey, no option at this point is going to be pretty. There is one tiny little hiccup with this approach, though.

Dr. S.: "I don't know if you're aware of this about yourself...but you are really thin."

One instance in life where this does NOT benefit my health! I don't have a lot of extra skin to work with, which complicates the closure. Thanks to Ingrid, the skin over my belly is a little more pliable, but you can only stretch skin so far. Which is why we have...

PLAN B. If he's unable to seal me up with what skin is left on my torso, he'll turn to my thigh for a skin graft. For whatever reason, this is the part that made me feel like passing out. The problem with this plan is that the graft might be too thin to withstand radiation (which I will need.) It could end up a singed & blistered mess, prone to infection. And so we turn to...

PLAN C. If that doesn't pan out, he will take a chunk of my latissimus dorsi (lowerback-to-armpit muscle) to patch up my front. OR he might combine PLAN B with PLAN C to ensure a thicker graft that will be protected from radiation.

So you see, there are options. Which is normally a good thing. And yet. It's the uncertainty of the final outcome here that sets my teeth on edge.

When I woke up from my first mastectomy, I was met with good results and a happy surprise: implants are already in place! No need for expanders! Will it be champagne or pink wine, m'lady?

When I wake up from this 2nd surgery, well. It's anyone's guess.

Plus. That thigh slicing bit. *shudder*

Paul: "The part about slicing your thigh made you sick?! That's the least of it. What about all that other rearranging he might have to do?? He was all 'I'll just flip this muscle sideways, then stretch this one over, then turn this part upside down, pull it to the right, to the left, up, down, left, right, take it out, put it in, flip-flop, flip-flop, flip!!!"

Aaaaaand this whole cancer still being in my body thing—Uncool. I try with all my heart not to think about it spreading. But I'm no magician. My brain goes where it wants to go. Sometimes where it wants to go is a dark and scary torture cell. It's not the brightest.

In the meantime, I've started Tamoxifen—a hormonal treatment that lowers my risk of recurrence. The side effects are fun. It's like going through menopause! In my case, that means hot flashes and mood swings. It's been a good time.

And Paul's wooziness? Not just a reaction to all this talk of slicing and dicing. Turns out his hemoglobin had dropped to 7.1 (normal range for men is 13.5-17.5) This did not come as a surprise—low hemoglobin is sort of Paul's thing. That and a killer White Chicken Chili. But White Chicken Chili doesn't make you short of breath. It doesn't make you so fatigued you can hardly move. We love White Chicken Chili. We don't love low hemoglobin. Quite frankly, it sucks.

Because of his low counts, Paul spent upwards of 7-8 hours getting a blood transfusion. Usually, these are accomplished with zero complications. He had complications.

First, his Mediport has been a finicky pain in the arse lately, and it flat-out refused to cooperate. Way to be a team player, Mediport.

Second, his temperature spiked during the transfusion, which nearly landed him a night in the hospital.

Third, his intestines are unhappy with things. (They're hard to please, though.)

But things aren't all bad.

After convalescing at the "Hall Bed & Breakfast" (AKA my dad & stepmom's digs) for a month, I'm finally ok to watch Ingrid solo and carry laundry upstairs. So we've moved back into our home in Buffalo—a step in the right direction. I wish I was able to express how thankful I am for their care and hospitality. (I mean, guys, we're talking Tim Horton's. Every morning.)

This was the SECOND time we've recovered at their place (also after Paul's surgery in 2014)—and I can say without reservation, if you need somewhere to recuperate, this is where you want to be doing it. To my dad and Linda Mary: thank you for housing us, feeding us, and enduring Trolls on repeat.