The Truth About Being Fearless With Cancer

Hate when people say "I'm not afraid of anything" cuz, like, have you seen things? They're terrifying.

� MehGyver (@AndrewNadeau0) August 23, 2017

Several months ago, one of my old high school teachers emailed me to ask if I�d consider sharing my story with her moms' church group. (And by old I mean �former.� That woman hasn�t aged a minute. She�s lovely.)Her group had been focusing on the topic of �fearlessness in the face of adversity,� and she thought I might have, I don�t know, some insight on the subject.

Which bwahahahaha omgggg nooooo. I am the opposite of fearless. I�m scared of at least 23 bajillion things. Also, I don�t do public-speaking. Not voluntarily. When I feel compelled to share something, I perch myself behind the comfortable security of a computer screen.

I could hear the fraud police sounding their sirens.

In a momentary lapse of judgement I wrote back, "Why yes, of course. I�d be happy to speak to your group." It took maybe four seconds after clicking �send� on my reply before the gravity of what I'd just done set in and I was like Dear. God. What. Have. I. DONE?!

via GIPHY

But I was stuck - no backing out. (In hindsight, I could�ve very easily backed out. Cancer card, remember? It came under consideration.)

So fearlessness, huh. What in the world could I say about fearlessness? 

When I sat down and tried to formulate some intelligent thoughts on the topic, I came up short. Like way short. In fact, this whole ordeal had a way of highlighting how terrifically un-brave I actually am.

One rule I have for myself when I write is to be honest. Unapologetically so. If I can�t tell the truth about something, I shouldn�t bother writing about it. So that�s what I did. I told the truth.

I stood in front of a bunch of moms who were hoping to hear encouraging words on how to be powerful and strong and brave and I told them sorry I�m none of those things no joke I�m afraid of seesaws even. (It then occurred to me that I probably shouldn't pursue a career in motivational speaking.)

But c�mon. It's not like cancer came along and tapped me over the head with its magical wand of fearlessness. I didn�t get diagnosed and then poof - holy crap I�m not afraid of death or spiders hiding in my shower anymore this is the best I am INVINCIBLE.

That, uh, didn�t happen. (If you know someone this did happen to, let�s talk. I�d really like to stop being afraid of spiders hiding in my shower. It is so inconvenient.)

What did happen was this - over the last several years, I�ve been presented repeatedly with situations and people and opportunities that have made the following abundantly clear:

I am so NOT ALONE in my suffering. Afraid, yes. Alone, no.

Sidebar: I haven�t alluded directly to my Catholic faith much on this blog. So let�s just get that out in the open. I�m a Catholic, hi. A practicing one, for what it's worth. I believe in God and I pray to Mary and the Saints and I was raised by parents who met their children�s tears with the pragmatic response of: �offer it up.� Moving on.

I can be massively dense sometimes, and I'm pretty sure God knows this about me, so He sends frequent reminders to say Listen up punk, I'm not gonna pull a fast one on ya. I�m not going anywhere.

He's all, "Liz, you insane little person you. I know you�re freaking out, but for Pete's sake, would you calm down for 5 bloody seconds?! I've got you. I'm with you. I can�t take away your suffering, but I can hold your hand through it." Which sounds like a pretty darn good premise for a country song. DON'T YOU DARE STEAL MY IDEA. (Also, I was on the fence about this entire paragraph because it sounds borderline blasphemous to invent ludicrous dialogue coming from God, but I'm also really lazy about editing so get over it already.)

When Cancer Struck (The 2nd Time), I Was Consumed By Fear

Three years ago, Paul�s cancer returned after two years of him being cancer-free. That was a dark time. I can�t speak for Paul, but for me, it was the darkest time of my entire life. Darker than being diagnosed myself.

Moments before our universe imploded in on itself, I was cradling my four-week-old daughter, enjoying the fact that she preferred to spend the bulk of her time sleeping, which lent me the freedom to pursue lofty endeavors. (Breaking Bad. I spent my entire maternity leave watching all five seasons of Breaking Bad. I live my life with no regrets.)

Just as I was about to see how Walt�s attempt to poison deranged drug lord Tuco Salamanca would play out (no regrets!) my phone rang.

It was Paul, and I could tell by his voice that he had been crying. Not the reaction you want to hear from your husband after what was supposed to be a routine checkup with his oncologist.

�Something came up on the scan,� he told me. And I was all �Um no it didn�t because we just had a baby and I�m not even remotely equipped for this and it will ruin everything and how am I supposed to enjoy Tuco being brought to justice if you�re sick again?!� And he was all �I married a lunatic.� And I was all �YOU KNEW WHAT YOU WERE GETTING INTO. DON�T CHANGE THE SUBJECT.�

None of this is fabricated.

Paul and Ingrid, 1-week before chemo. Taking it all in stride, as usual.

In a matter of weeks Paul would start chemo. But chemo wouldn't work.

Next, his surgeon would attempt a debulking operation. Strike two.

At that point, the alternative chemotherapies presented to us had somewhere around a 5-10% chance of working. Stats we weren�t keen to gamble Paul�s life with.

Fear consumed me. After Paul�s failed surgery, it hijacked the last shreds of hope I had held onto so tenuously during all those months of chemo. I remember thinking this was it. No way he survives this disease. 

I was devastated. And afraid. 

I was terrified of all the unknowns lurking in the shadows of the dim road before us. With Paul sick and out of work, how would I support my family when, at best, I had the emotional resilience of, say, a fragile teacup? A scared and timid teacup who gets overwhelmed to the point of paralysis when the grocery store is busy?

Cancer Didn't Make Me Fearless, But It DID Remind Me I'll Never Be Abandoned

Here�s how:

God wouldn�t cure Paul. He also wasn�t going to make me especially brave or even normal enough to go grocery shopping without an emergency Ativan in my purse.

Instead, He would answer our prayers by placing all of these wonderful people in our life who would literally keep us going.

People who would organize a massive fundraiser the month after Paul�s surgery so that we didn�t need to be afraid of not having enough money.

People who would babysit Ingrid so that I didn�t have to miss work while Paul was in the hospital.

People who would point us to experts in the mesothelioma field so that we could approach this disease with less fear and slightly more courage.

God had not abandoned us. Our community was proof of that.

"Do Not Worry About Your Life"

Two years later, the shock of my own cancer diagnosis would, unfortunately, send me back into a downward spiral of panic and despair. One sick spouse is more than most families can handle. How were we going to do this?

When fear attempts to hook its icy claws into me (a common occurrence lately) I like to recall the following passage from Matthew, which happened to be the Gospel reading just days before I started chemo:

�Therefore I tell you, do not worry about your life, what you will eat or drink, or about your body, what you will wear...look at the birds in the sky; they do not sow or reap, they gather nothing into barns, yet your Heavenly Father feeds them. Are not you more important than they? Can any of you by worrying add a single moment to your lifespan?...so do not worry and say �What are we to eat?� or �What are to drink?� or �what are we to wear?�...Your heavenly Father knows that you need them all. But seek first the kingdom of God and his righteousness, and all these things will be given you besides.� 

-Matt 6:25-34

I mean even if you�re not particularly Churchy, those are some beautiful words. Beautiful enough to plunk them here for the SECOND time on this blog. (But who's paying attention?)

When The Storm Hits, Cling To The Cross

Growing up, my mom had this huge painting displayed in our dining room. It featured a woman marooned on a perilous bit of earth during a flood, and I always thought it was COMPLETELY HORRIFYING. Please note the outstretched limb of a drowning person in the foreground.

Now before you get all �Catholics are CooCoo for Cocoa Puffs� on me, let me point out what an effective visual reminder this image is. It's hugely compelling. It certainly commands your attention. Particularly if you�re an easily frightened 8-year-old who cries when your mom is 5 minutes late picking you up from dance class (fragile teacup, remember?)

Early on in my treatment, my mom gifted me a smaller copy of this picture saying, �I don�t know if you like this painting, and you totally don�t have to hang it up in your house if you think it�s awful. You won�t hurt my feelings.� 

And, really, it was so perfect. (Thanks, mom.)

Because in our weakest, most desperate moments where we can�t see the light through the storm, what can we do except cling to Christ?

Welp, Okaaaaay. I can think of a few other unsavory things we might turn to in our bleakest moments. I'd be breaking my own  "write-with-honesty" rule if I failed to admit I've nursed my fair share of cheap wine bottles in (way too many) attempts to soften the edges of my suffering. 

In the end, though, that approach led to more searing headaches than anything like clarity or acceptance. 

I can�t make sense of our suffering, or the suffering of our broken world. It defies explanation. I can�t make my husband un-sick, I can�t tell my daughter she�ll always have her daddy around or that my cancer won�t ever return. At times, things become so bleak that I can�t see through the storm. This is when I need to cling to Christ until the darkness passes and the waters become still again.

Christ tells his disciples, �I will not leave you as orphans. I will come to you.� (John 14:18) One pretty rad promise, if you ask me. He loves you so much, and he is NOT going to abandon you.

You will still suffer (that's the thing about Catholics, they're all about this thing called "redemptive suffering".) And, sorry, you�ll still experience fear. That doesn't really go away.

But in all of your hurt and through all of your anxieties - you�ll never, ever, ever be alone. 

Because life isn't meant to be a one-man show.

xoxo, Liz

unsure of what I'm clasping in my ring finger, but HEY I'm a mom and moms always have garbage in their hands when they take family selfies

"Because Light Strikes A Deal With Each Coming Night"

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

Anyway, Pandora Radio sometimes thinks it's a fun time to casually throw a tune into my queue that will completely destroy me. This is my attempt at paying it forward. Enjoy the cathartic cry!

Each Coming Night by Iron & Wine

 Will you say when I'm gone away:

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

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

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

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

I'll Follow You Into The Dark

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

Acceptance is a small, quiet room." 

- Cheryl Strayed, Author of Wild

At this point, most of you have probably seen the latest update on Paul circulating through your Facebook news feeds. For everyone else, here's the scoop:

In my last post, I mentioned that 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 back to Buffalo.

So the three of us are staying in Paul�s parents' home in Oshkosh, Wisconsin where he has entered Hospice care.

We had always considered making Paul�s childhood home in Oshkosh his final resting place on this Earth. After witnessing 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 was able to travel 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 tending to. So I boarded my return flight solo, the empty seats on either side of me serving as stinging reminders of the rotten week ahead of me. 

Originally, we had planned on heading to Orlando after our Wisconsin trip. But instead of scoring autographs from Elsa and Anna in Disney World, I would be spending that week selecting tasteful memorial cards and scouting out prime burial plots. 

Which: have you ever done that? Shopped for burial plots, I mean. I�m sure some of you have. 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. This may sound dramatic, but as someone who weeps while putting baby clothes in storage, well, you can see how problematic 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 daily prayers being offered up from so many faithful friends. That or my meds are triggering some majorly choppy mood swings. Hard to say. We�ll go with prayers.

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

Stumbling, But Still Kickin�

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 excruciating 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 backwards, 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 not yet recovered. 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.�

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 and further away from them.

I�m pretty depleted emotionally these days, so you�ll forgive me if I can�t bring myself to write more regularly. Also, my laptop bit the dust so I�m typing this on an iPad, which I very much do not enjoy. Once I replace my computer and achieve some semblance of emotional stability (ha. ha. ha.) I�ll be back at it.

Gonna Put The World Away For A Minute

Not to brag, but when I married Paul I totally cashed in on the familial lottery. I gained seven delightful siblings (and their equally wonderful spouses and kids). Paul's parents aren't too shabby, either (joking! They're incredible and I love them.)

My mother and father-in-law are so lovely and so generous, in fact, that they organized a Coleman vacation in Florida a few weeks ago. Most of us live in places with rough 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 where it's at. 

Rockin' the pineapple print with plaid. Paul - you, sir, are a legend.

"Smile for the camera, Ingrid!"

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

 

It's My "Cancerversary" - I Welcome Cake, Smiles, And Good Cheer

�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 sufferer, 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? Nobody. I�m guessing.

I don�t normally get caught up in dates or anniversaries (�cancerversary� as 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? Can I use the past tense yet?) CANCER. It doesn�t compute. It�s too bizzaro. Until I look down at my chest and then I�m like �Oh, right. THAT happened.�

Getting diagnosed with cancer was lousy.

The two weeks following my diagnosis were lousy X a billion.

Cancer is one thing. But it�s all the unanswered questions that come after a diagnosis that will turn you into a sleepless zombie at 3 AM. Questions like: �What stage am I?� and �Did it spread?� and �Am I going to go bankrupt?� and �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 I NEED THEM OR MY BRAIN AND HEART WILL EXPLODE FROM ALL OF THESE WORST-CASE SCENARIOS PLAYING OUT IN HEAD PLEASE THANKS.�

The last year looked something like this: 

• 16 rounds of chemo 
• 1 ER visit, following a freak reaction to my meds (in hindsight, kind of a funny story. I�ll tell it to you, sometime.) 
• 2 mastectomy operations (because one is never enough) 
• 2 implants in. 1 implant out. 
• Physical therapy to prevent lymphedema (I�d rather skip the compression sleeve if I can help it.) 
• 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. A lot 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: you know what? 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 the top contender.

I know in my last post I said he wasn�t optimistic about future treatments. But after discussing things with his oncologist, 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 2 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

After she took my vitals the other day, my radiation nurse popped her head back into the examining room.

�Hey, I meant to ask - how�s your husband doing?�

�Oh, he�s ok. Well. No. Actually�� I paused, not sure how to finish that sentence. I mean - how do you casually insert the fact that your husband is dying into a quick conversation?

I stumbled through the key points: 

• He stopped taking the chemo pill he was on. 
• He may not pursue additional 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 even 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 Paul to order up his preferred cocktail of A- blood. Blood transfusions are an all-day event, so we passed the time by discussing fun topics such as: which photograph should we 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. It�s a topic Paul and I have discussed a lot, but one we�ve never raised with any of his doctors. 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 kind, 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. You know how people say �my doc gave me 10 months, but I beat the odds and here I am 8 years later.� Paul HAS beat the odds, but those odds are numbers we scooped off the Internet.

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 with his Grateful Dead t-shirts and his �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 that 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, my own palliative care doctor put us in touch with an end-of-life wish-granting organization. I gave the forms to Paul�s oncologist who happily completed them. Afterwards, as I was filling out our end of the paperwork, I scanned what she had written in the space following �Patient�s Life Expectancy:� 6-12 months.


6-12 months.

It�s possible she had written those numbers with the hopes of securing a Disney vacation for our family. But I don�t think they�re 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 about how I can�t make the drive home from radiation 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