No Dress Rehearsal, This Is Our Life

Some awesome things that have been happening:

• I can wear mascara, finally. (I have a full set of eyelashes!) It�s always been my favorite, and I went 6 months without, so no -- I will not downplay my excitement.
• In case you didn�t hear, my second mastectomy was a success. Probably should�ve opened with this one, but gawrsh I love mascara.
• I am far enough along in my healing to wear a specially-fitted breast prosthetic. Which I realize is one of those things you might wish to leave out on a blog that�s read by your parents and maybe your high school teachers. It�s sort of like talking about a shopping spree at Victoria�s Secret: a cool thing, but a keep-to-yourself thing. But it�s also sort of exactly NOT like that. I have cancer. (cancer card! It�s happening!) I do (and write) what I want. Anyway, it�s great fun because when I go out, I no longer need to decide between the very unbecoming one-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. Doesn�t matter. 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 pulled through, 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 these stormy seas by a badass ARMY of the best folks on Earth. They�re doing all the doing.�

So, thank you. I feel pitiful saying that because it just seems...insufficient. Up against the multitude of ways people have helped us this year, my �thank yous� don�t really cut it. Like OK, here�s about half of the cards we�ve received since my diagnosis. Half.

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

I�ve learned that a plot-line featuring two young people with cancer, mounting medical debt, and a steady diet of spaghetti and Ragu -- this drives most people to rise up and shout, �not on my watch!�

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! We are so beyond grateful for the financial help. Now I can placate some of those persistent debt collectors ringing me six times a day (cheap, cancer ain�t). Hurrah!

I am profoundly touched by all this kindness. Profoundly. I know Paul is, too. Also, I�m so grateful for all of the positive and encouraging feedback I�ve received about this silly ol� blog. I am hyper-critical of everything I write, so when I hear a �good job, sport!� it makes my heart glow. Then I get right back to tearing my work apart. But my heart does glow, if ever so briefly.

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 2 times around (back in 2012 and again in 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 almost inconceivable amount of heartache?

So I kept these gross feelings to myself (and a couple of close souls). 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, almost instantly, the benefit. 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 encouragement, 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 that have been happening:

Paul has been very up and down with his symptoms. These days, more down than up. 

He has terrible stomach pains that leave him doubled over in bed. 

He's anemic. 
He throws up too much. 
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-looking, plummeting hemoglobin and all. 

Some items I can�t categorize into awesome/less than awesome things that have been happening:

Yesterday, Paul flew back to DC for a consultation at the NIH. They have a drug that has shown to be effective fighting peritoneal mesothelioma, 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 in the heck do you decide when to stop chasing risky treatments and just focus on symptom management? At what point do you opt for a shorter, more comfortable life over an excruciating, albeit extended, one? 

I don�t know. Our default mode is to claw at every last scrap of life, chasing after it with the ferocity of ravenous beasts. But what happens when all this grasping for existence leaves you with a half-asleep 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 that�s shading our current landscape. 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 an f***ing brain tumor last week. Death is sad whenever and however it happens, but right now cancer-related deaths strike a nerve with us. 

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 YOU Can Do About It

If the massive Pink Ribbon flags hanging from the streetlamps up and down Main Street didn�t clue you in, October is Breast Cancer Awareness Month.

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?

I�d rather not piss and moan about things. Negativity like kills my vibes, ya know? But still. I think this whole Breast Cancer Awareness rigmarole is something 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 entirely off-base here, but it seems to me that most people are already pretty aware of breast cancer�s existence and general sucky-ness. At least the people who seem to be the target of this rah rah go pink! cacophony are already quite 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.

Personally, I haven�t felt particularly affronted by the newly strung pink lights framing the consignment shops on Main Street. They�re kinda cozy.

I do, however, find most of the bedazzled pink chotsky being peddled by businesses in the name of �awareness� to be embarrassingly tacky. I would say that�s my immediate gut reaction to all of this: embarrassment. I don�t want to be associated with all that frivolous pink kitsch just because I have breast cancer. 

I also don�t appreciate the constant pink reminders that cruelly whisper, �eep, you�ve got CANCER, CANCER, CANCER� while I�m picking up supplies to make Halloween costumes. (Ironically enough, I was shopping for pink tulle. Which they were out of. Naturally, because everyone is pinking-out this month.) Gee, thanks. I wasn�t thinking about my breast cancer, but now I sure am. Most excellent.

One thing�s for certain. I am unquestionably against "No Bra Day," which was yesterday, October 13th. It baffles me to no end that this is a real event, that real people participate in.  I urge you to refrain from joining in on that wildly inappropriate spectacle. (not that you ever would because you�re a decent, respectable, sensitive human being.) 

I�ve already checked twitter, and the hashtag for the event yielded some barf-worthy content. I�ll  go one step further: it�s downright offensive content. There are so, so, so many things wrong with this approach to Breast Cancer Awareness. Like a LOT of things. Let�s take a look:

1. The Sexualization of Breast Cancer Awareness Month

One of the biggest beefs I have with Breast Cancer Awareness Month is its 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 what they deem a "youthful and artistically appealing" tagline: "I Love Boobies." Seriously. 

I get it-- adopting a playful, lighthearted tone to draw in the youngin's. You guys are really changing the world, one lewd t-shirt at a time.

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

Oh Liz, lighten up. These creative campaigns are meant to draw attention through humor! At least they�re raising awareness and some righteous dollar bills, yo!

No, they�re not. Not really. It takes an awful lot to offend me, but these ads make me pukey.

There�s got to be a better way to fund cancer research than to reduce women to a pair of breasts. Haven�t we evolved enough to see the problem with these juvenile tactics? 

First, these ads 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 boobies. Got it? As both of my surgeons made their roles perfectly clear from the very beginning of my treatment: we are, first and foremost, in the business of removing cancer. We want to save your life, not just your breasts. 

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 constant reminder that my body no longer fits the standard cast of feminine beauty. That is a hard enough concept to confront, without all the help from sexually-charged 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 major 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 cognisant 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, an anxious-looking nurse distractedly took my vitals and accessed my port. The lines on her forehead suggested worry, and when her phone rang in her pocket, she looked visibly ill. I told her: please don�t ignore a phone call on my account. 

�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 has to add injury to insult. Breast cancer is presented as a �woman�s� disease (it isn�t), so all this pink shite everywhere has to be extra humiliating for men with breast cancer. It must 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, both men and women.

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 I say, this is not enough.

5. Propagating 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 euphemisms such as �Hope. It�s powerful. It�s real. It�s all we got,� 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, entirely 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 2 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 less 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.

Whatta Ya Gonna 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 explicit posts that claim to raise 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.

This last one is pretty simple: just be a sensitive, kind, and thoughtful person. That goes for cancer patients, too.

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.

If we want to witness a true shift in the currently watered-down goals of Pinktober, we need to remain open-hearted, non-judgemental, and really listen to other people�s opinions. 

Which I will 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?

You Don't Have to LOOK Sick to BE Sick

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 so 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 place up front at The Shins concert last month. 

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, 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 preggos. 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. He looks healthier than me, but he usually feels worse than me. Outwardly, he looks fine, so people treat him as such.

As such means: impatiently. Rude, even. This makes my head hurt. I may sound like a defensive mother whose child is being bullied, 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.

So. Cool your jets and quit yer bellyaching. You impatient people, you!

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. 

The takeaway here is simple: Be kind, be kind, be kind. The world is starved for it. Even if it doesn't look like it is.


Photo by nikko macaspac on Unsplash