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

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

The Peaks and Valleys of a Life with Cancer

This space could use a little jolt of happy, wouldn�t you agree?

I had my first post-op appointment with my surgical oncologist yesterday. Remind me to stop scheduling things in the afternoon. Waiting around all day 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?

I love my doctor. He�s the best. He�s brilliant. And sometimes brilliant people are�slightly scatterbrained? Or eccentric. So I forgive him for not launching into my pathology results the moment he walked in the door. 

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.

These are our days: ping-ponging from moments of dizzying rapture back to the unhappy reality of Paul�s worsening symptoms: feverish temps, stomach pain, vomiting.

Right before we had left for my appointment, Paul called his oncologist's office to fill them in on his condition. "Come in," they said. They needed to check him over. To rule out an infection or something worse.

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

I crawled 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 in this exact position?

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.

We Need To Be OK with Not Being OK

In case you were wondering, here are ten ordinary tasks that are impossibly hard to do after a mastectomy:

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

Things went fine on Monday. As fine as these things can go. No complications, unless you count a bout of nausea so severe it made me reach for the call light. I LOATHE using the call light, so yes, it was that bad. 

No skin grafts were necessary for the wound closure. Thrilling news! We are so, so pleased about that.

By Tuesday afternoon, I was home. 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 derri�re 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 has 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, robbing you blind and leaving you for dead.

I�d say, on an emotional level, I am coping less than perfectly. 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 echos repeatedly: �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. 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, 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 is my lopsidedness - there�s still an implant where my left breast used to be. I�m all for nixing both implants to achieve some balance. At this juncture, however, 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 less-than-terrific 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 Rainbow Sprinkles and Unicorns

Besides, I�m more than tired of these sparkly images of women jumping right back in the saddle after breast surgery. I�m tired of the trite Pinterest memes about �cancer-thriving� (yes, that is a commonly used term) and �feeling strong and beautiful in your skin� right after a mastectomy. It�s total 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 prayer) 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 deny our suffering in front of people? In front of ourselves, even? Why are we obsessed with being okay with NOT okay things? Why do we strive 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 corresponding morality nugget. Pain is more digestible when it's tastefully wrapped in hip kraft paper and sealed with a 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 don�t like it!

Poking around an Internet cancer support 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 less than hopeful circumstances.

One response barbed me. It read something like, �you just push through it - that�s all there is to it. Never let your husband see your doubt. You must stay optimistic at all times in front of him.�

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 view 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 do her husband good to witness the occasional cry, too. You can still be someone�s rock even if you�re sometimes sad about the hard things in your life.

It�s Okay to Not Be Okay

I�ve been both a caregiver to my husband and a cancer patient myself, 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 10 seconds when I took my bandages off this week.

I mean, it sucked big time 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 only response to my distress during chemo was a plucky, �You�ll get through it, honey. I believe in you!� It would have been kind of uncool if he was smiling in fake optimism while my breast surgeon explained that my mastectomy had resulted in �dirty margins� and I would be needing another surgery.

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. That only leaves others confused and worse - ashamed about their own ugly feelings. 

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. 

Photo courtesy of  Amen Clinics"Paper Smile" (CC BY-SA 2.0) 

A Summer Blogging Challenge: Coleman Edition

I�m a little late to the party, but a fellow breast cancer blogger, Nancy Stordahl, whom I admire greatly, proposed a summer blogging challenge last month. Though the grocery stores here in Western New York are stocked with Oktoberfest, and our temps are hovering right above sweater weather, the calendar agrees with me: it's still technically summer. 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 the 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�s 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!� It�s not. She wanted to make me feel better, 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!�

Liz: Really. Great time to push your self-righteous, delusional alternative medicine agenda on us. ugh.

Paul: 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. But then I guess it does make us more empathetic?

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. I pray. Prayer is a huge support. Without Faith I would find this much harder.

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???

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

I was not in a good way last week. This Monday didn't help (does it ever? What 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 is 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. Put on an episode of Game of Thrones and I see maybe 20%. The rest I mostly spend with my face covered, 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. And thank God they do.

I'll spare you the parts that had my head spinning. Basically, this is what's going down on Monday September 11th:

• My surgical oncologist will remove the implant in my right breast.

• He will 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 the next morning while I was getting dressed. 

                                      

• Here's where things get interesting: my plastic surgeon will have this massive hole to contend with, right. He can't leave me like that, right. 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 tummy 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 may be too thin to withstand radiation (which I will need.) It could end up as 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. We like options, normally. 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 like '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 taking Tamoxifen, an "anti-estrogen" pill that will help slow the growth of breast cancer cells. (My particular cancer feeds on estrogen.) The side effects are fun! It's like going through menopause! (hot flashes, mood swings, nausea, low libido...) Fun!

And Paul's wooziness? NOT just a reaction to all this talk of slicing and dicing. It turns out (surprise, surprise) his hemoglobin had dropped to 7.1. (the normal range for men is 13.5-17.5) Low hemoglobin is sort of his thing. That and making 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 two days ago at Roswell. Usually, these are accomplished with zero complications. He had complications. It's not been our week (year?)

First, his mediport has been a finicky pain in the arse lately. It refused to cooperate again, so the nurses had to give up and go with a vein. Way to be a team player, mediport.

Second, his temperature spiked during the transfusion, so Paul had to sweet talk himself out of a hospital stay. (It went back down by the time he came home, phew.)

Third, his intestines were feeling the pain yesterday. I don't think I need to elaborate on this point.

No more bad news. You get enough of that on TV.

After convalescing at the "Hall Bed & Breakfast" (AKA my dad & stepmom's digs) for almost a month, I am finally well enough to watch Ingrid solo and carry laundry upstairs. So we've moved back into our house 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.)

"A nap? Seriously, dad? Don't make me laugh."

This was the SECOND time we've recovered at their place (Paul's last 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.

Got that sunshine in my pocket...