Annual Summer Blogging Challenge

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

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

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

2. How has your blog changed?

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

3. What is your biggest blogging challenge/frustration?

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

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

And my technical skills are pretty abysmal.

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

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

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

To become a better writer. To connect with people.

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

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

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

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

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

Encouragement from my readers. (Thank you!)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1. The Sexualization of Breast Cancer Awareness Month

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

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

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

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

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

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

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

2. The Commodification of Breast Cancer Awareness Month

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

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

This is where things get sleazy.

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

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

3. What About the Menz?

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

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

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

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

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

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

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

4. What About the Metastatic Peeps?

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

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

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

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

5. Fueling Misconceptions and Perpetuating Stigmas

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

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

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

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

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

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

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

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

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

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

What Can I Do About It?

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

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

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

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

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

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

How do YOU feel about "Pinktober"?

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

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

Appearance ≠ Health (so be nice to humans!)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love, 

Liz

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

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

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

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

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

This organization is the real deal. They are: 

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

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

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

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

I don’t know.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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