The TMI saga continues

After blogging about Emma Keller’s article in The Guardian about Lisa Adams (read my thoughts here), I felt better. Reading the comments that came in response to that blog made me feel better still. But now I feel bad again. And mad. Really mad. As if Keller’s article wasn’t bad enough/mean enough/hateful enough/out-of-line enough, now her husband has gotten in on the hating.

That’s right, her husband.

He too is a writer, for The New York Times, no less. He joined the fray, I can only assume in an attempt to defend his wife, for whom the fallout has not been kind. His article misses the mark as much as his wife’s article did, IMHO, and he makes a really lame comparison as the basis for his point.

He compares the way Lisa has handled and is handling her cancer to the way his father-in-law succumbed to his cancer. Lisa is in her 40s with three boys to raise. Bill Keller’s father-in-law was a few weeks shy of 80. Can we really compare the situation of a still-young mother to that of a man nearly 40 years her senior, who also faced kidney disease, diabetes, and dementia? I think not.

Mr Keller chooses to break the same rule his wife broke; the one rule that should remain forever unbroken in talking about a cancer patient and how s/he chooses to handle that cancer: don’t judge.

Mr Keller judges, right alongside his wife.

For example, he writes that “every cancer need not be Verdun, a war of attrition waged regardless of the cost or the casualties.”

Like his wife, he wonders aloud, in his column, about the cost of Lisa’s treatment. Which is none. of. anyone’s. business. He even calls into question her partaking of Sloan-Kettering’s Caring Canines program, in which “patients get a playful cuddle iwth visiting dogs.” He whines about neither Lisa nor Sloan-Kettering not telling him how much “all this costs and whether it is covered by insurance.”

Really?? He begrudges a critically-ill woman’s choice to pet a dog and is pissy because he’s not privy to how much it’s costing her?

He characterizes his father-in-law’s choice to stop pursuing life-extending measures as “humane and honorable” and calm and enviable, while Lisa’s is the opposite, in which she is “constantly engaged in battlefield strategy with her medical team.”

Again, this is none.of. anyone’s.business.

Perhaps the worst part of Mr Keller’s piece is this: “Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly seems to peg patients like my father-in-law as failures.”

If Lisa Adams wants to be the standard-bearer for one-eyed-one-horned-flying-purple-people-eaters, it is none of Mr Keller’s damn business. If she wants to wave a flag, Braveheart-style, it is none of his concern. If she wants to depend on hope to endure the hell-on-Earth she’s currently living with, he is the last person who should be flapping his gums about it. If she considers herself a success for doing what she felt was best for her and her family in her particular situation, why would any of us take umbrage? Shame on both Kellers.


TMI?

I came across this article from The Guardian about whether cancer patients share too much information via social media outlets. The article centers around Lisa Adams, who is battling metastatic breast cancer.

Like many of us, Lisa started blogging and tweeting to communicate with her supporters and to connect with others on the same “journey.” Lots of us in cancerland do this; it’s a quick and easy way to broadcast the latest developments, it’s an avenue to connect with others in the same boat, it allows for the dissemination of vital information, and it’s therapeutic. The reasons for blogging and tweeting are as varied as the cancer patients themselves.  While we all face a dreaded disease, we do so differently: some of us confront the beast head-on while others close our eyes and wait for it to be over. Some of us share every gory detail while others keep it all inside. Some of us rant while others count our blessings. The one unwritten rule among us is simple: don’t judge. Don’t judge. What works for me may not work for you. It’s all good, just don’t judge.

The article in The Guardian about Lisa’s active social media life breaks that one rule. While the writer, Emma Keller, asks many valid questions about social media, she comes across as very judgmental. She tells us exactly how many times Lisa has tweeted in the past year (165,000) and even points out that Lisa tweeted more than 200 times in a 24-hour period. Why does it matter how many tweets Lisa has put out into the twitterverse? After regaling us with Lisa’s stats, Keller asks this: “Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?

Should there be boundaries in “this kind of experience????” The kind of “experience” Keller speaks of, aka cancer, certainly has no boundaries. Should we, a bunch of complete strangers, truly expect a young women with three young children to consider having boundaries while seriously and for real fighting for her life??? This is lunacy.

Keller continues: “[Lisa] is trying to create her own boundaries, flimsy as they might be. She’ll tell you all about her pain, for example, but precious little about her children or husband and what they are going through. She describes a fantastic set up at Sloan-Kettering, where she can order what she wants to eat at any time of day or night and get as much pain medication as she needs from a dedicated and compassionate ‘team’, but there is no mention of the cost. She’s living out loud online, but she wants her privacy in real life.”

Keller goes on to add: “You can put a ‘no visitors sign’ on the door of your hospital room, but you welcome the world into your orbit and describe every last Fentanyl patch.”

I wonder why Keller takes issue with the cost of Lisa’s treatment at Sloan-Kettering.  The scope of cancer treatments is enormous–doctor’s appointments, lab work, scans, X-rays, surgeries, follow-up appointments, repeat surgeries, hospitalizations, chemo, radiation, drug therapies, and lifelong prescriptions. Wondering what someone’s treatment costs is beyond the pale of social decorum.

As for the issue of TMI and the question of whether Lisa is “oversharing” I suggest this: reading tweets and blogs is purely optional, and one must subscribe to receive them. If you don’t like what your smart phone or tablet or computer is bringing you, opt out. Unsubscribe. De-friend. Unfollow. If you don’t want to read what cancer patients like Lisa offer up, it’s very simple: Don’t.

Just don’t.

But don’t judge. And don’t ask insulting questions, such as: “Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest? Will our memories be the ones she wants? What is the appeal of watching someone trying to stay alive?”

First-person accounts from the front lines of the war we wage on cancer are not reality TV. To equate the real-life struggles of life — and potential death — in cancerland with a guilty pleasure one becomes hooked on is insulting.

While I don’t know Lisa, I think it’s safe to say she’s not concerned with whether the twitterverse and twits like Keller remember her the way she wants them to. I betcha she’s much more concerned with the fine-line of managing her pain while still being lucid enough to enjoy her kids. My guess is she would tell you there is no “appeal” of watching someone trying to stay alive when you’re the one doing it. I assume she would gladly give up twitter and blogging today, this very second, if it meant she could go back to her old life. Her pre-cancer life. Her healthy life.

Shame on you, Emma Keller.

 


Twinnies

As if one case of breast cancer isn’t enough, how about two cases?

dailymail.co.uk

dailymail.co.uk

Identical twin sisters Kelly McCarthy and Kristen Maurer from Indiana share a lot of things — including breast cancer. The 34-year-old sisters saw first-hand how devastating cancer is when their mother died from colon cancer last year. Like so many struck by breast cancer, the sisters had no family history of the disease.

Apparently it’s not all that unusual, though, for identical twins to develop the same cancer, because they have the exact same genetic makeup. In addition, twins also have a mirror effect, with one twin getting cancer in one breast, and the other twin getting it in the other breast. McCarthy and Maurer were no different in this regard.

Their treatment was similarly influenced by each other: McCarthy was diagnosed first, with triple-negative breast cancer in her right breast, while 9 months pregnant. A week later, her baby was born, and shortly thereafter she started chemo & radiation, then had a mastectomy. Because of her sister’s diagnosis, Maurer got tested and found early-stage cancer in her left breast and had a bilateral mastectomy with tissue expanders and then implants.

McCarthy’s reconstruction was a bit different: instead of going the more common route of tissue expanders  to implant, she decided on a second mastectomy on the “unaffected” breast and flap reconstruction of both breasts. The problem was, she didn’t have enough fat & tissue to create two new breasts. I had a similar experience, sorta. Well, minus the identical twin sister, but sorta. I had extra fat before my DIEP reconstruction, aka The Big Dig, just not enough in my belly, the main harvesting site for DIEP surgery. Instead of having a twin sister donate her excess fat, I had to gain weight so that there would be enough excess in my belly. I went on the All-Butter-Lots-of-Cheese-Bottomless-Beer-Mug diet and packed on 12 pounds. Sadly, not all of it went to my belly (the rest I happen to be sitting upon as I type).

The worst part of the forced weight gain? No, it’s not the leftover junk in my trunk or the persistent craving for beer. It was the “Grab the Fat” game I had to play, more than once, with my plastic surgeons to determine whether my fat was fatty enough. Egads, I’d almost forgotten about the “Grab the Fat” game. I wrote about in this post,

“I thought I’d plumbed the depths of humiliation with the ‘grab the fat’ game we played more than once in preparation for reconstruction. In this game, the doc asked me to drop my drawers so he could grab my belly fat and determine if it was plump enough and plentiful enough to construct a new set of knockers. In a modified game of Twister, he had me sit, stand, and lean over to see just how much fat I had around my middle. Not once, but twice.

Humiliating doesn’t quite cover it.

But today, it was total humiliation, all humiliation all the time. I was basically splayed out like a deboned chicken on the exam table while he searched and plotted. Ladies and gents, just imagine your least favorite body parts being put under the microscope so to speak. Just consider for a moment being asked to stand up, sit down, and contort your body in the absolute least-flattering ways so that the softest, flabbiest, most-despised parts of your body are on full display. And then have those parts analyzed and calculated to determine just how fatty they are. We go to such lengths to de-emphasize these body parts, yet mine were being trotted out like the prize-winning hog at the state fair.”

McCarthy was fortunate enough to skip the “Grab the Fat” portion of the DIEP journey, but her sister probably endured it, because she donated her belly fat & tissue so that her twin could get reconstruction via DIEP surgery.  Maurer underwent abdominal surgery — not a tummy tuck, people, because there’s no free lunch in breast cancer  – to harvest the goods for her sister’s other breast.

How awesome is that??

Like most twins, McCarthy and Maurer share a close bond. But now, McCarthy said, “I feel closer. Her tissue is over my heart.”


But did it really save her life?

Amy Robach, an anchor on Good Morning America, underwent a bilateral mastectomy today because she was diagnosed with breast cancer following a live, on-air mammogram last month. She credits that mammogram with saving her life.

Robach is a 40-year-old  mother who lives an active, healthy lifestyle and has no family history of breast cancer. Her diagnosis came as a tremendous shock because she had no symptoms or reason to think she was anything other than the picture of health. She wants to fight her cancer as aggressively as possible. I know exactly how she feels. I too was 40 years old when I was diagnosed. My kids were 8 and 10. I lead an active, healthy lifestyle. I opted for a “scorched Earth” attack on my cancer.

I’m in no way challenging her decisions or judging her motivations, because hers are the same mine were. At the time I was diagnosed, my one and only goal was to rid my body of the cancer so that I could spare my kids the horror of watching their mom die before her time. I was willing to take the most aggressive road in exchange for a cancer-free life.

What I am challenging, however, is the rampant, panacea-esque assumption that routine mammograms save lives. Everyone loves a “feel good” story, and no cause stirs up quite as much “feel good” stuff as breast cancer. Wrapped in a pink ribbon, glitzed and glammed to high heaven and jacked-up as feminine and pretty, breast cancer is the cancer. All the cool celebrities are getting it, and everyone loves to hear that more “awareness” and more screenings mean more lives saved. We hear much of celebs being brave in the face of a breast cancer diagnosis, yet we learn little of whether their cancer warranted the treatment they chose.

While the “mammograms save lives” story makes people feel good and likely sells a whole lot of airtime, it’s not exactly true. But we want to believe it, despite scientific evidence telling us otherwise. While the evidence is sound, how many women opt out of a mammogram because they know that the routine screening has little to no impact on mortality? Conversely, how many women are diagnosed with relatively harmless breast cancer yet choose the most aggressive treatment? I know one such woman, for she is me. I am her. I knew my form of breast cancer was not terribly threatening, and I was provided all the stats & facts & figures and options to support that. Yet my gut instinct was to scorch that Earth.

A 2012 New England Journal of Medicine study looked into whether screening mammograms has had an impact on breast cancer mortality. After culling through 30 years of statistics, the conclusion: screening mammograms increase the cases of early-stage breast cancers that are detected, but that detection of advanced breast cancers has not changed.

Because the number of cases of advanced-stage breast cancer has not changed in 30 years of routine screenings, researchers concluded that mammograms are not successful in saving lives. Studies in the United Kingdom, the Netherlands, Italy, Switzerland, Norway, and Australia have come to the same conclusion.  One thing that has changed during the last 3 decades: increased diagnoses and surgeries.

This Nautilus article echoes the 2012 NEJM study. About Robach’s on-air mammo, author Amos Zeeburg says:

“The [Good Morning America] episode was presented as a triumph of medical science, an even more compelling push to get tested: Robach had no idea she was in grave danger, the screen had saved her life, and it might do the same for any woman watching. [Robach said] ‘If I got the mammogram on air, and if it saved one life, then it’s all worth it. It never occurred to me that life would be mine.’ It’s an inspiring conclusion, and it certainly makes for great TV, but the show’s lesson about screening mammograms is highly misleading. In a world of limited medical resources, it may even be harmful.”

So what’s a woman to do? Our doctors recommend a baseline mammogram annually starting at age 40. Celebs implore us to get our mammograms. Every October there’s enough “awareness” to scare the bejeezus out of a normally rational woman. Every time we turn around, someone else we know — in real life or from TV — is diagnosed with breast cancer, and everyone believes that early detection saves lives.

Nautilus author Zeeburg says: “The big problem with screening is that it tends to find cancers that are not very dangerous—’indolent’ ones that don’t grow quickly, will never metastasize to other organs, and might even go away on their own—while missing the truly deadly ones, which grow and spread too fast to get caught in any case. “

Noted breast cancer docs agree.

Dr Susan Love said, “I really don’t think we should be routinely screening women under 50. There’s no data showing it works.”

And for women younger than 50 who follow the rules and get a yearly mammogram, Dr Love says “It’s radiation without much benefit.” She notes that most European countries recommend screening every other year, and their breast cancer mortality rates are no higher than ours.

Dr Silvia Formenti, head of radiation oncology at NYU’s  Langone Medical Center said the emphasis on mammograms for everyone might have given the public the impression that screening could prevent cancer. “It’s a giant misconception,” she said. Furthermore, she’s not a fan of overtreating indolent cancers but worries about the diagnoses “turn them into cancer patients and erodes their peace of mind forever. We take away the innocence of being healthy and not having to worry about cancer. The psychological cost of becoming a cancer patient is underrated.”

Amen, sister.

But all these dissenting voices don’t clear up the question women face regarding mammograms. After my OB-GYN felt a teeny-tiny lump, she sent me for a diagnostic mammogram, which led to a couple of biopsies and then diagnosis. My cancer was determined to be indolent, yet I still chose the scorched-Earth option. Maybe I wouldn’t have reacted as surely and as strongly had I not watched my mom die of cancer and if I didn’t feel a gigantic, never-ending void in my life after she died. But how much does the constant barrage we receive about early detection saving lives contribute to such sure and strong decisions about our course of treatment? I went into my bilateral mastectomy eyes wide open and perhaps too well-informed about what I was getting myself into (absent the post-mastectomy infection that ended up being waaaaaay more perilous than the actual cancer). I went in feeling 100 percent certain about my decision. Yet now I wonder: what would have been the risk of just watching that teeny-tiny lump and seeing what, if anything, changed from year to year? How risky is it to live with a teeny-tiny lump of indolent breast cancer for years?

How many of us would be willing to play those odds if we weren’t barraged with messages about mammograms saving lives?

I don’t know the answer. I can’t say if I would have changed anything about my scorched-Earth policy; hindsight is perfect, after all. But I do wonder how much the “early detection” and “mammograms save lives” rhetoric contributes to the decisions we do make when facing down the pink beast.

I think Zeeburg says it best: “The surprising inefficiency of mammograms doesn’t mean they need to end, but that they should be reasonably evaluated, not treated as our divine shield against cancer, administered to everyone with breasts, and paired unquestioningly with the most aggressive treatments available.”


THIS is breast cancer awareness, people

This. the-scar-project

Not this. nfl-watch-nike-breast-cancer-awareness-week

This. emily

This is breast cancer awareness.

The SCAR Project is in town. My town. I went yesterday. What an experience.

I was dilly-dallying around about going and trying to convince myself that I am too busy to take time out of my jam-packed schedule. Truth is, I was a little nervous about going. I was nervous about  seeing the incredibly powerful images and then confronting the emotions they would inevitable bring to the surface. I’m 3 1/2 years out from my diagnosis, yet I know that at any given moment, cancer can upend my “new normal” and bring me to my knees.

I suspected that seeing The SCAR Project images, full-size and in person, would upend me and bring me to my knees. They did.

I’ve seen the images online and in my copy of The SCAR Project book, one of my most-treasured gifts (thank you, Trevor). The book is available on Amazon.com; click here to order your copy.

Seeing them in person, however, is a completely different experience.

The exhibit is housed in a small gallery in the heart of Houston. On my short walk to the gallery I passed this lovely shrine in someone’s front yard.20131023-155312.jpg

I certainly hope I didn’t offend by snapping a quick photo. I don’t see things like this in the ‘burbs where I live.

Nestled into a quaint neighborhood surrounded by bustling businesses, Gremillion & Co Fine Art, Inc., is spartanly understated. The lush greenery surrounding the modern-but-not-out-there building and the pieces of sculpture flanking the gallery speak to the idea of popping inside for a quick fill of art in the middle of the day. 20131023-155031.jpg

I gotta come back in the spring and see this wisteria in bloom.

20131023-155200.jpgSome of the sculptures surrounding the building.

20131023-155147.jpg

This gate leads into a little courtyard to the side of the gallery; a serene spot in the middle of the city. 20131023-155130.jpg

Enough stalling. Time to go inside.

There’s a sign on the gallery door that requests that visitors keep their conversations to a minimum and in a whisper because of the gripping, emotional response people have had to the photographs. While some not so intimately acquainted with the beast that is breast cancer might find this intriguing and perhaps even titillating, it did not have that effect on me. I felt certain my initial misgivings about witnessing the photos were true.

A small table filled with programs and copies of The SCAR Project book stands in the entrance. A cut-out window just behind revealed a man eating lunch, and I realized that man was David Jay, founder and photographer of The SCAR Project. I asked the docent if that was indeed him, and she nodded. I told her that I’m a survivor who greatly admires his work. She said, I thought you might be a survivor.

How did she know? What caused her to suspect? Perhaps the majority of visitors to the exhibit are. Or perhaps she read the fear and trepidation in my eyes. Either way, she smiled sympathetically and stepped away. Next thing I know, David Jay is standing right beside me, saying hello. Wow. I told him how much I admire his work and how grateful I am for him telling the real story. Not the “prettied-up, pink ribbon” story. He nodded and said, “That’s why the subtitle of this project is ‘Breast Cancer Is Not a Pink Ribbon.’” Amen, brother.

In the exhibit program, Jay is quoted as saying, “Still, through all of this, there is beauty. Soul. Courage. These are the things which cannot be taken away.”

Jay told me that he never envisioned working on this project, but that after a friend was diagnosed, the project was born. His mission: to show what breast cancer really looks like, especially in young women; to fundraise for research; and most importantly, to empower the women who have been affected and to hopefully allow them to see the beauty, strength, and resilience in the aftermath.

“For as long as I can remember, I have struggled with body-image issues. Losing my breasts and developing thick, red scars across my chest only made matters worse. I could not bear to look at myself in the mirror. I hope that being a part of The SCAR Project will help me to see something beautiful for a change. Maybe it will help me appreciate my body….It has, after all, created and sustained two new lives; it has fought cancer and won. It’s time I started giving it, and myself, much deserved respect.  Maybe if my scars were viewed as art, it would help me to heal.” — Gabrielle, age 30

“The most important part of being photographed was that it made me feel beautiful. It was an opportunity for me to stand tall and strong with my scars and redefine my beauty for myself.” — Emily, age 32

“My challenge has been and continues to be to accept the sorrow, focus on the joy, and remember to share both with the ones I love. Survival is about more than breasts: it is about courage, strength, and the many other attributes that make a woman beautiful.” — Jill F, age 28

Barbie, age 36, served 18 years in the U.S. military before being diagnosed with breast cancer. 1376917173_SCAR-12

In her SCAR Project bio, she says that “a weapon, a FLAK jacket, and a Kevlar helmet didn’t protect from THIS enemy.” She goes on to say that “I am not going to ever get over breast cancer or move past it. I will love with it for the rest of my life. Remission is not a cure.”

Not surprisingly, scars are a recurrent theme among the women featured. “My scars are powerful lines that point to hope, faith, and love.” — Candice, age 30

“Our scars are there to remind us of the times in our lives that are important to remember and they paint a story of not just survival, but of living.” — Eliza, age 22

Some of the quotes by the women featured are so sad, yet so true:

“Cancer does not discriminate; it doesn’t care who you are.” — Jessica D, age 22

1376917209_SCAR-16“An East-Indian girl, I was a mother to a toddler who fed from cancerous breasts for 20 months. A wife to a husband who left because he feared what my cancer would do to his life. A sister to a man who didn’t know what to say, so said nothing.” — Sona, age 36

20131023-155412.jpg“Cancer took so many things from me, but the one thing I may never get over losing is my sense of security. Blood work and tumor markers allow me to live my life in 18-month intervals, but cancer is an unpredictable beast.” — Toni, age 28

“I lost all of my hair, looked like ET, got my boob hacked off along with 9 lymph nodes, got zapped by so much radiation my skin burned and bled, and will need to cut open my stomach and relocate my fat and muscles to my chest. I think sometimes I am so good at putting on a pretty face and acting all put-together that people don’t realize the extent of everything that breast cancer survivors go through. My scars and words are only half the story. They don’t show the emotional and private struggles that are continuously present.” — Vanessa, age 25

Something else Vanessa said really resonated with me: “I’ve never wanted to be the center of attention, or to be regarded as ‘special’ or ‘brave.’ I don’t need to be pitied or felt sorry for. In life, there’s a beautiful balance of happiness and sadness, awareness and unawareness, acceptance and rejection, blessings and misfortunes. These dualities are the moments that define life.”

Not all of The SCAR Project women survived. David Jay tells the story of Jennifer, age 27, who could not travel to New York for her photo shoot because her cancer had spread to her liver. She wanted to do it, though, and asked Jay if his studio had wheelchair access because she could no longer walk up the stairs. Jay told her, “Just come, I’ll carry you up the stairs if I have to.” She never made it to New York.

Each of the women featured in The SCAR Project has an important story to tell. Each has experienced things that profoundly and permanently changed them. Each faced the terrifying reality of cancer at a young age.

This wall of images represents each woman’s story and each woman’s struggles. It is moving beyond words.  Not just for those of us diagnosed with the disease, but for all of us as human beings.20131023-155333.jpg

As I left the exhibit, I saw David Jay outside, on his cell phone. I waved to him as I walked past to my car. Pulling out of the garage, I thought, I should ask him to sign my program. But I didn’t want to interrupt his phone call. What to do? What to do? Interrupt him. Ask him.

So I did. 20131024-122627.jpg

For more information, go to http://www.thescarproject.org. Follow The SCAR Project on Facebook and Twitter (@thescarproject). Watch the Emmy-winning documentary Baring It All and purchase The SCAR Project book.


Bad Mommy

If this blog were my child, I’d be locked up in CPS jail for extreme neglect.

Like many negligent parents, I didn’t mean to treat my baby so badly. I intended to love it and care for it and sign it a sweet lullaby every night. Really, I did. But life got in the way. My blog baby made it pretty easy for me to put it at the very bottom of my priority list: it never complains, it never cries (as Lyle Lovett says in his classic song “Don’t Touch My Hat“).

lylelovett.com

lylelovett.com

I’ve sat down many times ready to show my baby some love. I had good intentions, but ….

Some good and juicy blog topics have come and gone while I’ve been neglectful. Komen grand poo-bah Nancy Brinker’s raise in pay. The untimely death of Angelina Jolie’s aunt from breast cancer. The Supreme Court rejecting Myriad Genetics’ bid to patent our genes. And my favorite story of late: my blog friend Scorchy’s triumphant tangle with Facebook over its asinine decision to censor photos from The SCAR Project and from Facebook users themselves post-mastectomy. Scorchy took umbrage with that dumb policy and ripped Facebook a new one. Way to go, Scorch! The power of the people has never been more apparent.

I had every intention of blogging about each and every one of these topics, plus a couple thrown my way by my friend M. I will get to those (I will, I will, I will!). Hopefully before CPS finds me and locks me up for being a bad, bad blog mommy.

bluntcard.com

bluntcard.com


Girls Love Mail

Throughout my long and arduous cancer “journey,” I was lucky enough to be on the receiving end of lots of mail. As much as I love email and texting for their speed and efficiency, there’s something just lovely about getting a piece of “real” mail. One friend in particular, a breast cancer survivor herself, sent me a card every week for a very long time, and seeing her familiar handwriting among the stack of junk mail made me smile every time (thanks, Jenny!). There were plenty of days in which that piece of mail was the highlight of an otherwise crummy day.

tumblr.com

tumblr.com

Imagine my joy when a commenter on this little blog alerted me to a wonderful effort for cancer patients called Girls Love Mail. Founded by fellow breast cancer survivor Gina Mulligan, GLM collects handwritten letters of encouragement and distributes them to new members of the pink ribbon club and those going through cancer treatment. It’s simple and brilliant: you write a note and mail it to GLM, where it goes into a special envelope and is passed on to someone whose day needs brightening.

I just sent my first two cards to GLM and signed up to send something every week. Check out the GLM website; there are sample letters and ideas on what to say. If you’re impatient like me and want to just get right to it, here’s the address: Girls Love Mail 2330 E. Bidwell Street, Suite 200
Folsom, California 95630. Drop a card or note in the mail; it’s such a simple thing but it has the power to make such a difference.


No easy choice

I have a friend I met through this little blog. Like I, she lives in a suburb of this vast, sprawling city, although we are on completely opposite ends of the city — an hour’s drive apart. In this city of more than 2 million people, we both had the same surgeon for our reconstruction. She found this little blog while researching our shared doc. Small world, huh?

M and I have gotten to know each other in short order, as is the case when strangers are bound by the worst-case scenario. Instead of discovering that we both like to hike or collect Troll dolls or any number of commonalities that bring people together to forge a friendship, we’ve bonded over things like post-surgery infections, failed surgeries, broken promises and shattered dreams. We’ve traded war stories, vented frustrations and showed each other our scars — the ones on the outside, that is; the ones that can be seen by others.

Our most recent conversation was about how our reconstructive surgeries didn’t exactly turn out the way we expected. We’ve covered this topic before, and will likely cover it again. This most recent conversation coincided with this article in The New York Times following Angelina Jolie’s announcement that she had a prophylactic mastectomy. While Jolie has received a lot of praise, the article says that some breast surgeons worry that the general public will think that reconstruction following a mastectomy is “a quick and easy procedure” and that most people don’t fully understand what’s really involved. I certainly didn’t. I do now. Man, oh man, I do now.

The Times article elaborates: “For most patients, breast reconstruction requires an extended series of operations and follow-up visits that can yield variable results. Some women experience so many complications that they just have the implants removed.” While not all reconstruction involves implants, as in the case with M and me, that’s the most common version, and as long as one doesn’t suffer complications like M and I did, it’s a straightforward process.

It is not, however, a boob job. Roseann Valletti was interviewed for The Times article, and reports that “she is uncomfortable. All the time. ‘It feels like I’m wrapped up in duct tape,’ said Mrs. Valletti, 54, of the persistent tightness in her chest that many women describe after breast reconstruction. They look terrific, to the eye, but it’s never going to feel like it’s not pulling or it’s not tight. It took me a while to accept that. This is the new normal.”

Ah, yes…the “new normal.” M and I have discussed this “new normal.” A lot. And we’ve both come to the conclusion that we don’t like it. Not one bit. We’re so over the “look on the bright side” mentality that is forced upon us cancer patients, especially those of us “lucky” enough to have “the good kind” of cancer. Newsflash, people: there is no good kind. There are degrees of shittiness, but none of them is good.

M and I have learned the hard way that reconstruction after a mastectomy is not a simple thing, as some people may have inferred from Jolie’s experience. As stated in The Times: “Even with the best plastic surgeon, breast reconstruction carries the risks of infection, bleeding, anesthesia complications, scarring and persistent pain in the back and shoulder. Implants can rupture or leak, and may need to be replaced. If tissue is transplanted to the breast from other parts of the body, there will be additional incisions that need to heal. If muscle is removed, long-term weakness may result. A syndrome called upper quarter dysfunction — its symptoms include pain, restricted immobility and impaired sensation and strength — has been reported in over half of breast cancer survivors and may be more frequent in those who undergo breast reconstruction, according to a 2012 study in the journal Cancer.”

Running through that check list, I can say yes to bleeding, infection (not just risk of, but full-blown), scarring, persistent pain, and additional incisions. No anesthesia complications, no implants (ruptured, leaky or otherwise), or upper quarter dysfunction, although I certainly do have all of the symptoms listed, so perhaps I do have it and just don’t know it. Add to that list less-than-satisfactory aesthetic results, intermittent lymphedema, frustratingly painful scar tissue, divots in both armpits from lymph-node removal, unholy difficulty finding a bra that fits, PTSD, a near-uncontrollable aversion to antibiotics, and discomfort when reaching or stretching my arms.

Dr Deanna Attai, a mainstay in the online breast cancer community, was interviewed for The Times article and said, “We do not yet have the ability to wave a wand over you and take out breast tissue and put in an implant — we’re not at “Star Trek” medicine.”

Rats. I like the idea of just waving a magic wand and getting “Star Trek” medicine. Although, if there were such a magic wand to be waved, I’d wish not for “Star Trek” medicine, but for never having had breast cancer in the first place.

doobybrain.com

doobybrain.com


I hope AJ has unplugged

The backlash surrounding Angelina Jolie’s announcement that she has a prophylactic bilateral mastectomy is a lot of things: stunning (not in the good way), discouraging, upsetting, disgusting, rage-inducing, sad…the list is long.shut-your-face

I keep telling myself to just stop reading the negative headlines and judgmental comments, but I can’t. I’m drawn to them like a thirsty girl to a sparkling glass of bubbly.

The comments range from stupid to mean to crazy. This crackpot goes way out on a limb with a conspiracy theory (thanks to my friend Katie for alerting all of us to this blood-pressure raiser). A couple of gems from Mike Adams, who calls himself the Health Ranger, but whom I’m calling Senor Crazy-Pants:

“The cancer industry wants to funnel women like cattle into their slash-poison-burn system of quack treatments. And Angelina Jolie is their new cheerleader. Scarred and no doubt experiencing the chest and armpit numbness that almost always accompanies mastectomy surgery, she now seeks to ‘inspire’ other women to exercise their own sick ‘choice’ and have their breasts removed, too!

“It is the sickest invocation of women’s power that I’ve ever witnessed. This is not empowering women, it’s marching them into self-mutilation. And the ‘risk’ is a complete fraud. In truth, Angelina Jolie had a higher risk of dying on the operating table than dying from breast cancer if she simply followed an anti-cancer lifestyle.”

According to Senor Crazy-Pants, we could avoid cancer with a healthy diet and lifestyle. So it’s my fault that I got cancer, even though I don’t eat meat, choose organic, strive for a plant-based diet, and avoid processed foods and environmental chemicals.

Unbelievable.

Other comments:

“She wanted a boob job so this is a convenient way of getting one PLUS accolades from everyone.” Yes, because a woman whose net worth is estimated to be $120 million can’t afford breast augmentation.

“This is no less than a media stunt to gain more market share to stay up high on the A list.” Right. As if her every move isn’t chronicled by papparazzi. Going to the grocery store is People-worthy news for her.

 “It’s not ‘brave’, it’s stupid. When one has a genetical risk of developing cancer, the procedure is to have them checked at least once a year, up to every six months. Removing healthy organs just for the hell of it is insane and the surgeon who accepted to do this is highly unprofessional.” It’s not enough to criticize and judge her so let’s drop her surgeon in the grease, too. And by the way, it’s “genetic risk” not “genetical risk.” Sheesh.
“How brave is she, if she did that [preventative mastectomy] out of fear?” I’ll give you something to fear, you dumbass commenter.
“Is she really trying to save herself from possible breast cancer or is she following orders from her Council on Foreign Relations bosses to have a ‘unisex’ look?” Sorry, but she already had reconstruction, so the unisex look theory died before it hit the mainstream media.
“Angie DID IT AGAIN…..she stole Poor Bitter Barren Spinster Jennifer Aniston’s marriage thunder RIGHT FROM UNDER HER…..” Ahhh, so that’s why she underwent 3 months of medical hell — to deflect publicity from her arch-nemesis. I’m just spit-balling here, but I’d say that her nearly 10-year relationship with Brad Pitt and their 6 children satisfies her need for vengeance.
“If anyone believes she did this as a way to prevent cancer you’re naive. She’s had 3 kids and she’s getting older. She needed a way to justify getting breast implants (since she’s against plastic surgery) and this is a way for her to do so. Nothing she ever does is for anything but selfish, self-promoting, and self-absorbed reasons.” Duh, she has 6 kids…get your celeb gossip facts straight. And how selfish, self-promoting and self-absorbed is it to be involved in 29 different charities and to donate millions of dollars to those causes.
I don’t care what doctors think are your ‘chances’ for getting cancer. She could’ve kept her tits and monitored the situation closely. The dumb bitch chose to mutilate herself. This woman needs a fucking lobotomy … and to all of you morons who will coo about how “brave” she is, you need lobotomies too. She’s not brave. She’s a stupid, attention-junkie whore.” Wow. Way to work in extreme judgement, disparaging ideals, quackery, and cuss words. I’m glad this commenter “doesn’t care what doctors think” because if he/she is chosen for the cancer lottery, he/she will already have all the answers.
“I can’t get past the thought that this is a level of self-mutilation that would appeal to her.” Self-mutilation and prophylactic bilateral mastectomy. Not exactly the same thing, but thanks for playing.
“Is this drastic action really the only option? This seems like a combo of Ange’s crazy, extreme self destructiveness. and love of attention. More great
publicity for the Jolie Pitts! Again, going to the grocery store provides tabloid fodder for days. She’s probably the last person soliciting publicity.

“RIP Angie’s boobs. You had options, dummy!” And what options would those be? Living in fear? Wondering if this year’s well-woman exam would turn up a lump? Hide under the bed and hope it all blows over? Who’s the dummy here?

“Angie cuts off her boobs, Brad’s gonna be f****** the nanny!” Yes, because nice boobs are the only reason a man would want to be intimate with a woman.

“What a waste of a bangin’ set of boobies.” The waste here is that this commenter is alive and breathing air while Angelina’s mother is dead from ovarian cancer.

“Angelina Jolie’s boobs have been removed…I’ll never smile again.” I’ll give this tweeter partial credit for being creative, but that’s it.

“Because you can never be too careful these days, with the cancer industry scaring women half to death at every opportunity. ‘My breasts might murder me!’ seems to be the slogan of many women these days, all of whom are victims of outrageous cancer industry propaganda and fear mongering.” Damn that cancer industry and its propaganda and fear mongering!

“Being an empowered woman doesn’t mean cutting off your breasts and aborting live babies — even though both of these things are often celebrated by delusional women’s groups. Being an empowered woman means protecting your health, your body and your womanhood by honoring and respecting your body, not maiming it.” Damn those delusional women’s groups. And I guess I missed the news story that Jolie had a late-term abortion as well as a mastectomy. Were they at the same time?? Did the “highly unprofessional” surgeon referred to in a previous comment perform the abortion, too?? Is that covered by insurance??

Good grief.i_love_the_sound_you_make_when_you_shut_up_biker_shirt

One of my fellow bloggers had a much more useful comment. When I read it, I copied it and pasted it, but forgot to attribute it, and now I can’t remember who wrote it. Apologies, ladies. If this is yours, please tell me so in the comments section so I can thank you properly. “There are no ‘good’ choices in such cases: only bad and worse ones. Making them in Jolie’s situation, when your own mom has died of cancer, is even harder.”

Truer words are seldom spoken (or typed). While I’m a proponent of freedom of speech in general, I wish there were a rule that prevented idiots and mean-spirited fools from spouting off on something with as much gravitas as Jolie’s decision. dont-be-so-quick-to-judge-you-just-never-know-when-you-might-find-yourself-walking-in-that-persons-shoesI wish there were a policy stating “If you haven’t had cancer, your voice will not be heard.” imgI wish there were an amendment upholding the right of those of us who’ve lost a beloved member of our tribe to speak about the pain and grief and unfillable hole left by that person’s death.bob-marley I wish there were a mute button to be used when people spew garbage about a situation in which they know nothing.shut-up-fool-001

I really wish that everyone who takes the time to render their judgement and register their opinion on a total stranger’s wrenching choice would read Jackie’s post on this heated topic:

“I have a message for people of the judgmental persuasion. Until you know what it’s like to hear the words ‘You have cancer,’ or to lose your mother or sister or daughter to it, you don’t get a vote. (Even then, you don’t get a vote; but you’re far less likely to want one.) Check the beam in your own eye, if you tend toward the Biblical. If you don’t, let me put it in language you’ll understand. Shut. The. Fuck. Up.”

stephanpastis.com

stephanpastis.com

 

thank you, google images, for providing such lovely graphics.

sorry about the formatting; not sure what’s up with that.


Patent pending

tumblr.com

tumblr.com

I got a phone call from Myriad Genetics the other day, in the middle of the day. I was hard at work and not pleased about being disturbed. I looked at the caller ID to ensure it wasn’t one of my kids’ schools calling to report a sudden onset of vomiting, saw that it was neither the elementary nor the middle school, and chose not to answer. I got back to work — in this case, carefully wrapping and packing my excessive collection of martini glasses, even though I’m not a martini drinker and have never caught on to the trendy flavored martinis. Why do I have all these glasses? When was the last time anyone in this house drank anything besides beer from a bottle or champagne from a flute? If I decide to ditch the martini glasses, do I still need to wrap each one before donating them? Why is this one glass so much bigger than the rest? Where did it come from, and why do I only have one this size?

See why I don’t have time to answer a call from Myriad Genetics?

Truth be told, I figured in the millisecond of conscious thought I devoted to that readout on the caller ID that someone from Myriad Genetics must be calling to collect on a medical bill from months ago. At this point in my cancer “journey,” I have had so many tests and receive so many bills from different labs, physician groups, and hospital management companies, I would need a manager to keep them all straight. In the early days of this “journey,” my health insurance company provided a patient advocate, who acted as my manager. When I received a bill I didn’t recognize, I could call her and she would do the leg work — both with my insurance company and with the vendor billing me — to determine what I really owed and why it wasn’t fully covered. I have a 3-ring binder that is stuffed full, I mean completely full, of copies of medical bills. That binder tells an evolutionary story about my cancer “journey” from the first days of diagnosis in which I set up carefully labeled dividers to contain each category of my cancer: notes from doctors’ appointments, research, copies of test results, and a motley assortment of insurance clobber. In the days of feeling good, I would carefully note at the top of a medical bill the details of that particular transaction: the date I paid it, or the contents of the conversation with the patient advocate. In the dark days of being sick, sick, sick from the post-mastectomy infection, the correspondence is shoved helter-skelter into the notebook, crumpled and noteless. These days, doctors’ appointments and test results are few and far between, which is a good thing since the binder is so full. There is no room in the inn. My choices are continue stuffing stuff into the overly full binder, or start a new one. I don’t like either option.

Back to Myriad Genetics.

I didn’t give the phone call another thought; my thoughts were quite consumed with the martini glass collection, and my brain is rather full with the ginormous list of tasks required when moving house. I didn’t think about Myriad Genetics or the genome testing involved in the cancer “journey” until the story broke about Angelina Jolie’s preventative mastectomy. In her eloquent New York Times article, Jolie mentions the costliness of the genome testing she underwent that detected her risk factor (in her case, an 87 percent chance) of developing breast cancer and that the cost is a barrier for many women. I remember taking the Oncotype test to expose the exact characteristics of my cancer. My breast surgeon ordered the test so that we could better determine exactly what we were dealing with and decide on the best treatment, yet my insurance company denied payment because they don’t cover genetic testing. I don’t recall the exact cost of the Oncotype, and I’ve already packed my overstuffed binder, but it was definitely several thousand dollars. However, the cost of the test was a pittance compared to the cost of the chemo that two oncologists recommended before I consulted a third, Oncotype results in hand, who said chemo wasn’t necessary and in fact, would cause more harm than good. That nasty post-mastectomy infection was the final nail in the proposed chemo’s coffin; the Oncotype cost some stacks but it saved my insurance company even more.

Which brings us back to Angelina Jolie and her subtle yet effective reference to the cost of such tests and the disparity between who can and cannot afford such tests. I also had the BRCA test that Jolie subtly yet effectively mentions, and remember thinking, wow — $3,000 for swishing Scope around in my mouth then spitting the minty saliva into a collection cup? And yet that $3,000 test determined that I do not carry the gene that predisposes me — and my daughter — to breast and ovarian cancers. Jolie’s BRCA test revealed that she does carry the gene, hence her preventative mastectomy.

Why does any of this matter? Well, beyond the age-old debate about the haves and the have-nots in health care, of course. That’s enough of a reason. Equally important,though, is the fact that Myriad Genetics has patented the BRCA1 and BRCA2 genes. They own the genes, essentially, which gives them a monopoly on testing. Therein lies the problem. With a monopoly, other scientists and other companies can’t get in on the gene testing, which shuts the door on any possibility of discovering better and less-expensive testing methods. While Myriad Genetics needs to make a buck, just like every other company, the stakes are high when we’re talking about shutting out many customers who may not know about their genetic risk of cancer until it’s too late.

policymic.com

policymic.com

 

The Los Angeles Times described the situation quite succinctly:

“At issue is whether a human gene sequence can be patented. That’s the broad question. The two specific sequences patented by Myriad — BRCA1 and BRCA2 — are genes that suppress tumors. A small percentage of women have defective copies of those genes, and they are extremely likely to develop a virulent form of breast cancer. They also face a higher-than-average risk of ovarian cancer. Myriad’s patents give it an unusual degree of control over researching and testing for BRCA defects. Only Myriad can legally isolate the BRCA1 and 2 sequences. In the United States, that means only Myriad’s lab can conduct a full sequencing test to check a patient for the innumerable possible mutations of those genes.”

Should Myriad Genetics be allowed to essentially own these genes? That’s up to the Supreme Court to decide. The ruling is expected next month, and the debate will likely be heated before, during, and after. I’ll keep ya posted.

slate.com

slate.com

 

 


Follow

Get every new post delivered to your Inbox.

Join 893 other followers