Patent pending
Posted: May 15, 2013 Filed under: breast cancer | Tags: BRACAnalysis, BRCA1, BRCA2, breast cancer in young women, gene patents, genetic risks and breast cancer, genetic sequencing, Myriad Genetics, Oncotype DX, Supreme Court 10 Comments
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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.
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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.
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Our newest spokesperson: Angelina Jolie
Posted: May 14, 2013 Filed under: breast cancer | Tags: Angelina Jolie, Angelina Jolie preventative mastectomy, BRAC1, BRCA, family history of breast cancer, Giuliana Rancic, Journeying Beyond Breast Cancer, The New York Times 11 CommentsThanks to my friend Marie at Journeying Beyond Breast Cancer for the heads-up on a noteworthy event in the breast cancer world: Angelina Jolie’s preventative bilateral mastectomy.
Yes, you read that right: Angelina Jolie had a preventative bilateral mastectomy. She spoke out on her choice in this New York Times piece. I’ve read it twice and know that I will return to it again and again. Not because she’s a celebrity (frankly, I don’t get our societal obsession with celebs; if anyone can find anything remotely interesting about Kim Kardashian besides her unfortunate maternity wardrobe, please drop me a line. I just don’t get it.).
But I digress.
I will likely return to Jolie’s article because she’s articulate and well-informed about this nasty beast called cancer. She’s proactive, which ladies and gentlemen is what makes or breaks your fight against this damned disease. She advocates for a person’s right to choose the medical care that’s right for them. True, she has money and resources unknown to most people, but her message still stands.
Normally when a celeb comes out with a revelation about cancer — particularly breast cancer — the world takes notice because it’s happening to a celebrity. We get all atwitter about the person rather than the disease and the many ways in which it affects them. It becomes about the celebrity instead of about the cancer. In the case of a celeb with breast cancer, I cringe along with my pink-ribbon sisters when that celeb boasts of having “caught it early” and even worse, waxes poetic about how exciting it is to get “new boobs.” (Exhibit A: Giuliana Rancic. I threw up in my mouth more than once while reading her account of her cancer experience and wonder if she really believes the crapola she shoveled.) Newsflash: “new” does not correlate to “better.”
Jolie writes of losing her mother to cancer at age 56, and how the disease stole from her own kids “the chance to know her and experience how loving and gracious she was.” I get that. My favorite girl was 3 when my mom died, and she has few real memories of her YaYa. There are plenty of stories that have been recounted to form memories, but nothing tangible. 
That, my friends, is a tragedy.
Jolie says she tried to explain to her children the disease that took “mommy’s mommy” and that they wondered if the same thing could happen to her. The scariest thing about my own diagnosis was explaining to my kids that YaYa’s cancer — which they watched her die from — was very different from my cancer.
But is it really?
Yes, the particulars are different — ovarian vs breast, stage II vs metastatic — but to a child, what’s the real difference here? It’s an amorphous, scary monster that snatches away the people they love.
Jolie says that “cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness.” The best way to combat that powerless feeling is to do something about it. Jolie underwent the BRCA analysis, which tells us if we carry a gene that makes us more likely to develop breast or ovarian cancer. Her results: an 87 percent chance of developing breast cancer, and a 50 percent chance of developing ovarian cancer.
She goes on to say, “On a personal note, I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.”
For someone in her business, and as someone who is celebrated for her body as much–if not more–than for her charity work, that’s big.
So is the empowerment Jolie speaks of: “For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.”
Make your own informed choices.
The majority of breast cancers occur in women with no family history of the disease. That’s one of the many ways this stealthy beast sneaks up on us and takes over our lives. People like Angelina Jolie are helping to change this. She says, “I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.”
Living under the shadow of cancer.
Those words will stay with me as I read and re-read her piece.
I expect Jolie to bring her considerable influence to addressing the fact that the cost of the BRCA test (upwards of $3,000) precludes many women from undergoing the test. The test is not always covered under insurance, and the insurance companies will squawk about it being unnecessary if there’s no family history of the diseases. But as Jolie says, that should not stop us from trying. Often it’s as simple as having the prescribing doctor contact the insurance company to assert the need for the test.
Jolie ends her article with this: “Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.”
Endurance
Posted: May 12, 2013 Filed under: breast cancer, cancer fatigue 10 CommentsHave you ever cried so much that your eyes seemed like they would fall right out of their sockets? Have you ever wept so much that every inhalation felt like you were sniffing ground-up glass? Have you ever bawled long enough that your eyes were tiny yet swollen slits and your lungs hurt every time air entered or exited them? Have you ever hurt so deeply and so completely that you seriously thought you’ll never recover? Have you ever wanted crawl into your bed right now, in the midst of this swirling inferno of misery, and never, ever get up?
Don’t call or text or ring the doorbell because there will be no answer. None.
At some point in this future I may find the strength to plaster on an insincere smile and reply “Fine” when asked the inevitable “How was your Mother’s Day?” But I won’t mean it. I won’t feel it.
I just won’t.
Don’t bother telling me I have so much to be grateful for. Don’t insult me by telling me to look on the bright side. Don’t waste my time pointing out all the good in my life.
Just don’t.
I can endure the long-distance slog that is facing a cancer diagnosis. I’ve never been one to deceive myself when reality stared me in the face.
I can handle hearing the worst possible news and do it with an inquisitive look on my face.
I can hear the worst-possible news with dignity and without falling apart (at least not in public).
I can face everyone’s worst nightmare without ever once whimpering, crying, or losing it.
I can digest the worst-case scenario with a straight back and a strong will.
I can formulate a Plan-B after Plan-A dissolves like the pages in a generations-old photo album, then start working on Plan C as soon as it becomes apparent that Plan B is hopeless, too.
I can dot every “i” and cross every “t” and still be shocked when there’s no pay-off for playing by the rules.
I can handle more stress than I ever before imagined, and I can get through more harrowing ordeals than I ever would have expected.
I can endure worse pain than that required to bring a new life into the world.
I can take it when I’m told again & again that no one anticipated the scenario that has become my reality.
I can suck it up and grit my teeth through repeated instances of “no one saw this coming.”
I can make it thorough the extreme mental challenges that follow a worst-case-scenario physical test.
I can serve as the poster child for “who in the hell has that kind of terrible bad luck?”
I can thrive amidst the “everything that could go wrong did go wrong” scene.
I can be the one that even the oddsmaker wouldn’t have predicted–and not in a big-winner way.
But pit me barefoot against a goat-head thorn and I may just crumble. Ask me to endure that sharp stick of brittle thorn into the tender flesh between my toes, and I may not make it.
That thorn may just do me in.
Rules? What rules?
Posted: May 8, 2013 Filed under: Uncategorized | Tags: ain't nobody got time for that, angry baby meme, Mike Hammer Allstate insurance, the rules don't apply to me, uninsured motorists 6 CommentsLast month I got rear-ended. Bummer.
It was a beautiful day, I had my family in the car with the top down; we had just come from signing the papers on our new house and were euphoric at the idea of building our “forever home.” The euphoria prevailed even as we hurried from the builder’s sales office back toward home to get my #1 son ready for baseball practice. As we were short on time, we decided to run through Chick Fil A to grab him some dinner before practice. As I idled next to oncoming traffic in the strip center, waiting to turn left into Chick Fil A, I saw a big pickup turning out of the grocery store parking area to get in line behind me. The driver of the truck must have taken her eyes off the road for a moment, because BAM! she hit me.
After the initial shock passed, we issued a collective groan at the interruption to our idyllic day. Mr #1 son fretted about whether his Chick Fil A was still on the table; fast food is a rarity in our lives, and that boy has a major soft spot for all junk foods. I handed him some cash and he walked across the parking lot to procure his feast while we exchanged information with the lady in the truck.
Her first reaction upon getting out of her truck was to announce that I didn’t have my turn signal on. I shut her down speedy quick: I most certainly did have my turn signal on (which she would know had she not taken her eyes off the road!), and it makes no matter because the person who hits another car from behind is at fault. Period. She piped down after that assertion and switched gears from combative to contrite.
She produced an insurance card and we copied down the details. As she pulled away from the scene of the crime, we took down her license plate number, just in case. While I certainly like to believe the best in people, even total strangers who ram the back of my car in a parking lot, you never know.
The “you never know” part took a starring role in this suburban drama. When I contacted her insurance company, I received the dreaded news: her policy is no longer valid. She’s uninsured.
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It gets better: I of course have uninsured motorists coverage on my policy, but there’s a $250 deductible, and it rubbed me the wrong way, big time, to have to pay money to cover someone else’s damage. Add to that the fact that we just bought a house, I mean literally, and the idea of spending money to cover some irresponsible bad driver just made me mad. My insurance agent, who is a rock star, assured me that we would find her and make this right.
You may have heard this about me — I have a whacked-out sense of justice. It irks me to no end when things don’t work the way they should; add to my list of annoyances: irresponsible people who drive around in a big-ass truck without insurance.
Did I mention that my rock-star insurance agent is named Mike Hammer? For real. In 1994 we chose him out of the phone book, way back when phone books were relevant, because of his name. All these years later, we likely could have found a better deal, maybe from that cute little gecko, but Mike has always given us top-notch service and I believe in loyalty (again, whacked-out sense of justice). I’m so glad we never strayed from Mike Hammer, because he put on his private-eye hat and found the lady who hit my car. With no valid insurance policy, her insurance company couldn’t track her down, and her license plate number didn’t come up in the system either. I’m not going to accuse her of having stolen plates, but in addition to letting her insurance lag, she must have let her car registration lag as well.
He called her up and told her that she must have mistakenly given me the wrong policy, because the information she provided is invalid. She assured him that she does indeed have insurance, and when he told her he’d gladly hold on while she went to get the real insurance card, she said she didn’t have it handy. He said no worries, I’ll hang on while you go out to the garage and get the card out of your glovebox. Cue the radio silence.
No need to hold on, Mike, because there is no valid card in the glovebox. Miss Missy in her big-ass truck has no insurance. Did she knowingly provide me with bogus information at the scene? Again, I’d like to believe the best in people, but she’s making it pretty tough.
She assured Mike Hammer that she would call him back with the correct policy information, and he said good deal, that’s a relief because my client sustained some significant damage and needs to get her car fixed.
I know y’all will be shocked to learn that Miss Missy has yet to call Mike Hammer with that information.
I did a little sleuthing myself and found out where Miss Missy lives. I’m sorely tempted to show up on her doorstep and demand restitution, but considering we do have the right to concealed handguns in the Great State of Texas, I’m going to refrain.
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Instead, I will go get an estimate on the damage to my car, call Mike Hammer with the amount, and let him call her again to ask when we can expect the cashier’s check for the damage.
Wouldn’t it just be so much easier if everyone followed the rules — the law, in this case — and carried valid auto insurance?
But apparently the rules — and the law — do not apply to Miss Missy, who has no problem driving around whacking other cars in her big-ass truck. Perhaps that’s a good thing, though: she should have plenty of money to pay for my car repair since she’s not spending one penny on car insurance or registration.
It’s been too long!
Posted: May 7, 2013 Filed under: Uncategorized | Tags: Goodwill, Houston real estate market, micro mini pig, moving house, pet pig, poppin tags, potbellied pig, selling our house 4 CommentsI’m finally back in my blogging chair, after 3 weeks of prep for selling our house. It’s been a busy, exhausting existence as I cleaned out closets, touched up paint, boxed things up, and whipped our house into “show palace” quality.
Pedey Dog is especially exhausted by all the pre-moving festivities
The house went on the market Friday, and we’ve had 8 showings and are entertaining 2 offers. Gotta love the red-hot real-estate market in the great state of Texas.
Please tell me the prospective buyers looked in this linen closet, which hasn’t been this tidy in years. 
Ditto the pantry, hall closet, and downstairs linen closet.
I defy any member of this household to say they can’t find what they’re looking for in here!
Closets this neat & orderly fill me with a crazy amount of happiness.
I’m tempted to leave the closet door open!
In the process of getting this place ready to sell, we’ve taken the age-old real-estate advice of “de-personalizing” the house: removing personal effects such as framed photos and the collection of assorted clobber that migrates under magnets on the refrigerator door. While I haven’t packed up every personal artifact, a lot of it is gone.
The former “gallery wall” has been cleared and is now part of a spacious, but boring, hallway.
The “after” picture is a lot less interesting.
When I shared this photo in celebration of my #1 son’s birthday last week, my friend Michelle texted me to say “Wow, your house looks empty!” and my friend Christy said, “I don’t think I’ve ever seen your kitchen desk totally cleared!” 
It’s true. I always have a basket on the corner of the desk full of papers, unopened mail, magazines I intend to read, etc etc. Somehow the pile in the basket would just grow taller as more things were added but the papers and mail sat undisturbed and the magazines grew dusty. Every once in a while I’d empty the whole basket in a frustrated purge, but the basket itself was a mainstay.
Not anymore. This house is still occupied, but the everyday detritus has been ruthlessly culled. Box after box of stuff we don’t need in the near future went out the door and into storage (thanks, Ed; aren’t you so glad you have a pickup truck and extra space??). Tons of stuff went to Goodwill, where shoppers will be “poppin tags” aplenty with the pile we donated.
I’m so glad this stuff is at Goodwill instead of in my office!
While I was aggressive in my culling, I did also try to forecast what we might need access to and at what point in this process. It’s rather like a triage; the stuff we definitely won’t need (holiday decor, specialty baking pans, and winter clothes, for instance) got boxed up first and were out the door. Stuff we may need between now and when the new house is ready at the end of the year went out the door as well, but is a bit more accessible. I’m not usually a big-picture thinker, but am trying hard to forecast what we need at the ready versus what can go into the deep recesses of storage. The one thing I did not account for was the crazy-cool weather we’ve been having. Field Day at my favorite girl’s school dawned with the temperature a mere 42 degrees — down-right cold for us thin-blooded Texans. She wanted to wear one of her cute hand-knitted scarves, and was a bit peeved at her overzealous mother when she learned that the winter accessories had been packed up and shipped out. How was I to know that Houston would have the coolest temps in the history of weather recording?
With the end of the school year approaching, our needs and our schedules will be much more flexible (and if we need a scarf at any point between now and the end of the year, I’ll take full responsibility for my short-sightedness). A big plastic bin of summer clothes, a few swimsuits, and a pair of flip-flops will suffice from June through August. But once school starts, we’ll still be a few months away from moving into the new house, so we will need a slightly bigger wardrobe, a more structured schedule, and the ability to find things when we need them.
It’s an adventure.
My favorite girl said she hopes the house sells fast, so she can go back to living like a slob. Both kids are sleeping on top of their comforters, rather than under the covers, so it’s easier to make their beds every day. I’m on constant patrol for any stray item not in its proper place or any rogue crumbs not wiped from the kitchen counters.
The one family member who has not yet been disturbed by the flurry of recent activity in and around the house is Piper. She’s thoroughly enjoyed her car rides when prospective buyers have come to look at the house. As long as her food bowl is filled twice a day, she doesn’t care what goes into a box or is moved to storage. 
Wordless Wednesday, part deux
Posted: April 10, 2013 Filed under: breast cancer | Tags: HAWMC, WEGO, WEGO Health, Wordless Wednesday. 12 CommentsDay 10 of WEGO’s Health Activist Writer’s Month Challenge tells me to post a favorite picture of myself. I don’t generally like pictures of myself because my eyes are huge and spaced far apart (which worked well for Jackie O but for regular people, not so much) and I always look a bit depraved in photos. However, in a rare showing of open-mindedness and willingness to play along, here ya go. In fact, I’m so open-minded and willing today (but only today, so get it while ya can), I’m posting not one but two pics of myself.
This one is my #1 son’s second birthday, in May 2001. We had a party at the neighborhood rec center and all went swimmingly until the mini fire truck we rented for the kids to ride in broke down and the dads who attended the party had to push the truck around the parking lot. Good times.
I chose this pic because at that time in my life, cancer was the farthest thing from my mind. I was much more focused on coordinating my and Trevor’s outfits to match the party theme. In a totally random aside, I found those toile pants I’m sporting in this photo when I cleaned out my closet last weekend, and they still fit. Barely. But I’m calling it a win.
Photo #2 was taken on my 36th birthday, before cancer so rudely interrupted my life. Again, I have the depraved look in my eye, and knowing myself the way I do, I can see an undercurrent of “hurry up and take the damn picture” and “Sweet baby Jesus I hate having my picture taken” but I love, love, love the proud look on Payton’s face as he wraps his arms around the two ladies in his life. My favorite girl has her usual impish look about her, and she was likely wise-cracking as Trevor took the picture.
Care for the caregivers
Posted: April 9, 2013 Filed under: breast cancer | Tags: advice for caregivers, HAWMC, help for caregivers, WEGO, WEGO Health 5 CommentsDay 9 of the Health Activist Writer’s Month Challenge is all about caregivers. Today’s prompt asks me, the patient, to give advice to the caregiver.
I have two pieces of advice. First, take care of yourself so that you can better care for your ailing loved one. It seems simple, but in the midst of all the caregiver’s duties, it’s easy for this to fall to the bottom of the list. 
Second, delegate! If you’re overwhelmed, ask for help (says the woman who’d rather open a vein than be dependent on someone else). People in your social circle want to help, and often are at a loss as to how they can help. Whatever task can lighten your load, delegate it. When someone says, “Let me know if you need anything,” speak up! 
vultures
Posted: April 8, 2013 Filed under: breast cancer | Tags: scary birds, vultures, WEGO HAWMC, WEGO Health 4 Comments
SaY wHaT???
Posted: April 7, 2013 Filed under: breast cancer | Tags: ain't nobody got time for that, Betty Ford, crazy cures for cancer, HAWMC, pinkwashing, soursop, stupid things people say to those with cancer, Susan G Komen for the Cure, Sweet Brown, WEGO 10 CommentsDay 7 of the WEGO Health Activists Writer’s Month Challenge (HAWMC). Has it really only been one week? Dang, this is harder than I expected. Today’s challenge is much easier than yesterday’s was, though: What’s the most ridiculous thing you’ve heard about health or your condition?
There have been many ridiculous things said and written and passed along about my “condition.” Thanks to Komen, breast cancer is commonly thought of as the “good” cancer, the “pretty” cancer. You know, the one wrapped in a girlie pink ribbon and represented by rosy-cheeked, full-breasted warrior-women crossing the finish line of the race that’s allegedly going to “cure” my “condition.” (In fairness, it’s also thanks to Komen that my “condition” is one I can blog about without shame or fear or offending someone by using the word “breast.” Betty Ford gets credit for that, too. I can like Komen for de-stigmatizing my “condition” but still shake my head at its idiot pinkwashing.)
One of my all-time favorite ridiculous things said about my conditions is “Well, it sucks about the cancer, but at least you get new boobs.”
Ahem.
I didn’t need new boobs. I was just fine with the set I had. The new ones? Notsomuch. Perhaps this ridiculous statement applies to women who fall into the average age of those diagnosed with breast cancer — mid-60s. If I were 20 years older, I may well think, Hmmm, these old girls have served me well, but it wouldn’t hurt to have a little renovation. But I’m not 20 years older, and I don’t think that. What I do think, though is this: I sure miss my old boobs. And this: Is it wrong for me to envy my pink-ribbon sisters who had the “easy” path of mastectomy to tissue expanders to implants, rather than the not-so-easy path of mastectomy to tissue expanders to several fills of said expanders to infection under the right expander to draining both expanders to removing both expanders to hospitalization for 28 days in one summer to multiple surgeries to extract dead tissue to wound specialists and a wound vac to daily home-health nurse visits to clean and dress that wound to an IV pole in my very own home for round-the-clock IV antibiotics to a year’s worth of oral antibiotics to a hellish reconstruction to two (so far) revisions to try to make that hellish reconstruction’s results palatable. Is that wrong?
Another ridiculous thing said about my condition: “Well, you look good.”
Sigh.
Too bad the general public doesn’t have x-ray vision. Not the kind that lets creepy guys peep under women’s clothing (although I do like the idea of a creepy guy having his retinas burned by peeping under my shirt!), but the kind that lets people see what a breast cancer patient looks like on the inside. Not so good. During the hey-dey of the worst of my BC “journey,” I may have slapped on some lip gloss and clawed through my closet for a top that would accommodate the many stages of my chest expansion. I may have smiled and said “I’m good” when asked how I’m doing in the midst of my own personal apocalypse. Maybe I looked good on the outside — a little sun on my cheeks is easy to achieve pretty much year-round in the great state of Texas. Maybe I portrayed a person who was faring well despite having both breasts removed — people do tend to see what they want to see, and I’m the queen of refusing to fly my vulnerability flag. Perhaps people just don’t know what to say. Either way, we cancerchicks may look good on the outside, but we feel like crap on the inside.
But the all-time most ridiculous thing ever said (to me) about my “condition” is this. Here’s the truth: if something as simple as eating a particular fruit or swallowing a particular supplement could cure cancer, it would. Period. End of story. Oncologists around the world would be out of work, infusion rooms and radiation centers would be rented out as party sites, and Big Pharma would go bankrupt.
If you’re tempted to share the latest internet craze for curing cancer with someone who’s actually dealing with cancer, let me quote Sweet Brown, my favorite meme:
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The Pink Underbelly 
I hope AJ has unplugged
Posted: May 17, 2013 | Author: pinkunderbelly | Filed under: breast cancer | Tags: Angelina Jolie, bilateral mastectomy, BRCA, breast cancer in young women, cancer in young women, criticism for mastectomy, genetic risk and breast cancer, negative comments to cancer patients, New York Times op-ed piece, prophylactic mastectomy | 16 CommentsThe 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.
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:
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:
“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.
“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.
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.
I wish there were a policy stating “If you haven’t had cancer, your voice will not be heard.” 
I 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.
I wish there were a mute button to be used when people spew garbage about a situation in which they know nothing.
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:
thank you, google images, for providing such lovely graphics.
sorry about the formatting; not sure what’s up with that.