Oh, Komen. Komen, Komen, Komen. Why’d you have to lie?
There might have been a chance — a teensy, weensy chance — that you could have come out of this firestorm with a speck of dignity and integrity left, but you blew it. Big time.
Well, the good thing about Komen’s decision to kick Planned Parenthood to the curb — and to bold-faced lie about the reasons behind that decision — is that we bloggers will have fodder for days. Thanks, Komen. Thanks for being sneaky and deceitful and for showing your true colors. If I weren’t so sad by the fracas and the potential to help so many that has been so foolishly pissed away, I might be grateful. But I’m not grateful. Even though it’s nice to have a definitive answer on this organization’s true motive, and it’s nice to know for sure that Komen is not what it claims to be, I’m not grateful. I’m mad. And anyone who knows me will tell you that once I get mad, I stay mad. For a long time.
As I mentioned in yesterday’s post, I sure wish Komen would have just been honest about its motivations to drop PP in the grease. The fact that Komen continues to hide behind the travesty of an ongoing “investigation” instead of coming clean about its reason for breaking with PP sickens me. Komen founder and chief executive Nancy Brinker continued the lie in a news conference yesterday, saying that SGK’s decision to pull its funds from PP has nothing to do with politics or abortion.
Here’s the thing — I don’t care if Komen wants to pull its funds from PP. I disagree with the wisdom of that decision, but Komen certainly has the right to do what it wants with its money. But don’t lie to me.
For Brinker, and by extension SGK, to continue to say that the decision to pull out of PP resulted from changes to the grant-making procedure makes me sick. She said in her press conference, “We think this is the right thing to do from a stewardship standpoint.”
Maybe Brinker thinks the general public is too dumb to see right through this. Sorry, Brinker, but I’m not stalled by your rhetoric, by your multi-syllabic alliteration.
I’m also onto the fact that Brinker’s assertion directly conflicts with SGK board member John Raffaelli, who spoke about this ugly issue to The New York Times and said, and I quote, that SGK made changes to that grant-making policy specifically to end its relationship with Planned Parenthood. From The Times:
“Raffaelli said that Komen had become increasingly worried that an investigation of Planned Parenthood by Representative Cliff Stearns, Republican of Florida, would damage Komen’s credibility with donors.”
Guess what, Nancy Brinker: you didn’t need to worry one bit about Stearns’s trumped-up, bogus witch-hunt of an “investigation” damaging Komen’s credibility with donors. YOU DID THAT ALL BY YOURSELF.
Really, wouldn’t it have been easier to come clean? To be honest? To tell the truth, which is that Brinker and SGK no longer wanted a business relationship with PP because of a difference in political views? To that end, can someone please explain to me how not one word has been uttered by SGK about its 5-year, $7.5 million research grant to Penn State’s Milton S. Hershey Medical Center? Last I heard, the sexual-assault scandal at Penn State involving Scumbag of the Year Jerry Sandusky involved a federal investigation of the university. How can 40 counts of sexual abuse over a 15-year period be ok, while a mere 3 percent of PP’s services being dedicated to terminating unwanted pregnancy is worthy of an epic break-up? The hypocrisy is staggering.
Also staggering is news that local Komen affiliates were not told of the break with PP. Betsy Kamin, president of Susan G. Komen for the Cure Houston, told The Houston Chronicle “The affiliates were not made aware of it [the decision] in advance, so it was shocking to us.”
The local Planned Parenthood president and CEO Peter Durkin had something to say about the decision, too: “As a leading health care provider in our community, Planned Parenthood is trusted to help women identify breast cancer early. We are deeply alarmed that the Susan G. Komen for the Cure Foundation appears to have succumbed to political pressure from a vocal minority.” He went on to say that the Gulf Coast Planned Parenthood was “deeply disappointed” with Komen’s decision.
He’s not alone.
Mollie Williams, SGK’s top health official, resigned from SGK over this. Williams, the director of community health programs for SGK and in charge of deciding how to allocate $93 million in Komen grants to more than 2,000 community-health organizations said, “I have dedicated my career to fighting for the rights of the marginalized and underserved,” she wrote. “And I believe it would be a mistake for any organization to bow to political pressure and compromise its mission.” So the person in charge of handing out Komen’s money–who definitively knows who is worthy of receiving those funds–disagrees strongly enough with the decision to end the relationship with PP. Not just that, she disagrees strongly enough to quit her job. Wow.
According to The New York Times, Dr Kathy Plesser, a New York City radiologist and member of Komen’s scientific advisory board, said she would resign if Komen did not reverse its decision. “I strongly believe women need access to care, particularly underserved women,” Dr Plesser said. “My understanding is that by eliminating this funding, it will jeopardize the women served by Planned Parenthood in terms of breast care.” Dr Plesser went on to say, “Komen is a wonderful organization and does tremendous things for women, but this is straying from their mission, and it’s sad.”
The Race for the Cure, which is SGK’s most iconic fundraiser, is on the endangered species list. The very first Race for the Cure was in 1983 in Dallas with 800 participants. Last year, there were 130 races worldwide with 1.6 million participants, according to Komen’s website.
The Philadelphia Inquirer interviewed Kivi Leroux Miller, a North Carolina-based consultant on nonprofit marketing strategies, who said Komen was “naive” to think it could distance itself from the abortion debate while doing the very thing that antiabortion Senate Republicans have been trying to do – defund Planned Parenthood. Naive and egotistical, IMHO.
“Komen has forever changed the way people will look at them,” Miller said. “Until now, they have successfully stayed out of controversial areas of women’s health care. They kept the message simple: save lives, race for the cure, pink ribbons. They’ve forever muddied that now. They’ve made it hard for women to figure out what they’re about – and that makes it harder to raise money.”
I know one Race for the Cure participant who won’t be forking out $40 to enter Houston’s 2012 race. That makes me sad, because last year’s race was a lot of fun. And if any of my crew plans to participate in an upcoming Race for the Cure (should there be any), don’t bother writing my name on the “In Celebration Of” pink sheet. Thanks but no thanks. I don’t need Komen to help me celebrate my survivorhood.
Komen’s decision has taken center stage — in the news, on the Web, in the blog-o-sphere, and in the twitterverse. It was front-page news in my newspaper today, and probably in those of every other major city. The Seattle Times features a great story today about a formerly dedicated Komen fundraiser, Celeste McDonell. A Seattle lawyer and breast cancer survivor, McDonell labels herself as a “longtime, passionate Komen advocate.” She’s raised serious funds for the cause, too, by spearheading a “Row for the Cure” event that in 10 years has raised more than half a million dollars for her local Komen affiliate. Last year alone she raised $84,000 in her event. McDonell’s law firm had just committed to sponsor the next “Row” fundraiser, but has put that on hold, she said. Instead, a commitment has been made to Planned Parenthood. “Our firm is a strong believer in social justice and thought this was a move that needed to be made,” McDonell said.
McDonell’s story is but one in a crowded field of former supporters who are now protesting Komen’s decision.
The American Association of University Women has cancelled plans to offer a Komen Race for the Cure as one of the activities at its upcoming National Conference for College Women Student Leaders (NCCWSL). Stating that the AAUW is “disappointed with the Susan G. Komen Foundation’s decision to strip funding for cancer screenings from Planned Parenthood,” the AAUW will not offer the Susan G. Komen Global Race for the Cure as a community service opportunity at its NCCWSL. For 27 years, college women from across the nation have attended the NCCWSL, but this year there will be no Race for the Cure.
Oh Komen. Komen, Komen, Komen.
You sure stepped in it this time.
I can understand the pressure. I can understand being torn. I can understand the desire to do the right thing (yet missing so spectacularly). But I can’t understand the dishonesty. I can’t fathom why SGK didn’t just say that after 5 years of partnership with PP, we’ve decided to go in a different direction. I can’t wrap my head around why Komen had to lie to me.
My fair city hosts the largest Race for the Cure in the country. Yep, that’s right — everything’s bigger in Texas!! Today’s race was pretty great. They say a picture is worth 1,000 words, so I will simply let the photos speak for themselves.
She didn’t have any hair, but she did have tissue expanders in preparation for implants!
Race route sign. The logistics and details of pulling this huge race off are staggering.
How utterly sweet is this?
The best part of the race — finishing in the SURVIVORS lane!
I’ve been quite busy the last few days living my life.
I’m going to say that again — living my life. Those are 3 beautiful little words to someone dealing with cancer. Past or present, once you’ve tangled with the beast, the idea of living, i.e., surviving, is sweet. The idea of living your life, even sweeter because it means that in some way, you are getting back a semblance of the pre-cancer life.
It’s almost October, which brings a multitude of conflicting emotions and thoughts. National Breast Cancer Awareness Month is confusing for me, and for many other cancerchicks. On one hand, I’m grateful to Komen for destigmatizing what once was a shameful disease. I’m thankful for the research and the advances that have been made, which allow women like me to deal with BC much more easily than my pink ribbon sisters before me. On the other hand, I’m uncomfortable with all the pinkwashing that occurs. At what point can we declare enough with the awareness? Is there really anyone who’s not aware that BC exists and rips people’s lives apart to the tune of 1.3 million worldwide every year? More on that later.
While I’m torn about the Komen issue, I decided last-minute to do the Race for the Cure, which is tomorrow. The Houston version of the race usually attracts nearly 40,000 people so it’s a big deal, literally. I’ll be among the sea of pink tomorrow morning, wishing that the organization putting on the race would focus more on research and metastatic disease and less on putting a pink ribbon on products from fried chicken to dog treats to toilet paper. I’ll proudly wear my hot pink SURVIVOR shirt, basking in the glow of having made it through the plethora of crap cancer threw at me, but I’ll also mourn those who didn’t make it through.
But that’s tomorrow. Today I’m going to be kicking some butt on the tennis court. It’s the annual member-guest tournament at our club, and Christy and I plan to dominate. She’s a fierce competitor who wants to bring home the hardware. Me too, but I’m also happy to be living my life.
If you’re still searching for the exact perfect gift for my upcoming birthday, here’s a tip: don’t buy this.
It seems the marketing machine at Komen is looking to get a little more mileage from CEO Nancy Brinker’s book by cross-promoting a Promise Me perfume. Thanks to my blog friend Katie at Uneasy Pink for bringing this to my attention.
The more I learn about the Komen organization, the more I resent the “for the Cure” part of its name. IMHO we pink-ribbon girls do owe a debt of gratitude for the de-shaming of our disease compliments of Komen, but I don’t yet see what the organization is doing “to end breast cancer forever,” as it says in its mission statement.
We all know the story: Nancy Goodman Brinker promised her dying sister, Susan G. Komen, she (Nancy) would devote her life to ending breast cancer forever. Suzy was diagnosed in 1977, in the dark ages of BC, and sadly she died from the disease at age 36, leaving behind 2 young kids and a grieving family. Give the Goodman family credit: they channelled their grief and put it to good use. In 1982 Nancy’s promise became Susan G. Komen for the Cure® and “launched the global breast cancer movement,” whatever that means.
Komen says that today it is “the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures.”
Perhaps Komen is best known for its Race for the Cure®, which has raised a ton of money and Komen claims to have “invested more than $1.9 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.” I love the idea of an army of pink in races across the globe. Walk, run, push a stroller, whatever, but get kitted out in pink and raise some serious cash. No argument from me on this one.
I wasn’t well enough to do the Houston race this year, but several people I know did, and the race was a success, financially and from a feel-good standpoint. One of my sweet friends, Paula, did the race in Salt Lake City and was kind enough to put my name on her back, something that touches me to the depths of my soul.
I have no argument with Komen’s claims to be the BC authority, nor with the money raised. However, it does bug me that Komen’s quest for “the Cure” has been so fruitless. While I very much appreciate Komen making BC the most glamorous cancer, where is the Cure? Komen has been working since 1982 to find it, and yes it certainly is a complicated bugger, but I’d sure like to know what progress has been made.
Forgive my pessimism, but I don’t see what Promise Me perfume is going to do to find the Cure. Katie was kind enough to break down the math on Komen’s latest marketing cash cow, and basically here’s how it plays out:
A 3.4-oz bottle of Promise Me Eau de Parfum sells for $59.00. Of that, 13.5% goes back to Komen , but only $1.51 per bottle will be spent on research.
No, that’s not a type-o.
$1.51 a bottle goes toward research.
Now, I’m not going to get into the many ways in which this is completely whacked, but suffice to say that $1.51 a bottle isn’t going to find “the Cure.”
I’ve looked at Komen’s figures before and was shocked to see how precious little is devoted to research. I’ve heard survivors who do the Race for the Cure complain that every penny of the entry fee goes to cover administrative expenses. Again, where is the Cure?
At the risk of sounding like the granny in the old-school Wendy’s commercials who asked “Where’s the Beef?” I do wonder where’s the Cure.
A quick peek at the charity navigator website talks a lot about Komen’s program expenses, fundraising expenses, and administrative expenses, with nary a mention of research.
Thus, I will not be buying the new Promise Me perfume, no matter how seduced I am by its “alluring Floriental fragrance combining classic elegance with a modern twist.”
I don’t even know what Floriental is, but I know I don’t want it. Even though its “initial impression is fresh and uplifting.” I can get fresh and uplifting from a bar of soap, thank you very much.
The marketing material claims that “as the fragrance becomes one with your skin, the floral bouquet blossoms in the heart, revealing sensual femininity.”
Oh, so that’s how I get my sensual femininity back after having both breasts chopped off? By spritzing some Floriental toilet water to lend “warmth and opulence and envelope the senses with a long-lasting trail”?????? How about find the Cure, so women like me don’t have to go through what I’ve been through? How’s that for an idea?
Maybe the “top notes of mandarin, bergamot, and blood oranges” blend nicely with the “base notes of white patchouli and creamy musk” to accomplish a good scent, but if you know what “sparkling yuzu” is will you please let me know? And tell me what it smells like.
Because I think it’s the smell of innocent consumers being hoodwinked.
You’ve got 5 more shopping days until my birthday. Don’t bother with the Promise Me perfume.
Listen up, people: this is really important.
If you’re not familiar with The SCAR Project, I am happy to introduce you. I’ll be honest: there are some photos that may disturb you, because the photos show “large-scale portraits of young breast cancer survivors,” and present a “raw, unflinching face of early onset breast cancer while paying tribute to the courage and spirit of so many brave young women,” according to the project’s website. While the photos are indeed raw and unflinching themselves, I challenge you to man up and look at them anyway. They’re very tastefully done, no train-wreck gore or gratuitously scary stuff. Get past the cover model who is visibly pregnant and sporting a single-mastectomy scar on her chest. Her belly is beautiful, as it contains a newly forming life, and her scar is a badge of honor.
The project’s acronym stands for “Surviving Cancer. Absolute Reality.”
I like that little double entendre. Well, let’s be honest: I like most double entendres, but this one in particular speaks to me. As does the project’s media slogan: “Breast Cancer Is Not a Pink Ribbon.”
I’m all for the pink-it-up attitude that the Susan G Komen for the Cure and other organizations espouse. While I think it’s a little weird to see the pink ribbon and “awareness campaign” on products ranging from golf balls to toilet paper and all parts in between, and while I question how much all this awareness really does to actually fight the dreaded disease, I am grateful that Suzy Goodman Komen was the kind of woman who wanted to make a difference, even though she would not be a survivor. Because of her and her family, most notably her sister Nancy G. Brinker, breast cancer went from a shameful secret shrouded in secrecy to the glamour disease du jour.
I’m not interested in getting into the debate in the BC community over how much good the Komen organization has actually done. I completely understand the frustration felt by women with Stage IV BC over the lack of research done on their end of this vicious disease. According to Brinker’s book, Promise Me, the Komen organization has contributed some $1.5 billion to research and community programs, but it seems that precious little reaches the metastatic BC demographic. I understand, and I struggle to see the connection between awareness and finding a cure. Regardless of funds and allocation, however, I’m grateful that in the 25+ years that Komen has been around, the global breast cancer movement has worked to eradicate the shame that used to accompany a BC diagnosis. The SCAR Project is following suit.
As I’ve mentioned before, Bestselling author Barbara Delinsky also lost a loved one to BC. Delinsky was 8 years old when her mom died from BC, yet according to her book Uplift, she was in her teens before she learned that her mom had breast cancer, and it was years before her dad could say cancer, and even longer before he could say breast.
One of the women featured in Uplift, Elinor Farber, lost her mom to BC, too, and said when her mom was diagnosed 45 years ago, there were no mammograms, and mastectomies were just short of a butchering. Farber reports that her mom lived more than 30 years after her surgery, but never once spoke of her condition. “Mom endured everything without the support of friends and neighbors, who were not told. My sister and I were both told of my mom’s condition in hushed tones, and we were sworn to secrecy.”
We’ve come a long way.
But not until The SCAR Project have people been forced to see–I mean really see–the impact of breast cancer.
The project focuses on women aged 18 to 35, a demographic in the breast cancer community that is not well represented. Although it’s estimated that more than 100,00 women younger than 40 will be diagnosed with BC this year, and although BC is the #1 cause of death of women aged 18 to 40, the younger members of the pink ribbon club don’t get a lot of press.
When I was diagnosed last April at the tender young age of 40, I quickly learned just how little press we young-uns get. All of the literature I received from my darling breast surgeon featured grey-haired grannies. Not a single image in any literature showed anyone within 20 years of my age. My darling breast surgeon, who is younger than me, agreed that the lit needs a major overhaul, and she teased me about being the one to get the ball rolling. Sure thing. Now that I’m finally off the antibiotics and over the post-mastectomy infection, I’m on it.
Sadly, I’m too old for The SCAR Project; otherwise, I would sign up right this second to be a SCAR model. Well, not right this second but after living in the gym for several months and eating nothing but salad. No dressing. Kidding. After countless doctor visits and multiple hospital stays, I’ve long shed any modesty about disrobing, and I’ve been known to show my scars in all their glory to anyone who asks. The nurses in my various doctors’ offices don’t even offer me the paper gown anymore, because they know I won’t use it. Save a tree, people; I’m over it. In fact, I may contact photographer David Jay and tell him I’m overage but have an abundance of scars. Way more than the women on the SCAR website. No that it’s a contest or anything.
Like Komen, the initial goal of The SCAR Project was to raise awareness and money. But it became so much more. Jay explains that he was not prepared for something so beautiful:
“For these young women, having their portrait taken seems to represent their personal victory over this terrifying disease. It helps them reclaim their sexuality, identity, and power after having been robbed of such an important part of it. Through these simple pictures, they seem to gain some acceptance of what has happened to them, and the strength to move forward with pride.”
Yeah! Go girls! This model from The SCAR Project looks like the epitome of a fierce survivor. While no doubt she’s battle-weary and has seen things and faced trials she never thought possible, the mere fact that she participated in The SCAR Project tells me that she is indeed moving forward with pride.
I’m not quite there yet, personally, with reclaiming all that has been lost to my cancer, but after seeing the women in The SCAR Project, I’m a whole lot closer.
To say that a lot has happened in the last year is an utter waste of words. I’m not sure there are words to convey how much has happened in the last year; if there are, they are reserved for better writers than I.
Being diagnosed with cancer at age 40 is a shock. Duh. It’s scary and unexpected and unnerving. Double duh. 40 is when we hit our stride. For me, it meant my kids were old enough to not need constant supervision but to still need my guidance. I’d recently discovered tennis, the new love of my life, and had time and freedom to play often. I had a tight circle of friends who knew who they are and where they want to go. I was very comfortable with the direction of my life and the steps I was taking to make it the very best it could be.
Then came cancer.
That vicious beast had already stolen my sweet mama from me, when she was only 67. I was 36 and finding my own way as a mother, and needed her input and presence. But more importantly, I needed her friendship. She and I never had the contentious relationship that a lot of mothers & daughters have. We always liked each other. Maybe because we were a bit opposite: she was yielding and I was (am) opinionated. But maybe we just got lucky, and had that special relationship that some fates bestow upon some people but not others. The reason for our good relationship is immaterial; the fact was, we treasured each other, and losing her was the worst thing to ever happen to me.
Until April 27, 2010.
My guardian angels were asleep at the wheel.
I’d been getting baseline mammograms since my mom died, since hers was a reproductive cancer and that put me at a slightly greater risk. More so, though, was my OB-GYN’s diligence. Her husband is an oncologist at MD Anderson, so she’s super-tuned to cancer and its sneaky ways of getting its foot inside the door. She saved my life. Pure and simple. And monumental.
When the news came on this day last year, I listened to everything Dr Dempsey told me about my cancer, as Boss Lady Staci dutifully took notes in Trevor’s stead as he hustled home from a business trip. I held it together until the end, when she asked if I had any more questions and I had one: how do I tell my kids?
They’d watched their YaYa die from cancer, and while only 6 and 3 years old, those memories are powerful. They wanted a lot of assurance that my cancer was different in every way from YaYa’s and that it was not going to kill me, too.
One week after my diagnosis, Payton turned 11. I was gearing up for a double mastectomy, but wasn’t going to neglect his celebration, because if we can’t celebrate life and its happy moments, then cancer might as well come and get us all. We had the usual birthday breakfast on the personalized birthday plates, just as we had every year. As I placed his feast in front of him, I muttered my birthday wish, which was to make sure I was around to place that personalized plate in front of him on May 3rd for many years to come. My firstborn isn’t going to celebrate his birthday without his mama if I have anything to say about it.
The day before my mastectomy, Macy and I met Jeffrey, the orphaned mockingbird rescued by Amy Hoover’s family. We’d been hearing about this little guy, and my animal-loving girl needed to see him for herself. I had a million things to do to prepare for not only surgery but also weeks of dependency, but we made time to meet Jeffrey, and I’m so glad we did.
Two weeks later, I turned 41. I celebrated in typical fashion, with a girlfriends’ lunch and champagne that night. White cake and bubbly are two of my favorite things, and they just say “party” to me. I didn’t feel great, but I was determined to greet the next year in my life with a glass in my hand and a smile on my face. Being surrounded by my best girls during the day and my family in the evening reminded me that life goes on and that while my recovery was hard, it was do-able, so take that, cancer.
A few days before my birthday, I strapped on as much determination as I could muster and took Macy to see Taylor Swift at the Toyota Center with her best bud, Ella, and my partner in crime, Jill. I was so afraid of being jostled by the crowd, as I was still pretty sore and healing was far from complete. But I wanted to be there and be a part of that big event, and to prove to myself that life doesn’t stop for cancer. I’d lost my breasts but not my drive. The glowsticks burned brightly as the music thumped, and I sat next to my favorite girl and soaked it all up. Every last drop.
Good thing I did, because my healing and happiness were short-lived.
Just as I felt like I was really recovering from the mastectomy, the nosocomial infection entered my life. A curveball? And how.
Hospitalized for 9 days, pumped full of antibiotics, right tissue expander removed and left expander drained, my life took a decidedly unpleasant turn. It took 6 weeks to diagnose the mycobacterium, and nearly a month total of days spent in the hospital. That first 9-day stay was the longest of my hospitalizations, but also the scariest because the infection was hiding under the tissue expander, hard to diagnose but making me really, really sick. A month after the 9-day stay, I was back in the joint. Out for 3 days and back for 5 more days. Then, out for 2 weeks and back in for 3 days. A seemingly never-ending cycle. Each time I had to go back in, Macy would hand me Froggy, her most beloved of all her “crew” of stuffed animals. He’s been with her since she was a tiny baby and has enjoyed favored status among the masses of other stuffed animals. He’s been in her bed every night and has gone on every trip she’s taken, and she gave him to me to take on each trip to the hospital. He had a bath in hot, bleachy water with an extra rinse every time he came home to her.
She also gave me Baby Snoopy, another coveted member of the “crew,” and my heart swells at the idea of my baby girl’s thoughtfulness. Though she hated to see me go back to the hospital, she knew her “crew” would comfort me in her absence.
Gross picture, yes, but I did make it smaller so you don’t have to see it in all its glory. Apologies to Christy, who hates this kind of stuff, and Julie: you’d better start skimming because this is the icky part. The aftermath of the mycobacterium is unpleasant, for sure. And this is not the worst shot there is; this shot was taken after much healing had occurred, believe it or not. The wound left behind by the infection was 5.6 cm long, 3 cm wide and 2 cm deep. That dang bug wreaked a lot of havoc on my already-ravaged right chest wall, and it killed what little bit of healthy tissue was left after Dr Dempsey scooped most of it out to rid the cancer. It’s an insidious bug that is hard to treat. It’s not drug-resistant, like MRSA, but it is very slow-growing and so it responds slowly to antibiotics. Hence the long, long, looooooooong course of oral abx and the multiple rounds of IV antibiotics, at home and in the hospital. I still have this collection on my kitchen counter, to take twice a day, but luckily haven’t needed the IV version since the last go-round in March. No idea when I’ll get off the oral abx, but sweet Dr Grimes, my infectious disease doc, has told me that he has patients who are on abx therapy for years. Years. Plural. Egads.
Trevor and I became fluent in home health care and learned how to administer the vancomycin and cefapim all by ourselves. The learning curve wasn’t steep, and the whole process was very systematic. My home health nurse, Chona, was as kind and competent as could be, but the gravitas of my situation was clear.While I dreaded it and resented the 3 hours it took twice a day to infuse, I counted my blessings and reminded myself that it could be worse: I could be getting those drugs via IV in the hospital. Again. Which is why I smiled for the camera, tethered yet again but happy to be at home, with Snoopy to keep me and my IV pole company. And yes, that is a glass of wine on the table next to me. It was a dark period in my life, people; don’t judge.
This is what Sucky’s appendage looked like strapped to my body, so it could suck out the gunk and speed the healing from this curveball. The size of the plastic sheeting and the tape required to keep the Sucky train rolling was big enough to give me the vapors, and my poor skin is shuddering at the memories right now. And isn’t everyone thankful that I didn’t have a better camera than the one on my iPhone? Imagine how gruesome the photos would be! Oh, the horror.
The amount of supplies needed to deal with that wound was staggering. The home health stuff was delivered in big boxes, which cluttered up my office and dining room for a day or two before I said enough! and organized everything to minimize its presence. Out of sight, out of mind (sort of). I pared it down as much as I could.
I became proficient at prettying up the ugly truth of cancer treatment, and its equally- ugly friend,infection aftermath, fared the same. I may not have had control over the mutating cells in my body or the nasty bug that invited itself in post-mastectomy, but I sure could dictate how my surroundings would look during the after-party.
The amount of supplies needed for this fragile existence was great, and so was my need for comfort. That I found comfort in bubbly and coconut cream pie should come as no surprise to anyone who knows me. I may have been down and out, with cancer and infection taking their pounds of flesh (literally), but I was powered by Piper and pie.
The summer wore on and I barely saw the sun. And only then, through the window; I didn’t get out much. Between the hospital stays, feeling puny, IV drugs, and being on guard against germs, I missed out on a lot.
I did make it to Macy’s 2nd grade last-day-of-school festivities. She had something funny to say when it was her turn to take the podium, and although I don’t recall what it was, I’m glad I was able to be there to see her in action. I also dragged my sorry carcass to Payton’s 5th grade farewell. My friends in high places in the school volunteering world pulled some strings and had a reserved seat for me, along with a parking cone to save a parking place for Mary, who carted me there and back. My baby was moving on to middle school, and I was moving slowly–very slowly–toward recovery, from cancer and infection.
Right before school ended, Payton was honored with a spot on the All Star team. This boy lives & breathes baseball, and has from his earliest days, so this is a big deal.
The team went from District to Sectionals to State (or maybe Sectionals to District to State), and I made it to 1 game. Being in the hospital while my favorite player did that thing he does best was hard on this mama. His team had a lot of heart, in addition to some mad skills, and they were kind enough to play in my honor for the duration of their run toward State champs. I’ve never been more honored and humbled as when he came home from practice the night before the first tournament (District? Sectionals?) with a pair of pink sweatbands on his wrist. Learning that the entire team was wearing the pink, for me, moved me, and like the Grinch, my heart swelled to maybe a normal size.
I’ll be forever indebted to all the other All Star moms who cheered for my boy and provided yard signs, pool parties, custom shirts, and child-wrangling assistance in my absence, at our home field and on the road. Missing the games was hard, but knowing that my circle of baseball moms had my back made it bearable. And having my signed photo of the boys in red (with a dash of pink) brightened my hospital room and my spirits. That frame now sits on my dresser, and every day when I see it I remember not only the special summer of baseball success but also the pure hearts of the families on that team who helped my own family in our time of need.
Good things can come from a bad situation. There is hope inside a diagnosis. You get a measure of the depth of people’s kindness, which comes out in lots of ways. Like custom cupcakes. I liked that one a lot, and so did my kids.
Like a card signed by the staff at PF Chang’s during a celebratory lunch. Our waiter knew we were celebrating some good news in the cancer battle and took it upon himself to have his co-workers celebrate along with us. I said it then, and I’ll say it again: Eat at Chang’s!
My friend Paula from Duke ran in the Salt Lake City Race for the Cure in my honor and sent me her bib from the race. At that point, I was a long way from even considering doing a 5K, so it did my heart good to know she was out there, pounding the pavement among an army of pink and thinking of me.
One weekend in between hospital stays, Macy and I snuck away to Galveston with Christy and her daughter Alexis, for a much-needed break from illness, wound care, and calamities. Macy caught a huge fish off the dock, and seeing her proud smile made the trip even better. There’s something magical about the sunset off the water, and I savored the splendor.
Once word got out that the puppy-sitting business was up & running, we got to keep Pepper for several days. My kids loved having her to snuggle with on the couch, and I relished the idea that the hard times were morphing into better times.
School started, much to my children’s chagrin, and Payton went off to middle school while Macy began 3rd grade. A few days after school started, I was fresh out of the hospital, she and I rocked out at the Jack Johnson concert in the Woodlands. Because I had been hospitalized, again, so recently, my attending the show wasn’t a sure thing. I still had the dressing on my port-a-cath and wasn’t feeling great. What is a sure thing, however, is that I’m as stubborn as cancer is shitty, so I made it to the show.
August and September were spent recuperating, and at the end of September I hobbled myself on down to Tootsies, a chichi clothing store in the high-rent district that was outfitting survivor models for the Couture for the Cause fashion show. I’d only been out of the hospital for a month, but I had committed to doing the show and I made good on my word. Scared breathless and unsure of myself are not states in which I commonly find myself, but the fashion show landed me smack dab in the middle of “What in the world am I doing?” territory. I wasn’t wild about the dresses I wore, but my shoes were a-maz-ing and the experience is one I truly will never forget. Oh, and we raised almost $100K for the cause.
October signaled the return of some normalcy. I was able to put together something I’d daydreamed about a lot in the hospital: the First Annual Pink Party. I wanted to gather my circle of girls who had seen me and my family through the roughest part of the “cancer journey” to show my thanks and spend some non-sick time together. With the pink theme, yummy food (if I do say so myself), and plentiful drink, it was a smash success.
We seemed to have the infection under control and the antibiotics were doing their job, and after a much longer-than-anticipated hiatus, I was back on the tennis court. My sweet tennis friends gave me a little trophy that says “Winner,” and it’s the best trophy I’ve ever won.
This little trophy soon had a friend, though, after Boss Lady and I won the Witches’ Open at the end of October. Being back on the court with my tennis friends was so great. Tennis is very good therapy.
As if that day wasn’t fun enough, that night was the Maroon 5 concert in the Woodlands. Tennis, then dinner and the show was a balm for my battered soul. We ate & drank then sang along with Adam for an unforgettable night.
Before too long, fall was upon us (or what passes for fall in Houston), and we readied ourselves for the holidays. Thanksgiving was spent with Team Cremer, with everyone contributing something to the feast. The kids worked off their meal with the traditional post-turkey swim. We had a lot for which to give thanks.
Christmas and the New Year came and went, and before I knew it was time to start making preparations for reconstruction. The Big Dig was a big step, and I had hoped it would signal the end to my “cancer journey” and allow me to put all that hardship behind me. Adding another doctor, and another Dr S, to my cast of characters could only mean one thing: I was going in for a very big surgery.
The DIEP procedure is amazing and hard, in a lot of ways: time consuming, intricate, detailed, and not infallible. Babying the newly transplanted skin, tissues, and blood vessels was hard work, and the crack team at Methodist in the med center did an outstanding job.
It was a hard 3 days, no lie, but at least I was going home. One thing I would miss from the hospital was the morphine. Oh, how I love that stuff. I guess a lot of people do, too, because they guard it closely and I got a laugh from the ping-pong-paddle-key used to replenish my supply. Kinda reminded me of a gas station restroom key.
One thing I would not miss from the hospital was this chair.
This was the chair in ICU that I had to hoist myself into, after hoisting myself and my 17-inch-long abdominal incision out of bed. Again, it’s a good thing I’m so stubborn, because it would have been easy to roll over, say this is too hard, too painful, too much. But by golly I was going to get out of that bed and into that chair no matter what, and with my morphine pump in hand, I did just that. I don’t think I cussed too much, either.
Recovery from The Big Dig is ongoing, and they say it will take a while longer. I’m not the most patient person, and I’m ready to have everything back to normal. Of course I know there’s a new normal, and it progresses at its own pace, not mine. It’s been a long, tough “journey,”and it seemed that everything that could go wrong did go wrong, for a while.
But a lot of good things have happened, too. I started blogging, for one, with Pedey at my side or in my chair, or both; who knew so many people were interested in my little “cancer journey?” It’s humbling and rewarding to see my “readership” grow, and I am immensely grateful for all the love and support that’s come my way. Someday I may have no cancer-related news to share. How weird will that be? I imagine I’ll find something to talk about in this space, nonetheless.
I will have more stories to share about my adventures with Dr S. There are a couple of revisions that he needs to make to his palette that is my newly constructed chest, and while we argue about the timeframe for that, it will likely provide blog fodder and laughs along the way.
And like the butterfly bush in my backyard that was uprooted and tossed around by high winds recently, I weathered the storm. I’m setting my roots and hoping that the winds that blow my way in future are calmer.
When you think of a breast cancer survivor, what comes to mind? A granny all decked out in pink? A joyful gal in a ball cap crossing the finish line at the Race for the Cure? How about a sad sack sitting in yet another hospital waiting for yet another test? You might think that surviving the diagnosis, the surgery, the treatment(s) and any subsequent complications means you’re done, right? Wrong. You’re wrong. It doesn’t end there, and there’s no prize for getting through it.
Welcome to the next phase of survivorship: the constant vigilance required to ensure the cancer isn’t making a repeat appearance. Although I’m just getting started, I’ll quit my bitching just long enough to say I am grateful that my doctors are vigilant, that I have good insurance, and that I can get the majority of my tests done 10 minutes from home. That said, it’s still a giant suck-fest.
Today’s test is a CT scan to check 2 little spots–1 on my liver & another on one of my lungs. These little gems were uncovered during a CT scan the last time I was hospitalized, in mid-August. No one seems too worried about them because they are so small, but once you’ve had cancer, you learn the hard way that there is no sure thing. There is no guarantee. A spot is a spot, no matter how small, and a spot is never a good thing once you’ve had The Big “C.”
Hence today’s CT scan. I’ve never had an abdominal scan before, so I didn’t know that in addition to the fasting and IV contrast (where they inject dye into my veins), I also get to drink the dye. So instead of my daily cup of coffee (which, by the way is the #1 reason I get out of bed each morning), I had to gulp down two big cups of Sprite mixed with contrast dye. No ice. No vodka. That’s just mean. I don’t like Sprite on a good day, and by good day I mean one in which the Sprite is mixed with vodka. Lots and lots of vodka. The only good thing about drinking these 2 vile cups is that I could have burped loud enough to seriously impress a room full of middle-school boys. Too bad the waiting room was full of old people, who either wouldn’t hear it or would think it was rude to launch into a Buddy-the-Elf style burp.
After the Sprite-fest was the IV contrast. Ugh. I really don’t like needles, but have had enough of them in the last 6 months, whether IVs or blood draws or shots or port flushes, to kinda get used to them, but I still don’t like them. My veins on the left side have been used so much that they rebel. They act nice at first, so right after the big stick, to pierce the skin and enter the vein, it seems as if it’s going to work, but just as the nurse is threading the needle higher into the vein, that vein says, nope, no farther. The nurse typically digs around a while before giving up and moving to the other arm.
Cue the complication: because my infection was on the right side, and because I’m working hard to avoid lymphedema (swelling from surgery or trauma that can be permanent and that is seriously contraindicated with tennis), I’m supposed to avoid getting my blood pressure taken or blood drawn from my right side. But that’s my good side! That vein hasn’t been used & abused so much that it pouts and throws a tantrum like a toddler who’s way past nap time.
Luckily, the nurse was very nice. She listened to my long, drawn-out story about my bad luck on the right side and bad veins on the left, and rolled up her sleeves to try and make it work. Work, it did, with just a little big of digging on her part. After the IV it was time to lay down on the CT machine. No big whoop. No trick there, just suck it up because it’s hard plastic instead of Tempurpedic. And then the fun part: injecting the contrast. If you’ve never experienced this, let me be the first to tell you that if you have to go through this, remember: as the dye enters your vein and travels throughout your body, you will feel a warm, wet sensation. Don’t panic and think you’ve wet your pants. Don’t worry too much about it because before you know it, the “did I wet my pants?” sensation is replaced by a crushing headache and the feeling of wanting to simultaneously vomit and pass out. It’s also ok to want to cry for yo mama. The good thing (!) about all this is, it doesn’t last very long. So before you know it, the “wet pants, gonna puke, but wait I might pass out” feeling is over, the scan is done, the nurse yanks the needle out from your vein, and you are free to go. Come back in three months, though, to do it all over again.
So the survivor vigilance is a lot of work. It’s hard enough to live with a monkey on one’s back, wondering if/when the cancer is going to recur. It’s hard enough to wonder, am I doing enough? Asking the right questions? Worrying about the right issues? Researching the right stuff? It’s hard enough to put complete trust, and thereby one’s life, in the doctors’ hands. They are human, ya know. As schooled and trained and rich in experience and purpose as they are, they’re still human. So as much as I do trust them, there’s always that little voice in the back of my head wondering, what if they’re wrong? What if they made a mistake?
Nobody said it would be easy, but I really didn’t think it would be this hard. That’s why I have this cute little pillow on my bed, to remind me that yes it’s hard, but dadgummit, I am indeed a survivor. Period.