My October Blues

October 12, 2015 by Musings of a Cancer Research Advocate

October used to be one of my favorite months: the brilliant blue sky, the sharp crispness of the air, the beautiful turning of the leaves, and the fact that my birthday was just a few days before Halloween. But 8 years ago, that all changed.

Back in October 2007, I had finally completed my chemotherapy. I’d finished the uncomfortable tissue expansion sessions that were part of my reconstruction. And the tissue expanders had finally been replaced with my silicone implants. But on that day, the fact was that I was still healing, completely exhausted, in the throes of so-called “chemo brain,” and once again hiding my bald head beneath a scarf to protect my scalp from the newly cold temperatures. I’d just stepped into the grocery store and was dragging myself from aisle to aisle, trying to find something–anything–that might appeal to me, since everything I ate still tasted like it was thickly coated with metal. And although I’d been wearing scarves or a wig while at work or out in public for many months, I was feeling more subconscious than usual–because everywhere I looked (and I do mean everywhere), all I could see was light pink, dark pink, muted pink, bold pink. The yogurt, the soup cans, the magazines, the cash registers themselves, balloons (really, balloons?)—they were all covered with pink ribbons announcing “Breast Cancer Awareness Month.” Of course, I’d noticed the ribbons during Octobers past, and I’d been donating to the American Cancer Society and Memorial Sloan-Kettering Cancer Center for many years. But on this day, I was seeing the ribbons with a completely different, somewhat embarrassed, and resentful perspective. Perhaps selfishly, thanks to those Pink PINK Ribbons RIBBONS everywhere, I felt like there was an immense, gaudy, Coney Island-like flashing pink arrow in the air pointing directly at me. And just minutes later, a stranger apparently did notice that strange ribbon-shaped arrow hovering over my head. She walked right up to me in the produce aisle, leaned over, and whispered, “I like your scarf. And I wanted to tell you that just about a year ago, I was exactly where you are today. I’d just completed my treatment for breast cancer, my hair was just starting to grow back, and I felt like I’d been through hell and back. Was your diagnosis breast cancer, too? I wanted you to know that you’ll get through this and that you’re going to be just fine.”

She was a sweet person, and I did truly appreciate her kindness. But I was also mortified. I hated being so conspicuous–and quite honestly, I felt like a woman who was pregnant when complete strangers felt they had the right to touch her stomach. It was hard enough for me to go out in public every day exhausted, pale as a ghost, and without hair, hiding that fact beneath my scarves or my wig, so I essentially felt “outed,” albeit by a woman who had been through what I was experiencing and showing her support and kindness. By the time I finally got out of the store, just the thought of a pink ribbon worsened the metal taste in my mouth.

AngryDog

Since that time, the pink ribbons in October have become more ubiquitous than the falling autumn leaves. They are at the heart of cause-related marketing, where it’s nearly impossible to get through a day in October without seeing a pink breast cancer awareness tee shirt, a pink fuel truck, pink blenders, pink guns (yes, really: guns!), pink beribboned bottled water containing BPA (a known cancer carcinogen), NFL players running onto the field in their pink gloves and socks, and on and on and on it goes. But what many people still do not realize is that some of those companies that slap pink ribbons onto their products every October actually do not contribute to breast cancer research–or, in other cases, make contributions that are not tied to the purchase of the pink products in question.

That’s bad enough. But in my humble opinion, there’s something much much worse–and that’s the steady stream of inaccurate, misleading, and downright false “facts” about breast cancer that appear everywhere you turn, “feel-good” story after feel-good story in every newspaper, magazine, and grocery store circular, and interviews touting how this or that celebrity “beat” breast cancer. So this October, I’ve decided to do my best to debunk some of the myths that have become nearly as ubiquitous as those pink ribbons.

The first that immediately comes to mind is one of the most frustrating, because there are some in the medical community and a number of breast cancer organizations that continue to perpetuate this myth. You guessed it: “Mammography saves lives.” Or said another way, “mammography can only help women and couldn’t do any harm.” Believing these statements leads to a dark slippery slope paved with additional myths, falsehoods, and misunderstandings:

“She must not have gone for her annual mammograms: otherwise, she wouldn’t have been diagnosed with metastatic breast cancer.”

FALSE!

“After all, no one dies of breast cancer anymore.”

FALSE!

Remember the 2011 ad above from Susan G. Komen–which has been described as the “most widely known, largest, and best-funded breast cancer organization in the United States”? (The red circle cross-out is mine.)

The good news is that when this ad was released, Komen came under fire from scientific experts and knowledgeable patients and advocates due to its misleading statistics and its “blame the victim” message. In fact, two professors from the Center for Medicine and the Media at The Dartmouth Institute for Health Policy and Clinical Practice, Lisa Schwartz and Steven Woloshin, published an essay in the British Medical Journal (BMJ) (2012;345:e5132) stating that Komen’s 2011 Breast Cancer Awareness Month campaign “overstates the benefit of mammography and ignores the harms altogether. A growing and increasingly accepted body of evidence shows that although screening may reduce a woman’s chance of dying from breast cancer by a small amount, it also causes major harms, say the authors. Yet Komen’s public advertising campaign gives women no sense that screening is a close call. Instead it states that the key to surviving breast cancer is for women to get screened because ‘early detection saves lives. The 5-year survival rate for breast cancer when caught early is 98%. When it’s not? 23%.’ This benefit of mammography looks so big that it is hard to imagine why any woman would forgo screening. But the authors explain that comparing survival between screened and unscreened women is ‘hopelessly biased.’ For example, imagine a group of 100 women who received diagnoses of breast cancer because they felt a breast lump at age 67, all of whom die at age 70. Five year survival for this group is 0%. Now imagine the women were screened, given their diagnosis three years earlier, at age 64, but still die at age 70. Five year survival is now 100%, even though no one lived a second longer. Overdiagnosis (the detection of cancers that will not kill or even cause symptoms during a patient’s lifetime) also distorts survival statistics because the numbers now include people who have a diagnosis of cancer but who, by definition, survive the cancer, the authors added. If there were an Oscar for misleading statistics, using survival statistics to judge the benefit of screening would win a lifetime achievement award hands down, they wrote.”

Even more alarmingly, these authors conducted a survey where they “found that most US primary care doctors also mistakenly interpret improved survival as evidence that screening saves lives. Mammography certainly sounds better when stated in terms of improving five year survival – from 23% to 98%, a difference of 75 percentage points. But in terms of its actual benefit, mammography can reduce the chance that a woman in her 50s will die from breast cancer over the next 10 years from 0.53% to 0.46%, a difference of 0.07 percentage points. The Komen advertisement also ignores the harms of screening. The authors noted that for every cancer detected by mammography, ‘around two to 10 women are overdiagnosed.’ These women cannot benefit from unnecessary chemotherapy, radiation, or surgery. All they do experience is harm.”

AngryCrab1

The emphasis on the term “overdiagnosed” is mine: because overselling of screening mammography has resulted in an enormous increase in the number of women who are treated for breast cancer–but most of whom would never have developed breast cancer if left untreated. The fact is that for women of average risk, screening mammography has led to a dramatic increase in the diagnosis of Ductal Carcinoma in Situ (DCIS). DCIS, which is an overgrowth of cells in the milk ducts, lacks the ability to spread, and more are beginning to argue that its description as “breast cancer stage 0” is a misnomer—because DCIS is not in fact cancer. Rather, as breast surgeon and breast cancer oncology specialist, Dr. Laura Esserman, has described it, DCIS “is a risk factor for cancer. Many of these lesions have only a 5 percent chance of becoming cancer over 10 years.” However, because there is not yet a way to accurately predict which patients are at most risk of progression to invasive disease, most cases of DCIS are treated aggressively, e.g., with breast-conserving surgery (lumpectomy), radiation, mastectomy, and/or in some cases, hormonal therapy. It’s been estimated that DCIS comprises up to 30 percent of “breast cancer” diagnoses. Yet for the majority with DCIS, the precancerous lesions will stay in place (i.e., “in situ”), will not become invasive, and therefore will never pose a life-threatening risk. The result: overtreatment, where hundreds of thousands of women are undergoing aggressive cancer treatment and at risk for such treatment’s adverse and potentially late effects when they may not have needed such treatment. (Fortunately, ongoing research is taking place, including validation studies of an OncotypeDx for DCIS, with the goal of helping to identify patients who may need less aggressive therapy or no treatment other than “watchful waiting.”)

So the story of screening mammography for DCIS is not a success story. Nor has it been a success story in detecting late-stage disease. As Dr. Esserman has stressed, if life-threatening breast cancers began as DCIS, the incidence of invasive breast cancers should have steeply declined with increasing detection rates. However, that has not occurred.

More Myths

However, cause marketing is not the only source of misleading or inaccurate breast cancer “facts.” Breast cancer misinformation is often compounded or reinforced by celebrities who are breast cancer survivors. Remember Melissa Etheridge’s outrageous comments in AARP Magazine, when she and her buddy, Sheryl Crow, discussed how “They Beat Cancer” and provided “Lessons for All of Us”? (Yes, I’m still furious.) With just the headline, before the article even began, AARP’s magazine managed to perpetuate dangerous myths and to condescend to every one of their readers: women, men, those who have had or are currently receiving treatment for breast cancer, those who have lost loved ones to this terrible group of cancers, and those who will be impacted by breast cancer in the future. Let’s start with the statement “beat cancer.” It’s fortunate that both singers are doing so well and that their treatment has been effective for them to this point. But tragically, approximately 25% of women with breast cancer have a recurrence, where the cancer has returned—and for women with estrogen-receptor positive (ER+) breast cancer, nearly 33 percent experience a recurrence. Furthermore, over half of recurrences for ER+ breast cancer are detected more than 5 years following original treatment, in some cases decades later, as opposed to other breast cancer types that tend to recur within 5 years of the original diagnosis. Research suggests that late relapse is most likely due to “tumor dormancy,” where there is a prolonged phase between cancer treatment and detected evidence of disease progression. It’s thought that cancer cells that were able to escape the patient’s initial treatment are able to survive by hiding in a latent state for years or decades, ultimately coming out of dormancy and leading to incurable breast cancer metastases. So the important truth here is that we currently have no way of knowing who has “beat” breast cancer. As Dr. Susan Love has explained, “Breast cancer can be cured. In fact, we cure three-quarters of breast cancer; the problem is when somebody is diagnosed with breast cancer, we can’t tell that woman that she is cured—until she dies at 95 of something else. So, we know we cure breast cancer, but we never know if any one particular person is cured at any one time.” Crow was reportedly diagnosed with stage I ER+ breast cancer. Although Etheridge has disclosed that her cancer was stage II and that she has a mutated BRCA2 gene, I was not able to locate the hormone receptor or HER2 status of her breast cancer. Though I sincerely hope that neither ever develops a recurrence, we simply cannot know whether either woman is “cured” of her breast cancer.

It was also infuriating to me when Etheridge, scientific expert that she is, said in the same interview: “This was my own doing, and I take responsibility. When I got my body back in balance, my cancer disappeared.” Excuse me? Breast cancer is NOBODY’S FAULT. And no, her cancer didn’t “disappear” because she made healthy changes for her body. Sure, eating well and having a healthy lifestyle certainly is a smart choice for everyone. But Etheridge no longer has any evidence of disease because she was treated for her cancer including surgery, chemotherapy, and radiation.

The Politics

And then there is Debbie Wasserman Schultz: since we know that if a politician is a breast cancer survivor, she’s an automatic expert on the science of breast cancer, right? Schultz–like so many politicians before her–apparently has no use for inconvenient evidence. When the U.S. Preventive Services Task Force (USPSTF)’s recently updated its guidelines for screening mammography based on scientific evidence, she loudly protested and politicized the issue. In an interview with Marie-Claire last year, she was asked the following:

MC: “What do you make of the fact that so many health care organizations no longer advise young women to do breast self-exams?”

DWS: “To say that I don’t agree with recommendations that say women shouldn’t get mammograms at 40 or that self-exams aren’t necessary would be an understatement. It is entirely appropriate and recommended to have a mammogram between 40 and 50. If I didn’t do self-exams, I never would have found out about my BRCA2 mutation, which gave me a 40 to 85 percent chance of developing ovarian cancer by the time I was 50. I mean, I was a ticking time bomb and I didn’t know it! To me, those recommendations send a very strong message to younger women that they’re being written off—that they don’t matter.”

What Schultz didn’t say is that the U.S. Preventative Services Task Force recommendations stress the following: “The decision to start screening mammography in women prior to age 50 years should be an individual one. Women who place a higher value on the potential benefit than the potential harms may choose to begin biennial screening between the ages of 40 and 49 years.” Importantly, they also emphasize that “Women with a parent, sibling, or child with breast cancer may benefit more than average-risk women from beginning screening between the ages of 40 and 49 years.”

Schultz, joined by 61 other legislators, sent a letter to Health and Human Services Secretary Sylvia Burwell, where they asked that the department ignore the new draft guidance by the USPSTF—in other words, asking that the department ignore the evidence. Schultz used her own story to make her case: “As a young survivor of breast cancer who was diagnosed at age 41, I am a living testament to the importance of breast cancer awareness in young women. It is imperative that no one limits the insurance coverage of preventative options for young women, especially if they have an elevated risk. While mammograms are not the only important part of preventative coverage, they play a vital role in detecting cancer in young women, in whom it is most deadly, and in raising breast health awareness.”

But did mammography actually “play a vital role” in detecting her cancer? She has stated that she “had my first mammogram a few months before I found the lump” and that if the Task Force’s recommendation had been in place, she may not have had a mammogram and her own cancer would “not have been caught early.” What’s more, she said, “We know that there are women that [sic] will die if this recommendation goes through.” Yet here’s the thing: in a 2013 Glamour Magazine interview, she said that “My diagnosis was a couple of months after a clean mammogram. I had aggressive breast cancer, and it grew fast from the time I had my mammogram, or it was there and the mammogram missed it. Nothing is foolproof. You can’t make yourself crazy, but you have to be vigilant.” So apparently, screening mammography did NOT detect her breast cancer. Schultz’s own story does not support the case she has been trying to make so vociferously.

SharkComic3

Perpetuating the Myths

But something that I saw recently is probably the most upsetting of all. On its Facebook page, BreastCancer.org shared responses from members of their Facebook community to the following question:

“It’s Breast Cancer Awareness Month. Are there issues you feel are not getting enough attention?”

The responses concerning the topic of screening demonstrated the tremendous harm that results from the misinformation so freely distributed throughout October (and all year round). Here are just a few responses:

“Mammograms for 40 years upwards.”

“Earlier mammograms!!!”

I began mammograms at 30 BC of questionable cysts and got Dx at age 49! They should start mammos at age 30. Maybe have them every two years. Raising age to 50 is nuts. I’ve had many friends Dx well before age 50.”

Earlier screening mammograms? How early? How young is too young: 40, 30, 20, 15? How many more women will be overdiagnosed and overtreated before the insanity stops?

But I do want to end my October rant on a high note. The same BreastCancer.org blog also shared some responses concerning the critical topic of metastatic breast cancer–responses showing that there may be more and more folks who are seeing through all those pink ribbons to the truths about breast cancer:

“Stage IV Needs More!!!”

“More attention and funding to metastatic breast cancer, and less attention to ‘awareness.’ Even 3rd graders are aware!”

“Stage IV research. Not enough of it. Stage IV life expectancy. Not enough of it…”

Bravo: Less attention to “awareness” and more to Stage IV and the critical need for metastatic breast cancer research funding. So enough with the pink ribbon campaigns. Ignore the celebrities who abuse the public platform they’ve been given to further spread misinformation. And a big, firm wave good-bye to politicians who ignore inconvenient facts and use their power and influence to determine what’s best for us–since apparently we don’t know any better.

Incidentally, the nice woman who came up to me in the grocery store may or may not have been correct when she said, “I wanted you to know that you’ll get through this and that you’re going to be just fine.” My breast cancer was ER+, so I’ll never know whether my breast cancer was cured–unless it recurs or I peacefully pass away of old age in my sleep. The latter, please.

A huge thank you to my sister, Ann-Dee, for these wonderful illustrations, which perfectly capture the sentiments I wanted to convey here.

Empty Inside

September 19, 2015 by Musings of a Cancer Research Advocate

Like every other woman I know, I have always HATED going to the gynecologist. It’s uncomfortable, and though I shouldn’t feel this way, I find the whole thing embarrassing. But the first time I had my annual visit with my gynecologist after having undergone my bilateral mastectomy was … the … absolute … worst.

For weeks in advance, I dreaded the appointment. And on the day of the appointment, I was in full-blown pity party mode. But I had what I think are damn good reasons for feeling sorry for myself—reasons that I typically push away or fully repress, but that refused to be ignored that day. This was going to be the first visit when the “breast exam” really wasn’t going to be a true breast exam—because I no longer had “real” breasts. Rather, I had reconstructed breasts with implants: my plastic surgeon did a phenomenal job, and with all seriousness, my oncologist said the results are among the best he’s seen. Dare I say, in the words of Sidra during the Seinfold episode called “The Implant,” they’re “spectacular.” But they’re not “real.”

I also dreaded sitting in the waiting room, where there almost always was at least one pregnant woman waiting for a prenatal visit with the Ob/Gyn. Thanks to the chemotherapy that I’d received for Hodgkin’s lymphoma in my early 20s, I’d learned many years later that I wasn’t able to conceive.

So I had reconstructed breasts, and I couldn’t have children, so the whole idea of having to go to the gynecologist felt ridiculous, and that made me angry. Of course, I knew that I still had to have my annual visits for optimal health, but I felt odd about the whole thing, like I was an imposter. So I was resentful, irritated, and worst of all, very very down, because all of this made me feel empty inside.

empty inside

But the visit itself was even worse than I expected. It began as it always does: there was a pile of paperwork to fill out, something that always annoyed me, because I’d been a patient with the same gynecologist for over 20 years, but they still made me complete it all over again every year. And then there was the never-ending wait. I liked my gynecologist a great deal as a person: in fact, he was a family friend. But not once was I taken into the exam room at the scheduled time of my appointment. And when I finally did get into the room and changed into that terrible gown, I always had another lengthy wait—but this time wearing only the gown, which made this second wait that much worse than the first.

So I finally walked into the exam room, changed into the gown, sat down, and prepared to wait. A nurse typically came in before the doctor to ask about prescriptions and to take the patient’s blood pressure. When one of the nurses finally entered my exam room, I was relieved because I just wanted the whole thing to be over. And then she said it. She was holding my chart and some forms and, with barely a glance at me, she plopped my chart on the counter. She then hurriedly tried to hand the forms to me, but I was too busy trying to keep my gown closed with both of my hands. I reluctantly let go with one hand to take the papers, as she said in an obviously distracted, hassled tone, “So as you know, of course, the top form is for your annual mammogram …” What? Did she really just say that to me? I looked down at the paper, which was indeed an order for a mammogram. As I tried to hand it back to her, I said, “Excuse me, but I won’t be needing this, as you can see from my chart.” She looked puzzled, but instead of opening my chart, she said, “Of course you do. You’re in your 40s, so as you know, you need a mammogram every year.” (Okay, if you’ve read my blog before, you know that I take serious issue with that statement, since there is no evidence of benefit for women in their 40s of average risk, yet there is evidence of potential harms associated with mammograms at that age. But I digress…) Considering the mood that I was in, I’m proud of myself that I didn’t immediately fly off the handle. But I was furious. I looked at her and waited until she finally looked me in the eyes. “No, I do not. If you had read my chart, you would have seen that I do not have breasts. They took all of my breast tissue, so there is nothing to conduct a mammogram on–except perhaps my silicone implants, but that wouldn’t make much sense, would it?” Unbelievably, it wasn’t clear whether she heard me, so I tried again. “The most recent records in my chart should include a note from my oncologist about my recent breast cancer diagnosis. And it should also include surgical records about my bilateral mastectomy and immediate reconstruction. Without having any breast tissue, I really don’t think that this mammogram is necessary, so I ask that you take this back, please.” She accepted the piece of paper, mumbling “sorry” under her breath, and then simply walked over to the wall to grab the blood pressure cuff. She asked me absolutely nothing about my breast cancer diagnosis, not the type or stage, whether it was ER, PR, and/or HER2+, what type of surgeries I’d undergone, which specific chemotherapy drugs I’d received, nor whether I had received radiation. Even when she then reviewed my current medications, she did not ask whether I was taking Tamoxifen or an aromatase inhibitor should my cancer have been ER+.

When she finally did speak, it was to ask when my last period was–more solid evidence that she had not even taken a glance at my chart. After all, it was my gynecologist who had broken the news to me that my original chemotherapy had taken my fertility. As I struggled to remember the last time I’d menstruated, she became impatient and said that I could “just estimate.” My response: “I’m not trying to remember a specific day from last month, since it’s actually been a few years. But I honestly cannot remember which year it was.” No response from Nurse Ratched.

Nurse Ratched from "One Flew Over the Cuckoo's Nest"

And the icing on the cake … Remember when she picked up the blood pressure cuff? She immediately went to my left side and went to grab my left arm. I stopped her and said, “Look, I’m not trying to be difficult. But please take my blood pressure from the right side, not the left.” She simply raised her eyebrows, waiting for an explanation. “My breast cancer was in the left breast and in the sentinel node, so the surgeons had to remove several lymph nodes.” Eyebrows remained raised, waiting for more information to try to make some sense out of what her patient was rambling on about now. “I don’t know how strong the evidence is. But my surgeons asked that I never have my blood pressure taken on the left side. They explained that because some of my lymph nodes were removed, I was at risk for developing lymphedema. Because blood pressure cuffs constrict tissue, some suggest that it may cause or worsen lymphedema. So please take my B/P on the right side.” She finally lowered her eyebrows, moved to my right side, and took my blood pressure. With no small relief, I’m sure, she then felt she was done with her “difficult” patient and headed to the door. But before she fully escaped, I called after her and pleasantly asked, “Could you please make a notation on my chart that my blood pressure needs to be taken on the right side?” She briskly nodded her head and left the room.

I immediately put my head in my hands and tried to keep the tears from coming. This nurse was clearly in the wrong profession, and I knew that the encounter I’d just experienced really said nothing about me, but spoke volumes about her. But I was absolutely livid, embarrassed, upset–and even emptier inside than I had felt just a few minutes before.

Grumpy cat

When my gynecologist entered the exam room about 15 minutes later, I’d had enough time to compose myself, and he came in with his customary warm smile, friendly handshake, and good wishes to my family. He also spent several minutes asking about how I was holding up after my diagnosis, discussing the treatments I’d received thus far, and talking about my options concerning Tamoxifen versus an aromatase inhibitor. He obviously knew a great deal about my diagnosis before he stepped into the room, was genuinely concerned, and provided me with the same exceptional care that he always does. So despite the terrible experience I’d just had with one of his staff members, I did continue with my gynecologist. However, on the spot, I decided that I would never see him in this specific office location again. Rather, I’d vastly prefer to make the substantially longer drive to another of his office locations, because I absolutely refused to have any dealings with that nurse again. I truly hope that after she’d walked out of my exam room, she thought about our encounter and realized that she owes her patients so much more: just for starters, actually LOOKING at the chart, LOOKING at her patients in the eye, LISTENING to her patients, and treating us with the RESPECT and the concern that we deserve. Sadly, however, I very much doubt that’s the case. I’d say it’s far more likely that she started shaking her head and rolling her eyes immediately after closing my exam room door, mumbled under her breath about that “pain in the ass” she just had to deal with, and then briskly went on to ruin her next patient’s day. In retrospect, though I’d been struggling with feelings of emptiness on that terrible day, it was actually the nurse who was truly, profoundly empty—empty of compassion, empty of empathy. My only regret is that I didn’t tell my doctor about his nurse’s atrocious, insulting, unprofessional behavior. However, I sincerely hope that if she didn’t learn anything from our encounter, her behavior eventually caught up with her and that she’s now in a different profession for which she is better suited—such as a clerk at the DMV.

Empty

After the Tragic Events in Newtown: A Doctor’s Vision

August 8, 2013 by Musings of a Cancer Research Advocate

For Newtown’s Children and Yours …

I first met him on an early winter day during one of the most frightening days of my life. Minutes before, I had been diagnosed with breast cancer–almost exactly 20 years to the day when I’d learned I had stage 3 Hodgkin’s lymphoma at the age of 22. Now, two decades later, my biopsy for breast cancer had been positive, and my new general surgeon, Dr. John Famiglietti, had gently broken the news. He then quietly counseled me that I should strongly consider having not one mastectomy, but a bilateral procedure, since my cancer was almost certainly due to the radiation I’d received as part of my treatment for Hodgkin’s.

I was terrified, overwhelmed, tearful, and in a complete daze, and my husband, who was similarly bewildered, was doing everything he could to comfort me. Dr. Famiglietti then said he wanted to ask a favor of me: he asked if I would give him permission to introduce me to a young colleague of his. He explained that he practiced in the same building with a plastic surgeon. Dr. Famiglietti described him as an extremely talented surgeon who also was simply a wonderful person, and he suspected that I would be very comfortable with him as a member of my new healthcare team. He paused for a moment and then gently explained that because of my previous radiation to the chest, it was crucial that my team include a plastic surgeon who was highly skilled and experienced, and he had worked many times as a team with this plastic surgeon. Through the haze, I and my husband managed to agree, and a few minutes later, Dr. Famiglietti brought Dr. Michael Baroody into my exam room.

Even though everything truly felt unreal at that point, I do remember being immediately struck by the wonderful professional relationship and level of mutual respect that the MDs clearly had for each other. And despite feeling that my life had just dramatically shifted, I began to feel a sense of comfort that these two doctors may well be caring for me literally as a team during my upcoming surgery. I had to take some time to recover from my news and to carefully consider all my options. But ultimately, I sensed even then that they would be working hand in hand during my unilateral or bilateral mastectomy and during what I prayed would be immediate reconstruction.

I was correct in that—and both doctors soon became what I often refer to as my human angels on earth. It did turn out that because I’d had radiation to the chest, my options were few. I was thin—far too thin—at the time (which is no longer an issue 🙂 ). Therefore, there was literally nothing of mine that could be used for reconstruction. The only realistic option was for me to have tissue expanders placed immediately after my mastectomy, which would ultimately be exchanged for breast implants after the expansion procedures were completed. But Dr. Baroody was completely forthright with his concern about my irradiated skin. By that point, it was absolutely critical to me that we be able to proceed with reconstruction immediately after the mastectomy. I couldn’t bear the thought of waking up after the surgery, bringing my hand to my chest—and feeling nothing there. The very thought made me completely fall apart. Just days before the surgery, I called Dr. Baroody’s office in a complete panic. He called me back in less than 2 minutes—utterly amazing—and listened carefully as I explained my fear about waking up and learning that they hadn’t been able to proceed with immediate reconstruction due to my irradiated skin. I couldn’t shake the worry, and I was absolutely petrified. As long as I live, I will never forget Dr. Baroody’s next words to me. As always, his voice was calm, and his words were direct, yet also reassuring. He said, “Deb, I promise you, if Plan A doesn’t work, we’ll then go to Plan B. There is always a Plan B. And please, let me do the worrying for you. It’s going to be okay.” When I hung up the phone, my panic was gone. I knew with 100% certainty that I was in the best hands I could ever ask for and that Dr. Baroody cared about my health and well-being just as much as I did.

A few days later, when I woke up after what I’d ultimately decided should be a bilateral mastectomy, I raised the courage to bring my hand to my chest, and I felt … the tissue expanders just where my breasts had been. And when I looked down, I saw cleavage (oh, I have never been so happy to see my cleavage 🙂 ). I closed my eyes with relief, and when I next opened them, I saw my husband, my sister, and the doctors—my human angels on earth—who had given me this gift.

What I didn’t know at the time was that, like me and my husband, Dr. Baroody and his young family live in Newtown. And today, more than 6 years later, Dr. Baroody is bringing his passion, excellence, and dedication to the children and families in our community who have been inalterably affected by the tragic events that occurred here. Knowing him as I do, I can’t think of anything more appropriate, more completely right.

And so, without further ado, I ask you to read Dr. Baroody in his own words, where he so passionately and humbly describes his critical efforts for Newtown’s children—as well as for your and ultimately everyone’s children–in a world that was profoundly changed on December 14, 2012 in Sandy Hook Elementary School, just nine minutes away from where I sit in my home today.

Dr. Michael Baroody

Dr. Michael Baroody’s Vision: The 12.14 Foundation

Upon First Hearing the News …

“I was in my office. An employee said that there was a shooting in Sandy Hook Elementary school. Initially, it was that someone, a teacher, was shot in the foot. At that point, I called my wife, and I told her to pick up our kid in Sandy Hook. I don’t care what progresses and what happens after that, I don’t want gunfire anywhere near my kid.

“So then it started progressing, and as more and more information started coming through the Internet, and patients started coming in and were saying ‘Did you hear about this?,’ I didn’t really process it. It takes me a little bit of time to digest the information; I’m not one of those people who react strongly right away. I process it, and then I start to understand exactly what’s going on. So as the day went on, it became more and more real for me as more information came in–actually more and more surreal, I should say. ‘How is this even happening?’ And then I just went home and kept calling, making sure my kids were safe. One was in lock down in first grade in a different Newtown Elementary School. And then, when my wife went to go get our other daughter in Sandy Hook at the preschool, that was under lock down, and a lot of the parents were going to my child’s school parking lot and running to the Fire House. When I got home, it was pretty emotional: I just wanted to see my kids, to be with them as more and more information came in.

“First, you heard that they were chasing a suspected van and then there were accomplices on foot. We had no idea of whether it was one person, if it’s over or not, or where your kids are, and if they’re safe or what’s going on. That was difficult, and our kids were under lock down, and we had to go get them and make sure they’re okay. It was interesting: I was relieved that my kids were okay, but because this happened, it wasn’t like, ‘Phew, I’m so relieved it’s over.’ People were calling me and saying, ‘I’m so glad that your kids are okay.’ My feeling was not anywhere near okay. It was not okay; there was nothing okay about it. If it wasn’t my kids, it was their friends [who were] their age. It really hit me the worst when scrolling down the names, when they finally released the names, and I saw that one of my patients was there [whom] I had seen a couple weeks earlier. That’s when it hit me even harder. I didn’t think it was going to be any worse. It really got worse at that point.”

The Idea to Create a Living, Breathing Remembrance

“It wasn’t right away. The way I approach things in life is that if there’s a problem, I try to fix it. That’s what I do for a living. I see a problem, and I fix it. Even in a situation where there’s a kid, I see kids who were mauled by dogs or kids who were run over by lawn mowers, horrible things. But when I go into the Emergency Department, the only feeling I have is that ‘I’m glad I’m here. I’m going to make this better.’ I can’t reverse time, but I can make this better. It’s not this feeling of ‘What am I going to do? I’m powerless over what happened.’ I want to get there; I want to make this kid better. That’s why I studied so much, all this time, was to make the situation better. But the problem with this, what happened, when I think about it, is there’s nothing I can do. I can’t reconstruct things or make their lives better. I can’t do it. They’re not here anymore. So that was difficult in itself, especially a patient of mine who trusted me, who I took to the operating room, who I had a special relationship with. The feeling was not getting better over time. And I was thinking, well what is it that can be done, that’s going to make this better, that’s going to serve the needs of the kids who survived this and serve as a living, breathing remembrance of the kids who were lost? There’s no way that it’s acceptable to me to have a static monument that’s just for sadness, that’s just going to decay over time, that’s going to rust. It’s unacceptable to me. We need something that is going to be a breathing remembrance of these kids.

The 12.14 Foundation / The Newtown Project: a Landmark Performing Arts Center

Newtown flagpole

“Architecture in many ways can express emotion and feelings. When you are in a building that was constructed for a purpose or passion, you feel the presence of those people long after they’re gone. So I thought that was one way, because there are no words to describe how bad this is. It would be another way to get this out and to express it, because how are we going to do that? There have got to be ways other than verbal communications to address a problem like this. I feel like the performing arts is another way to do that. And then it all made sense, to build a performing arts center. Because the building itself is that type of architecture, and what goes on inside the building is the actual feeling and the enrichment of lives inside that monument, I suppose. So that’s how it came about, and that all made sense.”

“There are no words to describe how bad this is.”

“Additionally, the building can be a national stage for social discussions and debate. Whatever the truth is, however it’s supposed to go, it can be a national and even a global platform. If you’re going to talk about these issues, what better place than in Newtown, CT? So it just keeps building on itself: so one being the building itself, the second being a performing arts school, so these kids are strengthened and able to express themselves, basically to give them tools–because it’s our responsibility to not just be there for these kids, to heal them and show support, but we now have to put them on a different path. We have to put them on a path not where they were going before, which was a good path, but we have to give them opportunity to be the best, to reach their potential, to be the best they possibly can be, whatever that may be, whatever they want to work for. It’s all about working hard and giving them inner tools to succeed in life. It’s much better than giving them a one-time entertainment event. Okay, you want to go to a baseball game? That’s fine, but that’s not going to heal. That’s not going to give them the tools that they need to succeed in life. When they start turning into fathers and mothers themselves, when they start having their own kids, even before, when they go to college and are leaving Newtown, when they don’t have the support here anymore, they’re not going to think about a baseball game. They’re not going to think about a free concert. They’re going to say, ‘Who am I, and do I know myself, and am I confident? Do I have support, and am I strong?’ That’s what they’re going to want; that’s what they’re going to need. So it’s our responsibility to give that.”

Children at Risk

“No doubt about it: you see certain kids, and they experience a trauma or some event in their lives, and they actually get stuck in that moment. They never grow up. They’re still that scared little kid. Their whole lives, they act certain ways, and they never evolve and grow, because they’re stuck. So if we can break them out of that. The most important thing to understand is that this is the situation I see in Newtown.”

“It’s our responsibility in this community to lift these kids up …”

“Let’s say you have a kid, and you’re going into a supermarket, and your kid is running around and falls down and skins his knee on the ground. The first thing that happens is that you turn around, and the kid looks up at you. And that kid has to make a decision on what he’s going to do at that point. Is he going to cry, or is he going to whimper a little bit and press forward? And it’s going to be the reaction of their parents that is going to dictate that. And if you say, ‘Oh no, oh my God’ and you start getting all upset, then they start crying uncontrollably, right? But if you say, ‘Let’s get up and brush that off. Let’s go; we’re going to do something else,’ and they whimper a little bit, and then they don’t dwell. They press on. So it’s our responsibility in this community to lift these kids up, not to say, ‘Oh my God; poor you.’ They need to be comforted initially which evolves into strengthening. Otherwise, they’re going to claim to be the victim for the rest of their lives. They will be ‘those kids from Newtown,’ and that’s unacceptable to me. What we need to do is pick them up and take them somewhere else, and they’ll heal along the way. Not ignore it, as if it didn’t happen, [but] we need to face it, attack it, and build something together. Because they’re going to look around at their peers and see how people were affected and there’s strength and that they’re not alone– ‘that person’s my brother now or my sister, and we’re together in this’, and that’s how you can attack the world. You’re not by yourself in your bedroom on a 4-acre lot. It doesn’t work that way. So that’s the premise.”

The 12.14 Foundation, The Newtown Project:
To Remember, To Honor, To Heal, and To Inspire

Debut of the 12.14 Foundation’s First Event

The 12.14 Foundation is currently sponsoring its first performing arts’ event, the musical Seussical, which is described on the Foundation’s website as a “fantastical, magical, musical extravaganza … that lovingly brings to life all of our favorite Dr. Seuss characters,’ including Horton The Elephant and The Cat in the Hat. It “celebrates the powers of friendship, loyalty, family, and community,” with multiple performances to be held between August 9^th and August 11^th.

When asked what comes next for the 12.14 Foundation following their debut of Seussical, Dr. Baroody explained:

“We are brainstorming right now. Our goal is not to be focused on any particular genre of the performing arts. The vision is ‘let’s have multiple different ways to help kids express themselves.’ It has to be a wide range of performing arts. So we may have a rock band come in. We may have kids learning how to play the guitar or learning how to sing popular music. That might be next. We’ll have to see. Or we may do a play, like a children’s Shakespearean play or opera. Or maybe a dance performance. We’re talking about bringing in professionals from around the world to interact with these kids, to inspire them and teach them things that they couldn’t have had before, to give them opportunities. They need to work for it, they need to earn it; you make a plan, and you have to fight for it. That’s the whole point: they have to fight, because what happens to you when tragedy happens [is that] there are 3 options. You can become the victim, and that becomes who you are now. You can try to ignore it. Or you can fight it head on. So this can be an example of how you fight. You do something that’s going to affect people’s lives. It’s a lot of work. It’s a lot to try to get something like this going, but that’s the point. It better be difficult. It should be. It has to be. Easy responses typically make that person feel better. Unfortunately, that’s not enough.”

“…This is a vehicle, [and] it’s not ‘performing arts for performing arts’ sake.’ It is what performing arts can do for people that I care about.”

“It’s not about you feeling better but making them feel better, because it’s hard work to try to make something like this happen. I’m not a performing arts person. Some people have difficulty grasping that. ‘How are you even doing all this without any experience?’ The goal is for these kids to have a place to express themselves. The performing arts is a vehicle to get to that point, so it’s not ‘performing arts for performing arts’ sake.’ It is what the Arts can do for people that I care about. So I don’t need to know how to dance or sing. That’s why I bring in the best people in the world to tell me what needs to be done, and they can do it. I appreciate the power of the Arts.”

12.14 Foundation Presents “Seussical” the Musical!

When asked what the response has been when he’s reached out to people, Dr. Baroody shared the following:

“When I first came up with this concept, it was Super Bowl Sunday or right around there in February. I’d thought about it a little earlier, but this was when I started to act on it and started to tell people about the vision and what I wanted to do. I met with construction people in Newtown and some of the more influential people in Newtown and said, ‘Listen, you need to put me on your plan, because this is going to happen.’ It took a little convincing, but they understood that I was serious about it. So then I said, ‘Okay, well, I don’t know a lot of people from the performing arts.’ So I just starting Googling, ‘Who is the best in the world at this? Who’s the best in the world at that?,’ and then I contacted them. The response has been really good. But if they [responded with], ‘You know what? I really respect what you’re doing, but I don’t feel it’s a good fit,’ I’d then say, ‘Okay, tell me who is a good fit?’ Who’s your friend? And if you don’t know, what’s your brother’s phone number? What’s your mother’s phone number? I don’t care; I’m not getting off the phone until you tell me where else I’m going to go. Just point me in the right direction and I’ll get there.’

“So I did that with PR firms, marketing companies, theater consultants, law firms, accounting firms, entertainment companies, and the list goes on. And when I started with them, they knew people, and then they knew people. And [then it was a matter of] just calling and calling and then having meeting after meeting after meeting after meeting. And you end up with a core of people who have a passion for the vision. And that’s all I care about, that people really believe in it, not just their name or how much money they have or what they’ve done in the past. That’s great, but that doesn’t mean anything to me. The thing that’s important to me is that you have the tools and passion to help make this happen. And I’ve gotten very good response, because I would say, for multiple different reasons, the whole world is affected by this, and the reason why it’s called the ‘12.14 Foundation’ is because it is a date in time that has affected everybody on the planet. It’s not just Newtown. It is not just for the people of Newtown. I don’t feel that Newtown really should be defined by this, though it very well may be for now. It’s not a reflection of Newtown, it’s a reflection on humanity basically.”

“…the whole world is affected by this, and the reason why it’s called ‘The 12.14 Foundation’ is because it’s a date in time that has affected everybody on the planet.”

“So the response has been really positive, but it’s like everything else. You have to really stay on top of people. If they’re going to put in an hour of their time, they’re going to feel that I’ve put in 20 hours of my time. It’s those types of organizations where you [feel that with] everything that you do, someone’s going to take that and then exponentially grow it, that ideal or that work. And the people involved are not afraid to take the garbage out, they’re not afraid to get their hands dirty and stay up late at night. So I think that people are more [inclined] to join this type of organization. Things are expected of them, but they feel that they’re going to see progress every day, that things are moving forward because of their efforts and because of everyone else around them. And it’s interesting, because everybody involved really has nothing to prove to anybody; they’re all accomplished, they’re all well-respected. They don’t really need to do this, but everything they do is purely from a good place, which is a great group of people to be around.”

Dr.Baroody then brought together his thumb and forefinger and said the following:

“Because I basically tell everybody, ‘you’re this big. We’re all this big, that’s it.’ So this event distilled us down to the core of who we are. Because we’re not doing this for each other; we’re doing it for a much bigger cause–something much bigger than any one of us.”

How Others Can Help

“It’s a long process. So there are different phases to this project. During the first phase, it’s really awareness, becoming involved, and giving support by following the project and telling people about it, getting the word out about what this actually is.

“We need seed money to get the first phase underway. That phase consists of a feasibility study and for the theater project consultants to outline the structure. In my mind, it’s hypocritical to say, ‘Oh, we’re going to build a performing arts center to help these kids in Newtown, but they can’t use it for another 5 years.’ So what’s going to happen to these kids over the next 5 years? It’s not about the venue per se. So you don’t shut the door until this thing is done, [and] that 5 year old is now 10. So what we’re going to do is continue these programs and productions to have people get involved. They can come to the show [Seussical] and support these kids.

“The performing arts is an interaction between the performers and the audience. There’s applause; there’s laughter. You, the audience, become part of the performance and share time and support these children and young adults. They’re rehearsing from 9 to 6 on some days, 6 days a week for 5 weeks. There are 86 kids performing, and there are 20 apprenticeships. So there are kids who may want to be a director or a choreographer or possibly a stage designer or a costume designer or in lighting. So these New York City professionals are joining up with the kids even on the production side too, because it’s about getting involved, it’s about the process.

Appearance on FOX CT, “Suessical” Comes to Newtown, CT

“It has to be at the highest level for multiple different reasons. Because one, why are we doing this? We’re doing this in remembrance of these kids; doing something that’s less than the best that I and the organization can possibly give, anything less than that is unacceptable. We might not be able to get every single person in the world involved, but we’re going to fight to get the best, because there’s no reason that our kids don’t deserve the best in the world. That’s the bottom line.

“Seussical” the Musical in rehearsal

“It seems like when someone approaches me with an idea, the first question I have is, ‘Is this going to improve the lives of these kids?’ So if they can answer that question or if it’s ‘Oh, I don’t know, not really,’ then it’s not part of this. It can’t be bogged down by wasting time doing things that are not ultimately going to make their lives better and stay consistent with the vision. So that’s why it’s interesting: when I’m in a meeting with some of the best people in the world at what they do, invariably, they stop, and they ask, ‘Does this make sense with what we’re trying to do here?’”

“…When someone approaches me with an idea or a question, the first question I have is, ‘Is this going to improve the lives of these kids?”

A Global Impact

“The most important aspect of this is once again the focus on the kids, not only on the kids who survived this or in Newtown or in Connecticut, or in the country, but in the world. There was a fundamental loss of security, of trust, that was taken from so many people from this event. And again as a kid, it’s so important that you don’t forget about that and do not say,’ We’re just going to move on,’ because it will manifest itself at some other point in their lives, and it’s our responsibility; it’s not a choice to make. It’s a responsibility to be there for them at this time in a very meaningful, long-term way.

“So what you can do to help is to support the Foundation, support it with awareness, support it financially, support it with connections that you may have, people you know who may be able to help us accomplish the vision. Attend the events. This will not just trickle down to other people, it will be an avalanche: from Newtown, it will affect the world. So this is not just about Newtown, that’s what people need to understand.”

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Dr. Baroody,

Thank you for your dedication and drive, your compassion, and your passion — for your patients, for the children of Newtown, and for children everywhere.

~ Debra Madden, a grateful patient, a proud Newtownian, and a supporter of the 12.14 Foundation

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To support the 12.14 Foundation and to learn more about the upcoming “Seussical,” the Musical, and future events, please:

–> Visit their website at http://www.1214foundation.org

–> Like their Facebook Page at https://www.facebook.com/1214Foundation

–> Follow them on Twitter at https://twitter.com/1214foundation

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Seeing “Seussical, the Musical”: After the Show …

My husband and I had the pleasure of seeing “Seussical” last Saturday night, and I wanted to share as much of the experience as I can with you as a follow-up to my interview with Dr. Baroody above.

But quite honestly, it’s extremely difficult to put into words just how wonderful it was. As Dr. Baroody said during our conversation a few weeks ago, sometimes words simply aren’t enough. But I’m going to do my best.

The truth is that last Saturday’s performance truly wasn’t “simply” a musical. From the moment that Dr. Baroody stepped on stage to introduce the show, the audience seemed to become one with the performers. We weren’t sitting in our chairs and watching from afar: we were so vested in the performance that we all became a part of it ourselves. These children and young adults were not solely talented actors and actresses: for all of us in the audience, they were our children, our Newtownian children, part of our community’s family. And that first moment when dozens and dozens of young children ran out onto the stage, many as young as 5 years old, I doubt that there was a dry eye in the house: the music, the acting, the set, the costumes, the lights … the joy, the imagination, the months of hard work, the dedication, the mentoring, the new friendships, the making of new and wonderful memories, the magic that The 12.14 Foundation brought into these kids’ lives.

The show itself was moving from start to finish: it was sweet, funny, joyful, magical, and heartwarming. The leading actors and actresses were true talents, with beautiful powerful voices. To a person—or should I say to a “Who”—everyone on that stage, behind it, and up on the light towers—did a spectacular job. And seeing all those children–a total of 84 from ages 5 to 18–running on and off the stage, singing, dancing, jumping, twisting in sheer joy: it was better than any Broadway play I’ve ever seen.

And there was nearly as much action in the audience as on stage. We were laughing, applauding, whistling, shouting, and leaping to our feet. And many of us were wiping our eyes for most of the show.

We’re so proud of all the Newtown children and families who worked so hard and poured their hearts and souls into “Seussical,” this, the first of The 12.14 Foundation’s efforts. What started with Dr. Baroody’s vision is now the reality of The 12.14 Foundation: a remarkably special Foundation that has begun to bring healing, growth, unparalleled opportunities, and joy to Newtown’s children. And this is what our Newtown audience saw last Saturday night and why it’s something that most of us will certainly never forget.

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