Preserving Hope: Our Caregivers’ Journeys in the World of Cancer

Many folks might not understand this.  But I’ve lost track of how many times I’ve thanked God that I  and not one of my loved ones was the cancer patient.  After being diagnosed with lymphoma shortly after college, cancer shaped my life.  As I’ve said many times, being a cancer survivor has impacted every adult decision of my life: staying in a job that I disliked far too long due to fear of being without health insurance, my decision to become a medical writer, when to get married, and on and on.   But I’ve had to be matter-of-fact about this.  Cancer, its late effects, what seems like my bimonthly thyroid biopsies, the number of daily pills I’ll always have to take, my long list of specialists—it’s simply my reality.  But that’s okay.  Long ago, I subconsciously made this one of my roles: I took on the role of cancer patient, the one with the chronic health issues in my family, with the understanding—or perhaps more accurately stated, the magical thinking—that I gladly accept this role to protect any of my loved ones from EVER experiencing cancer, cardiac issues (another of my late effects), or any serious chronic health issue.  My message to myself was “I’ve got this.  I’ve got my family covered.”

Magical Thinking

My mother helped me to understand this at a more conscious level just last year, one which was  very difficult for my family.  I have two female first cousins, one on my mother’s side and one on my father’s side—and in one year, they both were diagnosed with stage 3 HER2+, ER+ breast cancer at the age of 49.  I was never angry about my own cancer diagnosis: the first time, my thought always was, “Well, why NOT me?,” and the second time I’d long understood that I had a greatly increased risk for breast cancer due to my radiation treatment as a young woman.  But when I learned that my first first-cousin had just been diagnosed, I was distraught and absolutely furious.  I literally screamed when I heard the news.  And when I learned a few months later that my second first-cousin had been diagnosed as well, my anger and distress were even blacker and deeper.  I couldn’t understand my reaction, and I pushed it down deep, because it was critical to me to be strong for my cousins and able to have my “advocate hat” firmly in place to provide all the possible information, resources, and support I could for them both.  But in talking with my mother one day, I shared with her how deeply furious I was that they were both going through this and how confused I was about feeling this way.   She said that she had the answer, asking “You don’t remember what you said to me, do you?”  Of course, I’m notorious among my family for not remembering anything (thank you, “chemobrain” parts 1 and 2), so we chuckled over that.  She then explained that shortly after my breast cancer diagnosis, she’d asked me why I wasn’t angry about being diagnosed now for a second time.  And she reminded me of my answer: “You said that as awful as it was, you knew you’d get through it, and you weren’t at all angry because, after all, that must mean that you had the family covered.”

Downcast

And that’s true: I continue to pray every day that that’s IT—that cancer has learned now who’s boss and will not DARE touch another of my loved ones.  This may explain why I was so struck by something a fellow cancer survivor and advocate said during a panel discussion last year, where we were both participating as Patient Advocate Fellows during the Drug Information Association (DIA) annual meeting.  When my new friend and colleague, Deborah Cornwall, began her portion of our panel’s presentation, she explained that she was a breast cancer survivor, but that her own “brush with cancer was trivial” compared to the caregiver and patient stories she’d had the honor of hearing while working on her recent book, “Things I Wish I’d Known: Cancer Caregivers Speak Out.”  She explained that although there were so many books for the cancer patient, as there should be, there were very few for the cancer caregivers–for the spouses, the parents, the children, the siblings.  As Deborah discussed her book, its purpose, and the meaning that it had for her and the many caregivers she interviewed, I was deeply moved, thinking about just how important this book was—that in addition to the patients themselves, it’s just as critical that the loved ones who are caring for them receive the support they need and how cancer also turns their worlds upside down.

A few weeks following the conference, Deborah graciously agreed to an interview, during which I asked her about the genesis of her book, any critical overarching themes that arose while speaking with the caregivers, and the experience itself of speaking with so many people about what was often the most heartbreaking time of their lives.  Following is some of the conversation that Deborah and I had, including several quotes from Deborah and the caregivers themselves.

Cancer Caregivers Speak Out

“Why do people love firemen? People love firemen because when everyone else is running out of a burning building, they’re running in.  It’s easier to run away.  Caregivers are running into the burning building…”

~Chuck’s Mother

In the introduction of Deborah’s book, she shares the following, describing the beginning of the caregiver journey:

“Most caregivers describe their reactions to a loved one’s cancer diagnosis in violent terms: a fast-moving or violent physical assault, a punch in the stomach, a car hitting a deep pothole at high speed, a hijacking, an earthquake, a lightning strike, or a vicious animal bite.  A few mentioned a sensation of being frozen and unable to move, or feeling as though a rug had been pulled out from under them.

“If you have been suddenly thrust into the caregiver’s role, you may have experienced similar sensations when a loved one or close friend received the cancer diagnosis.  There’s so much information coming from all directions that you may feel overwhelmed, angry, or bewildered. ‘Normal’ has just disappeared from your life.  You may be fantasizing that you’ll wake up tomorrow and find out that this was all a bad dream.  You may even feel resentful: After all, you didn’t sign up to set your own life aside to become a caregiver.

“Your emotions are real, and confronting them is the first step in coming to grips with your caregiver role.  You’re probably wondering how this unexpected journey will go, and how it will end.  You may be looking for support, guidance, or help—perhaps for the first time in your life—at the same time that you’re uncertain where to look, or even what to ask for.

“That’s another reason why I’ve written this book.”

“In reading about the key issues you’re likely to face and what others did when encountering similar situations, you’ll have the opportunity to learn from their approaches and use them in creating your own solutions to your unique caregiving challenges.  While this book won’t serve as a complete ‘how-to’ guide or steer you to every resource you might need—caregiving often requires invention under pressure—it will provide guidance and build your confidence in inventing your own way.

“I was honored that the people I interviewed chose to share their stories and life lessons.  Their candor and intimacy were unexpected gifts that enriched my life immeasurably and made this book a reality.  In turn, I share their reflections with you in the belief that they will help you on your journey.  Their hard-earned insights, their indomitable hope, and their desire to help others to stay focused in the face of adversity represent their way of giving something back to those who helped them.”

~Deborah Cornwall, Marshfield, Massachusetts, 2012

~~~~~~~~~~~~~

Our interview began with Deborah’s sharing how “Things I Wish I’d Known” came to be:

“Writing a book of some sort actually came from my aunt, who is 95 years old now.  So she was about 91 when the idea came up.  I was talking with her about various experiences that I had had at Hope Lodge, [which provides] free lodging for cancer patients and their caregivers who come in from more than 30 miles away for regular care for cancer treatment…I had been involved on the American Cancer Society Board of Directors in New England when we decided to build the [Hope Lodge in] Boston.  I kind of adopted it personally.  My husband and I would go there periodically to serve holiday meals, because our daughter lives elsewhere and can’t always be with us.  While there, I would always meet people whose stories were just amazing and far more dramatic than my own.  Afterward, I would share them with my elderly aunt on the telephone.  Then one day, she said, “You have got to write a book” … I kind of pooh-poohed it, because your relatives always believe you can do anything.  But a few weeks later, after the idea had had time to germinate,  I realized she was right.”

Hope LodgeIn thinking about the shape that the book would take, Deborah realized that there were few books that specifically focused on the stories of the cancer caregivers, how they coped, what resources were most helpful to them, and, upon reflection, what they wished they had known beforehand but learned only in the midst of their experiences as a caregiver.  So that is the book that she wanted to create.  Deborah noted, “That’s when I charged off on my own and said, ‘Okay, I need to find people who are willing to talk to me.’  She explained that with HIPAA (the Health Insurance Portability and Accountability Act) privacy regulations, “that’s a bit tricky.  So I needed to spread information out in the right places and let people know how to contact me if they were interested in talking about their experiences.”

ConnectionsDeborah stressed that the sourcing of interviewees was itself a fascinating process.  “I think the most interesting piece of it was that in addition to posting invitations at several of the Hope Lodges, I would also send out waves of emails to groups of my own contacts,  asking them to spread the word.  I got a phone call one day from a woman who had received my email, which I’d sent to someone out of state, who forwarded it to somebody else in another state, who in turn forwarded it to the woman who called me.  It turned out that on the third forwarding, it went to [this woman] who lives five minutes from my house!  Isn’t that bizarre?  So there are all sorts of fascinating procurement stories in terms of finding these people.”  Deborah went on to share another example of such serendipitous connections: “I received a phone call from a woman who had just lost her husband.  [She’d been] in a park walking with her daughter and newborn son, and a friend of mine happened to be passing through that city when they met and created the connection.  This woman has sustained our relationship and become a good friend. There were all sorts of really random types of connections, but essentially, when I got to 86—and there was nothing magic in the number–I thought to myself that I’m hearing the same things frequently enough that I believe I have enough to work on.  So that was the genesis.” In the second edition of the book, Deborah added another nine conversations focused on healing, bringing the total to 95.

Deborah emphasized how moved she was that so many caregivers were willing to speak with her for her book.  “I was stunned at how eager people were to talk and how much they wanted to share with me, usually as a complete stranger.  Two-thirds to three-quarters of the caregivers were complete strangers with not even a personal referral connection, not even a mutual friend . It was really stunning to me how eager they were to pour out their most intimate life stories.  And what it said to me once I got going was just how important they thought the book could be.”  She also noted that during their caregiving experiences, “some of these caregivers were deserted by people they thought they were close to.  So I think that in some ways, that made them want to talk about it more, because family members or friends didn’t know what to say and didn’t know how to have a conversation about what the caregivers were going through.  In a way, to talk to a stranger who really wanted to know what happened was nourishing to them.  After one particularly moving conversation, one interviewee said he felt better because it felt as though he’d just been to therapy.  It had presented the opportunity to voice things that he’d kept inside since his wife had died. I think that the interviews did allow people to get in touch with how they had really navigated the experience when maybe they really hadn’t had the opportunity to reflect on it before.”

In fact, folks were so open to speaking with Deborah about their caregiving experiences that her first interview for the book occurred even before she thought she was prepared.  “My first interview was with a woman I’d known for years who was on the staff of the American Cancer Society.  Just before a scheduled meeting started, I [mentioned] to her that I was writing a book on caregivers. Her immediate response was, ‘Oh, I’m a caregiver.  Talk with me!  I have time right after the meeting is over.’   My first thought was, ‘So soon? I haven’t even finished the interview guide yet!,’ but I did it.  Her story was a rich one. She had been the primary caregiver for her father, who was dying of cancer, and at the same time for her mother, who was having a nervous breakdown. My friend was a single mother of two young children, she had two siblings who were uninvolved, and she was trying to work at the same time.  At one point, I asked her, ‘Where were your siblings?  Did they ever ask how you were doing during this whole process?’  It took her several minutes to respond. Then she looked at me with these wide deer-in-the-headlight eyes, and all of a sudden, tears started rolling down her face.  That’s when I realized that I was on to something really important.”

Deborah shared that when she completed and submitted the initial draft to her professional editor, his feedback was positive, yet she was taken aback when he stressed that, ‘It’s only twice as long as it can afford to be to get read.’  She stressed that pruning down the stories she shared was an extremely emotional process for her, because “I feel like I still carry their stories with me all the time.  They shared so much of themselves that I really felt that I owed them to tell their stories.”

Overarching Themes Expressed by Caregivers

When I asked Deborah whether any themes emerged when speaking with family caregivers, she noted that there were several:

“Yes, the first was control, a theme that really permeated every conversation:  the feeling of loss of control.  As you grow up, you develop a profession, you buy a house, you get married, and somehow you start believing that you actually have some control over your life.  Then, all of a sudden, when you’re told that you or a loved one has cancer, that sense of control is gone.  That theme was particularly significant for some of the male caregivers.  I had a couple of them who described themselves as control freaks who had to learn to let go of the fiction that they had any control.

“The second theme was the need to somehow preserve hope and, even for those who were told that they were in very dire straits, to see their situation in a more positive light.  When one was told that x percentage of people only survive a certain period of time, she and her husband said, ‘Fine:  we’ll be in the other percent.’  Even if it was a mind game, these caregivers found some way to create some hope in the situation, but also to make sure that today was a joyful day, that there was something today that I could do to help the person not just get through the day, but really enjoy the day.  And for many of them, that was hard.  But you know, there were several stories of people dying at home, where even the death experience was turned into something that would feel positive and in their control, as opposed to being in a hospital, where you couldn’t control who was coming in and giving you shots and doing all sorts of things.

“The third theme was isolation–the feeling that so many of the caregivers had of being cut off from the people they used to see often. I called those people ‘pull-aways,’ the friends who didn’t know what to say or do, and so didn’t talk about it or didn’t make contact as they might have back before the cancer diagnosis.  And there were some situations where the patient was too sick to go out, and so the caregiver’s solution for overcoming isolation was to invite friends in, but to be very clear about when it was time for them to go.  The caregiving experience changed caregivers’ social patterns, but they really felt its absence unless they invented new ways to interact with friends.

“[Another important] piece was normalcy.  People wanted so badly to get back to normal, and yet there was never going to be a normal again. Maybe a new normal would evolve, but life would never go back to the pre-cancer world.”

Deborah also noted that when reflecting on their experiences as caregivers, “All noted that their caregiving had enriched their lives.  It really did.  And I was really surprised when I asked them, ‘How are you different?’ I just didn’t know what I was going to hear.  It was encouraging and also really striking how many of them engaged in an activity that will in some way give meaning to their caregiving experience, particularly if their loved one died.  Even though this matched my own experience, I didn’t realize just how widespread that giving-back phenomenon would be.  Sometimes it’s focused on a specific type of cancer, such as leukemia or lymphoma.  Sometimes people actually created a new foundation, like two caregiving families living next door to one another who together created a brain tumor organization to benefit a local hospital, for example.  It’s fascinating to hear the creativity people use in determining how to get involved and how they want their loved one either to be honored or remembered.”

I asked Deborah if hearing such emotionally trying, heartfelt stories was ever difficult for her both as an interviewer and as a cancer survivor herself.  She agreed that it was:  “A couple of times, I did break up on the phone, and I apologized.  But I found it didn’t matter to the interviewee.  In fact, it revealed that I cared.  I always felt self-conscious about it, but it turned out to be okay.  To have them talking about the last minutes of somebody’s life and to be able to do so in such a loving and really clear descriptive way, it was hard to imagine putting myself in their shoes and being able to have gone through what they experienced with as much grace.  They really all gave a tremendous gift to me and to anyone who reads the book, because of the raw emotions that they shared.  Equally riveting were their descriptions of their lives afterwards and how they have healed.  I’ve actually written an article about healing and added some of these insights into the second edition of the book, because I think it’s really helpful to those who are still going through the process.”

Starting the Healing Before the Caregiving is Over 

“One of the important things I learned was that people who do it well start the healing process before the caregiving is over,” Deborah stressed.  “And in fact, in some cases, the patient actually helps start that process.  One young man whose mother died described one of her last days, [when she gave] him instructions about how she wanted to be buried.  She asked him to make sure that she was wearing nothing but her full-length mink coat and red high heels!  And that’s what he did.  He can still laugh now when he talks about it, because it was such a funny funny request and reflected so much about her personality.  The other thing she had done that was so fascinating: as an experienced oncology nurse, she surrounded him with many of her nurse friends, so that if he ever had any questions as she was going through treatment, he had this network that could be a safety net for him.  There were several examples of patients who had done something like that.  It turned out to be really important to each caregiver’s healing later.”

The Keys

I couldn’t let Deborah go without asking her about the cover design for her book.  As shown below, the cover displays three large, antique keys that immediately grab the eye.  She explained that “I’d looked at several alternatives, [but] this was the one that struck me.  I think that the keys have meaning in the sense that … it’s almost like there are trap doors throughout the caregiving process.  And knowing what door to open and which key to use, it was almost an analogy of finding answers–‘What’s behind this door? What’s behind that door?’ There are hidden things that you need to find out behind each door.  The key design was really the message of the book and the best way to show it.  Somehow it spoke to me.”

Things I Wish I Knew

Messages from the Caregivers

What better way to conclude than sharing the words of some of the caregivers from “Things I Wish I’d Known: Cancer Caregivers Speak Out”?

“Professional caregivers don’t experience the emotional ups and downs that a family caregiver does.  The family caregiver truly bears the brunt to support the patient in the right ways, not too much or too little.  It’s critical for the patient’s progress.”

~Ellen M, registered nurse and cancer survivor, sharing her perspective on the role of her husband as  caregiver

“Caregivers have a difficult emotional time.  They don’t face the daily adrenaline surge that the patient does, but they have to pick up the pieces when things aren’t going well.  It’s hard for them to know when to reach in and when not to.  They walk a tightrope between letting the patient be in control and being able to take care of them without letting their loved one feel incapacitated.  Caregivers haven’t experienced the physical pain, but they also can’t make it go away.  The caregiver has to be strong, but not overpowering; sympathetic and optimistic, but not saccharine; realistic but not discouraging; upbeat but not inappropriately happy.”

~ Bobbi, long-time breast cancer survivor, articulating the challenge of caregiving

“There’s no better way to learn about dealing with cancer as a caregiver than hearing other people’s stories.”

~ Debbie B’s husband

~~~~~~~~~~~~~~~~~~~

The Book

Interested readers can locate Deborah’s book in paperback or electronic forms at the following websites:

“Things I Wish I’d Known: Cancer Caregivers Speak Out”

Amazon.com

Barnes & Noble

“A New Layer of Pain” for Our Newtown Community

This morning began with a very upsetting bit of news.  I’d been mercifully away from the U.S. news for a few days, having been in England.  As a cancer research advocate, I’d had the honor of serving as a panel speaker during a joint European Medicine Agency (EMA)/Clinical Trials Transformation Initiative (CTTI) session in London. ( But more on that in a future blog …)

While I was away, it turned out that we also had trouble with our cable TV.  So this morning, while still bleary-eyed from jet lag, I talked to the cable company, managed to get the snafu resolved without too much frustration, and then turned on the TV to catch up with the news while having my morning coffee … and was immediately upset by the very first news item I heard.  Like many of you, I suspect, I find most of today’s news infuriating, sad, or tragic.  But this news item was personally upsetting to me and undoubtedly to many in my Newtown community:  I learned that the Sandy Hook 911 tapes were released today, following a ruling by a Connecticut state judge:  i.e., just 10 days before the “one-year anniversary” of the tragic events that occurred here in Newtown on December 14, 2012.   And the fact is that most of us here have been absolutely dreading the arrival of 12/14, fearing the repeated onslaught of media, the horrifying memories that remain all too raw, and the renewed grief for all those who have been irrevocably affected by this terrible tragedy.

I almost always agree with the sentiments of Newtown’s First Selectman, Pat Llodra–and that’s the case once again.  In response to the news that the tapes were being released today, she stated that this would only serve “to create a new layer of pain for many in the Newtown community.”   Some folks throughout the country have argued that releasing the tapes to the AP would be a matter for the “public good.”  And the judge who ruled to release the tapes noted that doing so could help by “showing the professionalism of the first responders and pointing to anything that might be done differently in future emergencies.”  But my own response to that is, Was the professionalism of the first responders ever in doubt?  If so, I’d find that absolutely shocking, since to a person, I’ve heard nothing but a world of respect, awe, and admiration for the first responders who served the people of Newtown and Sandy Hook that day.  And “what might be done differently”--or, said another way, what should be changed?  The official investigation examined these questions up, down, and sideways, as it should have: those few questions that could be answered were, and the investigation is now closed.  And most would agree that following the events of that terrible day, in pondering the imponderable, our towns, cities, states, and federal government–our society overall–has already been profoundly changed in countless ways (for better or worse or both?), whether looking at the subject and tenor of our ongoing national conversation on violence, increased spending in the last year on mental health in most states and implementation of measures to make treatment more accessible for children and adults with mental illness, additional security changes put into place, new gun-control legislation proposed, and on and on and on.

Judge Eliot Prescott

New Britain, CT Superior Court Judge, Eliot Prescott, Rules That He “Will Listen to Sandy Hook 911 Recordings”

So what is there to gain by listening to these horrific events as they unfold, by graphically hearing the very voices of those who lived–or tragically, did not live–through them?  As a Newtown resident who loves my community, I would argue, Nothing, except for renewed pain and heartbreak.

To read the eloquent words of Pat Llodra in response to the release of the 911 tapes, simply click here:  PERSONAL REACTION TO THE RELEASE OF THE 911 TAPES – December 4, 2013; Pat’s Blog: One Newtown.

Moving Us Forward

Before the 911 tapes were released, Pat reflected on how those in our Newtown community will be handling the arrival of December 14th: “Our community is choosing to remember and honor those who lost their lives in that awful tragedy in ways that are quiet, personal and respectful — centered on the themes of kindness, love and service to others.”   My hope is that everyone will understand and honor Pat’s thoughts and wishes for our Newtown community.

On the Meaning of Birthdays to a Cancer Survivor (aka “My first 49th?”)

When I was growing up, birthdays were always of tremendous significance in my family.  My sister and I both looked forward to our own special days all year: we loved the presents, the attention, the parties, everything about it.  But maybe most of all, we loved the excitement of finally seeing the theme my mother chose for our birthday cakes.  She always made complex cakes of her own special design, and she outdid herself every year.  We still talk about the most memorable one: the “Bucky Dent” cake, designed to look like my sister’s large blue, buck-toothed stuffed rabbit that she’d named in honor of the (very!) handsome Yankee short stop.  As a kid, I also loved that my birthday came just a few days before Halloween.  I was a painfully shy little girl, but I loved dressing up to be someone (or something) else, the spookiness of it all, seeing all the other kids’ costumes in the neighborhood, and eating far too much candy for several days.

Celebrating my 4th birthday with family and friends

But I figured that when I “grew up,” birthdays would become just another day.  And that’s definitely the case for my husband.  As one of 9 kids in an Irish-Catholic family, his parents (understandably!) didn’t have the time or energy for big birthday celebrations, particularly by the time Marty arrived (the 8th child and youngest boy).  He does reminisce about how his mother would let the kids choose their favorite meals for their birthday dinners and how that was always such a treat.  But now he encourages me NOT to get him anything for his birthday (I don’t listen) and, last year for his 50th, NOT to do anything, let alone anything special (I didn’t listen).  And just this week, when I asked if he minded that I’d be attending a grant review panel on the day of his birthday, he started laughing … “Oh my God, Deb: I’d be absolutely devastated! “Nuf said. :-)

But the fact is that every year when the calendar reaches October 27th again, I take time to reflect–and to appreciate just how fortunate I am to BE here.  Most young adults still have at least a residual sense of invulnerability that’s hung on from childhood and adolescence:  from simply not understanding the concept of death to not being able to comprehend one’s own death, a feeling that death “can’t happen to me.”  Yet at the age of 22 years, I lost my sense of invulnerability for a lifetime.  It literally was a black-and-white moment, during which my childhood doctor and I were looking at my chest x-ray, showing one lung that appeared black (as it should have) and the other covered entirely in a frosty white.  The cause, stage III Hodgkin’s lymphoma–a diagnosis that if received just a decade before may very well have meant that I wouldn’t be celebrating many more birthdays.

And on Halloween night this year, my memories returned of another moment that similarly divided time for me.  Exactly 10 years ago, 4 days after my 39th birthday, I learned that I was facing the real possibility of not being here to celebrate my 40th.  On that Halloween day in 2003, I was walking up the stairs to my new cardiologist’s office, fighting the pain gripping my chest and stopping every few seconds to catch my breath. Once I reached the office, I carefully settled myself into a chair in the waiting room and watched in a daze as members of the office staff went about their business, all while dressed in Halloween costumes.  Normally, I would have gotten a kick out of that.  But not on that day.  I was still trying to catch my breath when the technician who had performed my cardiac testing walked right over to me, put her hand on my shoulder, leaned over, and asked if I was okay.  She then clasped my arm warmly, smiled, and went to her next patient. She was in costume as well, a frightening one actually, but the fact that she obviously recognized my fear, comforted me, yet didn’t say, “don’t worry; everything is going to be fine”–that was one of the scariest moments of my life. And it wasn’t fine.  Instead, I learned that I had 90% blockage of one of my coronary arteries.  The cause: scarring and narrowing caused by my radiation treatment for lymphoma several years before.  And, as I’ve written about previously, because of the location of the blockage, I faced a terrifying decision–whether to proceed with an angioplasty, which presented the risk of another coronary artery collapsing and a heart attack during the procedure, or whether to go right to open-heart surgery for a coronary artery bypass graft.  When I later found myself asking the cardiologist whether I should be thinking about “getting my affairs in order,” I was shocked on so many levels: that I was actually asking this question, how truly surreal the situation was, and worst of all, to hear that the answer was “Yes.”

As a young adult cancer survivor (AYA), I know that the reality is a stark one for far too many of us.  According to the National Cancer Institute (NCI), unlike overall improvements seen with older adults and younger children, the survival rates for young adults with cancer have not improved in nearly 30 years. The lack of improved outcomes can be due to a number of factors, including delayed diagnosis (since many MDs may rarely consider the diagnosis of cancer in a young adult), lack of health insurance and limited access to medical care, receipt of treatment that may not be most effective for their cancers due to limited understanding of the biology and etiology of cancers in AYAs, and the unique supportive and psychosocial care needs that come with such a diagnosis at the juncture between adolescence and adulthood.  And of course, there’s the fact that AYAs face a substantial risk of developing serious late effects of their cancer treatment, including cardiotoxicity and second primary cancers–which, in my case, includes my breast cancer diagnosis at the age of 42 years, also thought to be secondary to my radiation).

So coming full circle, although it may seem childish, I treasure my birthdays because I’ve been given the gift of still being here.  This year’s was my 49th–and next year, I won’t be describing it as my “second” 49th.  I’ll be thrilled that I’m here for 50 and for every day before and after.

October 13th, Making Awareness Meaningful with National Metastatic Breast Cancer Awareness Day

Today is October 13th, the 286th day of the year, a day in history when the first electron micrograph was taken of the deadly Ebola virus (1975), when Jordan joined the Yom Kippur War (1973), and when the rock legend Neil Young had throat surgery (1975).  To my mind, this day in history is actually one of the most important on the calendar—because in 2009, it was designated as “National Metastatic Breast Cancer Awareness Day” by the U.S. House and Senate, thanks to the dedication and passion of the Metastatic Breast Cancer Network (MBCN)’s legislative advocacy team.

National Metastatic Breast Cancer Awareness Day Proclamation

The purpose: to draw attention to the unique and often unmet needs of the women and men in the United States who are living with metastatic breast cancer.  As noted by Dr. William Gradishar, Northwestern University Feinberg School of Medicine, on the Metastatic Breast Cancer Network’s website, “While there is no cure for metastatic breast cancer, some individuals are able to live longer with the disease.  However, metastatic breast cancer remains a clinical challenge in the oncology community.  October 13 places emphasis on the disease stressing the need for new, targeted treatments that will help prolong life.”

National Metastatic Breast Cancer Awareness Day

This day provides a critical opportunity to clear the misconceptions that far too many people have about breast cancer.  First and foremost, do you remember when 2012 Congressional candidate Chris Collins of NY was quoted as saying, “People now don’t die from prostate cancer, breast cancer and some of the other things”?  Yes, he really said that.  But as atrocious as this was, the sad truth is that some folks do believe this—and worse, some essentially blame the patients themselves with metastatic disease, particularly those with breast cancer, thinking, “She must not have gone for her mammograms.”  To which I say, “wrong and wrong: wrong, wrong, wrong!!!”  The truth is that despite increased use and access to mammograms and some treatment advances, approximately 40,000 Americans die from metastatic breast cancer every year.  And despite earlier and earlier diagnosis of ductal carcinoma in situ (DCIS), also known as “stage 0,” precancerous, or preinvasive breast cancer, the incidence of metastatic disease has not significantly declined.  Another truth: Mammography screening does NOT prevent nor cure breast cancer, but we do know that it can lead to overdiagnosis and overtreatment.  And yet another truth: Not all breast cancers are the same.  Some breast cancers are extremely aggressive, growing and spreading rapidly, and may not be effectively detected with screening mammograms.  Others are more slow-growing and may be more easily found on mammography, yet may never have become invasive or life-threatening.  Rather, there are many different forms of breast cancer, based on the biology of the tumors and the microenvironment surrounding the tumors—with each subtype having a different prognosis and responding differently to specific forms of treatment.

MBC Awareness

National Metastatic Breast Cancer Awareness Day promotes the type of awareness that is truly meaningful–by pushing aside all the pink ribbons (and pink blenders, guns, oil delivery trucks, and …) and revealing the important truths behind the pink curtain.  So today, as my way of honoring all of those affected by metastatic breast cancer, I encourage you to:

* Read The 31 Truths About Breast Cancer, one truth for every day of October

* Read “Thirteen Things Everyone Should Know About Metastatic Breast Cancer”

* Help to increase awareness of the truths that matter by:

Sharing the 2 links above with your family, friends, and colleagues.

Sharing the MBCN’s “Grow Awareness. Share Support. Metastatic Breast Cancer Awareness” page on your Facebook page, your Twitter account, and your Pinterest page.  Every time you do so, AstraZeneca will make a donation to two metastatic breast cancer advocacy groups: Living Beyond Breast Cancer and the Metastatic Breast Cancer Network.

Grow Awareness of Metastatic Breast Cancer

* Visit the websites for the Metastatic Breast Cancer Network, Living Beyond Breast Cancer, AdvancedBC.org, BrainMetsBC.org, and the new Metastatic Breast Cancer AllianceAnd please share information and links on my blog concerning additional organizations that are dedicated to the unique needs of women and men with metastatic breast cancer.

And please help me honor:

* the so many wonderful women and men we’ve lost to metastatic breast cancer,

* the far too many of my beloved friends and the tens of thousands in the U.S. and more across the world who are living with metastatic disease,

* and all those who are dedicating their lives to supporting women and men with metastatic breast cancer and who are tirelessly working to find the causes, enhanced treatments, and cure.

A Historic Moment: First Pre-Surgical Drug Approved for High-Risk Breast Cancer

As far too many of us know, a diagnosis of breast cancer is shattering, frightening, overwhelming … a maelstrom of one emotion after another.   And while trying to come to terms with this life-altering diagnosis, many of us have found that we’re confronting a new language where pathologic terms and molecular subclasses, the biology and behavior of our breast cancer, are driving our treatment options, our choices, our prognoses.

Shortly before I learned that I had breast cancer in 2007, patients diagnosed with what is known as HER2+ breast cancer were told that their cancers were very aggressive and that their prognoses were poor.  Normally, the protein known as “HER2,” a receptor on breast cells, helps to control breast cell growth, division, and repair.  But in those with HER2+ breast cancer, more than the two copies of the HER2 gene may be present, leading to overproduction of the receptors on the cell’s surface, HER2+ overexpression, and uncontrolled breast cell division and growth.  The day that I finally gained the courage to read my pathology report after my surgery, I was aware of this–that HER2+ breast cancers were considered more aggressive, tended to grow and spread more rapidly, and were less responsive to certain therapies when compared to other breast cancer subtypes.   And though I already knew that my tumor was found to be estrogen-receptor positive (ER+), I didn’t yet know my HER2/neu status.  Either that conversation with my surgeons had taken place during the drug-induced haze immediately following my surgery, or it hadn’t happened yet.

HER2+ breast cancer, Perjeta Patient Information, Genentech

As I turned the pages of my pathology report, I registered that the estrogen receptors were 62%–and that a higher percentage would have been considered “better,” but that this was still considered “good” prognostically.  When I saw 0% for progesterone receptors, I recognized that that actually wasn’t so “good”:  after all, it was labeled right there on the report as of “unfavorable prognostic significance.”  But it was the next line that I was most nervous about:  and there it was, my HER2/neu status … and it was “Negative.”

When I saw this, I did feel something akin to relief—though as I learned not long after, there is nothing clear-cut about breast cancer.  On that January afternoon in 2007, should my tumor’s HER2 status have been positive, I actually would have been in a much better position than women diagnosed just a few short years before my own diagnosis.  The fact was that recent advances had offered a critical new treatment option for patients with HER2+ breast cancer.  Just 2 months before, in November of 2006, trastuzumab (Herceptin®), a targeted biologic therapy, had been approved in the postsurgical (adjuvant) setting for early-stage HER2+ breast cancer (BC).   I was correct in my understanding that HER2+ disease is a particularly aggressive form of BC—and that because of the aggressiveness of breast cancers that overexpress the HER2 protein, patients with HER2+ disease have an increased risk of recurrence and decreased survival compared to those with HER2-negative disease.   But the development and approval of trastuzumab was truly a dramatic breakthrough for the treatment of HER2+ BC, both in reducing recurrence risk for those with early disease and increasing overall survival for patients with metastatic disease.  In fact, when the combined results of the adjuvant BC trials were presented during the American Society of Clinical Oncology (ASCO)’s 2005 Annual Meeting, the audience greeted the news with thunderous applause and a prolonged standing ovation.

Those who jumped to their feet when hearing the news about trastuzumab recognized this targeted therapy for the critical breakthrough that it was, one that has since changed the natural history of early HER2+ BC.  And yet …

Though trastuzumab and other targeted therapies since approved for breast cancer–and other cancers– have led to remarkable improvements in response to treatment and survival for some, resistance to targeted treatment, both intrinsic and acquired, has limited efficacy for others and is now a clear, sobering reality.   The upsetting truth: studies have also reported that depending on tumor characteristics and stage, 17 to 40% of patients treated with trastuzumab regiments for early-stage HER2+ BC go on to develop recurrences within 5 years.   Said another way, despite the fact that trastuzumab heralded a new era in the treatment of HER2+ BC, there remains a critical unmet medical need for preventing recurrence after treatment for early-stage HER2+ disease—and for preventing the approximately 6,000 to 8,000 deaths due to HER2+ metastatic disease every year in this country.  Accordingly, there also remains a need to expedite the development, study, and approval of safe, highly effective therapies for patients with high-risk early breast cancer.  And it is for this reason that the FDA released a draft guideline in May 2012 outlining an Accelerated Approval pathway for presurgical (neoadjuvant) treatments in breast cancer.

But why then the title above, “A Historic Moment”?  Last month, on Thursday, September 12th , the FDA convened its Oncologic Drugs Advisory Committee (ODAC), asking ODAC for the first time to consider Accelerated Approval for an oncologic agent in the neoadjuvant setting, based on a primary endpoint known as “pathologic complete response” (pCR).”  Pathologic complete response is proposed as a “surrogate endpoint” of tumor response that should be strongly correlated with more traditional endpoints, such as disease-free survival or overall survival.  In other words, if approved, this would be the first neoadjuvant regimen formally approved by the FDA for any type of cancer.

During this September 12th ODAC Panel, I had the privilege of serving as the Patient Representative as a temporary full voting member.  The question before the committee specifically concerned Accelerated Approval of the anti-HER2 therapy pertuzumab (Perjeta) in combination with trastuzumab (Herceptin) and docetaxel (Taxotere) for patients with HER2+ breast cancer in the neoadjuvant setting.   Like trastuzumab, pertuzumab is a monoclonal antibody that targets the HER2 receptor, yet it binds to a different part of the HER2 molecule and therefore does not compete with trastuzumab.   Pertuzumab prevents the pairing (called “dimerization”) of HER2 with other HER receptors (HER1, HER3, and HER4), serving to block the signaling pathways within the cell that lead to tumor growth.  When pertuzumab is combined with trastuzumab, it therefore provides a “dual” or more complete blockage of the HER pathway.

ODAC meeting at White Oak Campus

Approving an oncologic agent as a neoadjuvant therapy in early-stage disease would be historic since traditionally, new breast cancer drugs have first been approved in the setting of metastatic disease. Typically, approval for the treatment of early-stage BC then follows several years later based on the results of very large randomized postsurgical (adjuvant) trials with thousands of patients and prolonged follow-up.   If successful, neoadjuvant trials may therefore enable more rapid assessment of drug efficacy and expedite the approval of treatments for early breast cancer.

During this ODAC panel, the comprehensive discussion focused on several critical topics, including:

* the remaining unmet medical need for high-risk early HER2+ breast cancer and the far too many patients who have their cancer return as metastatic disease

* considerations regarding the use of pathologic complete response (pCR) as a primary endpoint in the neoadjuvant setting

* potential long-term toxicities associated with the neoadjuvant use of pertuzumab

* the need for very clear labeling to provide clear guidelines on proper patient selection (due to some data suggesting increased risk of cardiotoxicity) and the safest, most effective use of pertuzumab

*  the unique circumstances concerning pertuzumab, including its earlier approval as a first-line treatment for metastatic HER2+ BC based on statistically significant improvement in overall survival and its well-studied mechanism of action with the HER2 pathway and safety signals

* the need to consider the totality of the evidence concerning this agent

* the ongoing, now fully accrued APHINITY Phase III adjuvant trial that, if successful, could support conversion of accelerated approval to regular approval

On this last topic, many ODAC panel members stressed a critical point to the sponsor:  that if the results of the APHINITY adjuvant trial are in fact negative, Genentech should voluntarily remove the drug for the neoadjuvant treatment of early-stage breast cancer

During the public hearing portion of the session, many members of the public, including advocates, breast cancer survivors, and nonprofit advocacy organization leadership eloquently stressed the need for earlier, evidence-based treatment options and for treatments that may potentially prevent early high-risk HER2+ BC from later recurring, while also expressing the need for caution, urging Genentech to establish registries to follow those who receive pertuzumab specifically in the neoadjuvant setting for potential late toxicities.

Our panel ultimately voted 13-0 with one abstention in support of pertuzumab in combination with trastuzumab and doxetaxel for patients with HER2+ BC in the neoadjuvant setting.   And just a few weeks later, on September 30th, the FDA went on to approve pertuzumab in this setting, indeed making it the first FDA-approved pre-surgical breast cancer drug.

Perjeta (pertuzumab)

As stated by Dr. Mikkael Sekeres, ODAC Committee Chair, “This is a historic moment as we have voted to support the first approval of a drug for the neoadjuvant treatment of breast cancer: pertuzumab.  In doing so, we are supporting the rapid movement of a highly active drug for metastatic breast cancer to the first-line setting, with the hope that women with earlier stages of breast cancer will live longer and better.  We do this with some words of advice to Genentech.  All eyes will be on the confirmatory APHINITY trial and on you to verify this initial signal of efficacy and to confirm the bandwidth of safety that we have seen so far.  If these are not confirmed we urge you to avoid a repeat performance of Avastin and voluntarily remove this drug from the market.”

Upon announcing the approval of pertuzumab, Dr. Richard Pazdur, director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research, said in an FDA statement, “We are seeing a significant shift in the treatment paradigm for early stage breast cancer.  By making effective therapies available to high-risk patients in the earliest disease setting, we may delay or prevent cancer recurrences.’’

All eyes will indeed be on the large adjuvant APHINITY trial, with the hope that this was ultimately a critical first step in truly expediting the approval and availability of safe, highly effective treatments for patients with high-risk early BC and in significantly decreasing the risk of developing metastatic disease.

For patients with HER2+ breast cancer, whether newly diagnosed or long-term survivors, the HER2 Support Group provides information, resources, and support at http://her2support.org/.

The FDA’s Meeting Materials for the September 12, 2013 Meeting of the Oncologic Drugs Advisory Committee (ODAC) are available on the FDA’s website at http://tinyurl.com/bdsgot2

In addition, if you are interested in learning more about the FDA’s Patient Representative Program, visit http://www.fda.gov/forconsumers/byaudience/forpatientadvocates/patientinvolvement/ucm123858.htm.

Please note: The views expressed on these pages are mine alone and do not represent those of any other party.

On Self-Advocacy and Paying It Forward

This week, I’ve had the privilege of contributing a Guest Blog column for Jessie Gruman’s important series on “What I Wish I’d Known Earlier About Cancer Survivorship.”

This is a topic that resonates with anyone who has received a cancer diagnosis, regardless of age, cancer type, or stage.  And as a five-time cancer survivor herself, Jessie thought it important to share the many lessons she learned over the years concerning the unique needs of those who have been diagnosed with and treated for cancer.

Jessie is President and Founder of the Center for Advancing Health (CFAH), a nonpartisan, Washington-based policy institute that is committed to increasing patients’ engagement in their own healthcare.  The CFAH actively engages with and listens to patients and translates what they learn into resources that help all of us participate fully in our own healthcare and that enable clinicians and policy makers to better understand and meaningfully support these patient-centered efforts.

The Center’s website and its blog, called the “Prepared Patient,” are valuable resources for patients, family members, clinicians, policy makers, and all those concerned about ensuring optimal, evidence-based healthcare. Appropriately, the  CFAH’s motto is “Evidence, Engagement, Equity.”  

These 3 “E’s” form much of the core of my advocacy efforts, so as soon as I began reading the resources on the Center’s site, I was hooked.  And then, when I read about the new series that Jessie was establishing for the Center’s blog–one that so openly and honestly shared the hard-won lessons many of us have learned as cancer survivors–I immediately found myself writing part of my story, where I took my initial steps toward self-advocacy and on the critical road toward paying it forward.

I’ve reposted my blog for the series here.  But I also encourage you to link directly to this posting on the Prepared Patient blog, so that you’ll have the opportunity to also read the many other blogs that have been written for this important series and to learn more about the Center’s resources.

“Advocacy: The Road We Decide to Walk on Today”

Debra Madden

Road toward advocacyThis post was contributed in response to Jessie Gruman’s What I Wish I’d Known Earlier about Cancer Survivorship series about the unique needs and responsibilities of people who have been diagnosed and treated for cancer.

The year was 1986. It was a cold, frosty day in December, and it had just become clear to me that my father simply couldn’t take it anymore. I was living with my parents, having graduated from college earlier that spring, and every morning, my father woke up to the sound of my coughing—coughing that had gotten progressively worse. I’d had a terrible cold shortly before my graduation that I just couldn’t seem to shake, so I attributed my coughing to that. But the fact was that for more than a year, I’d also been fighting terrible exhaustion, drenching night sweats, and, strangely enough, unbearable itching. I’d gone to a number of doctors, looking for some explanation, but none of them could seem to find anything wrong. They each assured me that it was probably “just stress.”  After all, I was soon graduating and was probably worried about finding a job, right? And as a young woman who otherwise seemed very healthy, what else could possibly be wrong? In fact, during my last doctor’s visit, I was actually led to feel embarrassed: why would I think there was something wrong if the doctors themselves couldn’t find anything? So I gave up and resigned myself to thinking that I was simply worn out from my last year of college and that I’d gradually begin to feel better.

But I didn’t get better: I simply got used to feeling pretty terrible and essentially ignored or repressed it, depending on the day. My “newest” symptom was the relentless coughing. Every morning like clockwork, I began to have a coughing attack that seemed to last a little bit longer than the one the day before. Then at breakfast each morning, my parents expressed their worry, and I repeated the fact that I’d been to doctor after doctor who couldn’t find anything wrong. Then, on that morning in December, I stepped out of the shower, started coughing — and couldn’t stop. I wasn’t able to catch my breath, I was gasping for air, and I was truly frightened.

As I made my way shakily to my bedroom, after ensuring that I was okay, my father asked me whether any of my doctors had ever taken a chest x-ray. When I shook my head, he told me firmly to call work and tell them that I wouldn’t be coming in today. He was bringing me to a doctor now, and in a tone that broached no argument, stated, “And we’re not leaving there until they give you a chest x-ray, a complete exam, and an explanation of what on earth is wrong.”

And when the doctor placed that x-ray on the light box, it was clear that I was in terrible trouble. My coughing and all the rest of my symptoms were due to stage 3 Hodgkin’s lymphoma.

So at the age of 22, my world changed.  When looking at that chest x-ray, I became a cancer survivor — and by their insistence that I receive that x-ray, my parents had already become my advocates. Yes, I had initially tried to get answers concerning my symptoms. But I was young, unworldly, and self-conscious and simply didn’t have the confidence to question my doctors. Unfortunately, I was much more apt to question myself, and that lack of persistence as much as anything resulted in stage 3 cancer at my diagnosis.

Fortunately, however, today I no longer question myself. I question my doctors. And if I hadn’t learned that very difficult lesson, I wouldn’t be here today writing this essay for you—because my Hodgkin’s diagnosis was just the beginning.

My cancer treatment took place in 1987 – 1988 and consisted of a very aggressive protocol, including eight cycles of chemotherapy (alternating MOPP/ABVD) followed by six weeks of high-dose radiation. In the years since, I developed what is now termed as numerous “late effects” due to my previous radiation. When I was in my 30s, more than 15 years after my initial treatment, I once again found myself in a role where I was “too young” to be exhibiting certain symptoms, but this time I had absolutely no reluctance in questioning any doctor’s “conventional wisdom.”

It began on a typical day where I worked as a transcriptionist at a local neurology practice. I was moving a few patient charts before leaving to go home. Although I wasn’t doing anything physically taxing and wasn’t feeling particularly stressed, I suddenly became unaccountably aware of my heart—it seemed to be racing. I could feel it pounding and almost galloping in my chest. I sat down for a few moments until the sensation stopped. When I was on my treadmill a day or so later, I involuntarily raised my left arm. It was then that I felt a heavy sensation in my chest. I got off the treadmill, and the feeling went away immediately. But when I laid down in bed a bit later, I inexplicably felt short of breath though I was obviously at rest. The next morning, I immediately called my PCP and explained my troubling symptoms. I was told they had an opening in a few weeks. It’s important to note that at that time, there wasn’t a great deal of discussion or understanding of late effects due to cancer treatment — that was to come a few years later. But a little voice in my head insisted, “Tell them about your radiation and chemotherapy now.”

This time, I didn’t question myself for a second. I cleared my throat, took a deep breath, and explained that I’d had radiation to the chest and chemotherapy with Adriamycin about 15 years before. I knew that what I was experiencing was not normal, and I was terrified that my heart had been damaged by my treatment. By advocating for myself, I was taken seriously, and I hung up with an appointment later that same day.

Surprisingly, my EKG results were normal. But I carefully outlined my history for the APRN who was examining me. I explained that although I was only in my 30s, I had serious concerns that my symptoms could be due to cardiotoxicity secondary to my radiation or chemotherapy. She agreed that heart disease was indeed rare in women my age, but that my history very much had to be taken into account. She thanked me for being so candid and specific about my previous medical history and the cancer treatments I’d had. She then explained that she wanted to make a few phone calls to have me seen emergently by a cardiologist.

The test results from my new cardiologist confirmed my fears: coronary artery fibrosis (scarring), stenosis (narrowing), and 90% blockage secondary to radiation.

My case was reviewed by a team of cardiologists due to the location of the blockage and the distinct risk of another coronary artery collapsing during an angioplasty. After conferencing, their overall recommendation was to conduct an angioplasty with stent placement. But they also stressed the need to have a team of cardiac surgeons on hand to perform a coronary artery bypass graft (CABG) should a second artery indeed collapse, leading to risk of a heart attack during the procedure. And it was 100% my choice: deciding to go with angioplasty or going directly to a CABG. It was one of the most agonizing decisions of my life. But I ultimately decided to go with the angioplasty—and a second artery did in fact collapse during the procedure. But the team was able to immediately do a second angioplasty for that artery and place a second stent. And thanks to my two cardiologists, the procedure was successful.

Years later, my APRN—the one who had listened to my story so carefully as I stepped into my role as a self-advocate for the first time—shared something with me that I’ll never forget.  She asked whether I remembered that she’d spent a great deal of time on the phone to ensure I was seen by a cardiologist emergently. I assured her that I recalled all too well. She told me that when she finally got a cardiologist on the phone, he listened to everything she outlined about my case, and his response was, “Why are you calling me about this patient?  She’s far too young for her symptoms to be caused by coronary artery disease.”  She told me that she then went over my case again, stressing my history of high-dose radiation to the chest area, my chemotherapy with Adriamycin (whose most dangerous side effect is heart damage), and why it was therefore so critical for me to be seen right away. He listened as she advocated for me, minutes after I’d finally advocated for myself.

And now, he too is an advocate: I was the first patient he’d seen with cardiotoxicity as a late effect of cancer treatment. Just months later, he emergently treated a young man who had also had Hodgkin’s lymphoma and developed the same cardiac symptoms I’d exhibited; he has given grand rounds on treatment-induced cardiotoxicity; he now advocates on the critical need for specialists, PCPs, and patients themselves to be aware of the potential for late effects of cancer treatment for all cancer survivors, no matter their age.

The words that author Catherine Ryan Hyde expressed in Chasing Windmills can be likened to the choices we make concerning self-advocacy and advocacy on the behalf of others:

“I keep telling you the future isn’t set in stone. It’s not all decided yet. The future is just what’s down the road we decided to walk on today. You can change roads anytime. And that changes where you end up.”

More Blog Posts by Debra Madden

Debra Madden lives is Newtown, Connecticut, and is a 2-time cancer survivor: Hodgkin’s lymphoma as a young adult and breast cancer 20 years later as a late effect of her original radiation treatment. She is an active cancer research advocate who serves on several national grant review committees and panels, including for the FDA, the Department of Defense Breast Cancer Research Program (BCRP) and the Patient-Centered Outcomes Research Institute (PCORI). You can read more of Ms. Madden’s blogs at Musings of a Cancer Research Advocate and find her on Twitter at @AdvocateDebM.

Ms. Madden’s photo is by Nancy Crevier at “The Newtown Bee.”

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

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.”

In remembrance

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 9th and August 11th.

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.” 

Seussical

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.

Seussical Comes to Newtown

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 rehearsal

“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.