In Dedication to Donna

“Friends are the angels that lift us up when our wings have forgotten to fly.” 

                                                                                                                     ~Author unknown

What can you write about a beautiful person inside and out who has lost her life far too young …

Who loved her young son more than heaven and earth …

Who was a fiercely intelligent, driven, passionate advocate for others until the very end…

Who touched the lives of everyone she met, who was intellectually curious about everything around her, who was always the one who brought strength and laughter no matter how difficult the situation, and who brought so much joy to her family and her so many friends?

Donna Chaffe, my friend, sister, and fellow breast cancer advocate, passed away this Monday, October 13th at the young age of 48.  And the day she died was this year’s “Metastatic Breast Cancer Awareness Day,” the one day in the pink haze of October that is dedicated to debunking the “feel-good” myths and increasing understanding of the very dark realities for those with breast cancer.

As Dr. Susan Love explained in her October 13, 2011 blog piece, Metastatic Breast Cancer: Telling the Whole Story, “I can’t tell you how important it is that there is at least one day in October that is dedicated to acknowledging that not everyone is cured and not every cancer is found early. We need to stop congratulating ourselves on our progress and start focusing on figuring out why these women have not benefited from all the money we have raised. Reach out today to someone you know [who] represents the other side of breast cancer, the one that is not so pink. We will not have accomplished this goal as long as one woman dies of this disease!”

Donna, who knew the other side of breast cancer far too well, was a passionate advocate focused on the need for meaningful, innovative, and impactful research for the prevention and cure of metastatic breast cancer.  And the day that Donna and I met for the first time, we were both new advocates who were attending the National Breast Cancer Coalition (NBCC)’s Project LEAD®, which is a premier advanced, and intense scientific training course on breast cancer.  We were both excited about becoming active educated breast cancer research advocates in order to gain a seat at the table with senior advocates, scientists, clinicians, and other stakeholders where research decisions are being made.

I’ve written about this before, but it bears repeating.  When I first walked into that room in Denver as Project LEAD was beginning, I was a painfully shy, relatively young woman who had never traveled on her own before, who was enervated by any new social situation, who was extremely uncomfortable being in a room full of strangers.  But just a few days later, at the end of Project LEAD, I left that same room having made lifetime friendships with several of the women who were my fellow LEAD Graduates—and I’m blessed that Donna was one of my new sisters.

Most who knew Donna would probably agree that she was anything but shy.  She was full of energy, so friendly, outgoing, passionate–and absolutely hilarious.  She had a million-dollar smile that lit up a room, and I have no doubt that I laughed more with Donna during those few days in Denver than I had in the entire year before.

After Project LEAD, Donna was interested in becoming a peer reviewer for the Department of Defense (DoD)’s Breast Cancer Research Program—and she would have done so if her need for more treatment had not prevented that.  Breast cancer is a cruel enemy, and each time Donna was right on the cusp of becoming a reviewer for the next peer review cycle, it seemed that it resisted, taking a new turn that required additional treatment and caused difficult side effects.  But Donna never seemed to become discouraged and continued advocating in so many ways.  One of the many things I’ll never forget about Donna is how she immediately jumped in to advocate for my first cousin, Laura, when she was diagnosed with metastatic breast cancer.  As I wrote in an earlier blog post, the upsetting irony was that I received the news about my cousin while sitting in a session on the advances in breast cancer treatment in the last 50 years.  Surrounded by hundreds of others during this session of the American Society of Clinical Oncology (ASCO)’s Annual Meeting, as tears were rolling down my face, I immediately sent messages to dear friends and advocates with metastatic breast cancer themselves, asking if they could provide my cousin with support.  This of course included Donna.  In my note to her, I told her that I had a huge favor to ask:  I explained that my cousin was “blind-sided and isn’t yet able to talk on the phone, but when I asked if she would be interested in corresponding with some wonderful advocates and dear friends of mine who are living with metastatic HER2+ breast cancer, she immediately said yes.  I know that it’s been a very tough time recently, so if you’re just not up for this, I completely 100% understand.  But if you are able to, I would forever be grateful because I can’t imagine anything that could be more helpful to my wonderful cousin than corresponding with you, my dear friend and wonderful advocate.  With love and gratitude, Deb.”

And of course, Donna immediately responded:

“I am so sorry, Deb.  Cancer really SUCKS!!!  I will absolutely!!! contact her.  This round with me is so far my scariest.  I know the feeling of being told ‘it’s back’ and I wish no one ever had to hear it.  Luv ya, Deb, hang in there sweetie.”

This took place just months ago in late May.  Even as she was having such a difficult, frightening time herself, she continued to advocate passionately for others—truly amazing, so truly Donna.  Just one look at her Facebook page shows her enduring spirit and strength, such as the quotes that she loved to post–which always inspired all of us who read them.  For example, this August, she posted the following:

Life

And in mid-September, she shared this:

Strength

In late September, though she was feeling very tired and having difficulty with her new medications, she shared with her friends that she had “finally taught ‘The Boy’ to make chili!” and that she was recording recipes “for Erik for someday, including old family secrets. ;)”

And on October 3rd, Donna typed her last posting on Facebook, as always advocating for others:

“Please remember that we are entering PinkTober.  However, nothing ‘pink’ cures cancer, especially pink lightbulbs.  Ensure that if you buy something pink for ‘awareness’ that the proceeds are going to research into or prevention of metastatic cancer!  Breast cancer has to spread to kill.  We’re all becoming ‘aware.’ Now let’s put that awareness to use through research into causes and prevention.  Make chemical companies stand up and tell us why they are still adding carcinogens to our food and environment!  METAvivors unite! Some of us are still waiting for a miracle!!!”

Ever hopeful, ever strong–The fact that such a miracle did not come in time for Donna breaks my heart.

 

Sweet Donna

 

 

Donna and Erik at the One-Eyed Pig

Donna with her beloved son, Erik, at the “One-Eyed Pig BBQ” during a visit with us in Newtown, Connecticut in March 2013

 

Donna

 

In Donna’s obituary, the family asks that in lieu of flowers, memorials may be directed to the Iowa Breast Cancer Action Foundation in Donna’s memory.

A Postscript and a Tribute: To Maria

In my last blog, I mentioned a dear friend of mine with metastatic breast cancer who had just made the very difficult decision to enter Hospice.  I knew something was desperately wrong when I saw that many of my advocate friends had begun to replace their own profile pictures on Facebook with pictures of Maria.  I reached out to one of them, saying, “Please tell me that this isn’t happening.”

But it was.  Maria was nearing the end, and across the country, from California to Texas, from Ohio to New York City to Newtown, Connecticut, her friends and fellow advocates, many of us whom considered her our mentor, prayed for Maria and her family.  This Memorial Day, we learned that Maria had slipped away in the small hours of the morning.   As our country memorialized our servicemen and servicewomen, Maria’s beloved family and the so many friends who loved her began to mourn her loss and to honor her memory.  In the days since, many beautiful, poignant words have been written about Maria, including her heartfelt and heartbreaking obituary.  And I’m humbly adding my voice as well to honor the beautiful soul who was and is  Maria Wetzel.

Everyone who knew her will tell you: there was something about Maria that stayed with you from the moment you met her.  I was no exception and can so clearly remember the first time I met her, now more than 6 years ago.  On that day, I had arrived in Denver, Colorado to attend my very first meeting as a breast cancer advocate.  I had just taken my first flight alone to a strange city, where I didn’t know a soul.  I was not only uncomfortable around new people–I was painfully shy.  And to make matters even more challenging, I’d just completed my chemo a few months before, still felt completely exhausted and weak, and was a bit self-conscious about my short hair with the obvious “chemo curl.”   In short, I was a nervous wreck.  But I had been absolutely determined to do what I could to try to shove my shyness aside, to “man up,” and to attend this workshop because it was something about which  I was so passionate.

Just a few weeks before, I’d been delighted to learn that I’d been accepted to attend the National Breast Cancer Coalition (NBCC)’s Project LEAD(r), which was an intensive scientific training course for advocates–for those who were dedicated to learning about the science of breast cancer, genetics and epigenetics, epidemiology, statistics, and trial design and how to robustly evaluate the evidence.  Not for the faint of heart, Project LEAD was and is an extremely competitive, 5-day training workshop led by faculty from the NIH, the FDA, academia, as well as clinicians.  During my treatment, I had learned about the NBCC, its laser-beam focus on the evidence, and its training programs, and this organization immediately resonated with me.  I promised myself that as soon as I finished my active treatment for breast cancer, I would join the NBCC and apply for Project LEAD.  And when I learned that I’d been accepted, I was beyond thrilled–and reassured myself that traveling on my own for the first time and spending several days with people I’d never met would be GOOD for me and that I’d just have to get control over my shyness. This was simply too important an opportunity to let slip away, and if I did, I’d never forgive myself.

So on that first day, when I walked into the conference in Denver, and I was confronted with a very large room filled to the brim with strangers, I was so nervous that my hands were shaking.   I selected one of the few remaining chairs, quietly looked around, and tried to get comfortable without drawing any attention to myself.   The introductions of the faculty and the mentors soon began–and I remember my immediate intimidation by these obviously brilliant people. As I listened to one after another of the mentors begin by saying how many years ago they’d been diagnosed with breast cancer and then speaking so passionately about their experiences as advocates–on scientific grant review panels, on FDA advisory committees, testifying before Congress, and so on–I was frankly overwhelmed by the profound accomplishments of these intelligent women who had been advocates for 10, 15, 20 years.  And I couldn’t still that little voice in my head that kept asking myself, How on earth am I going to get through this course? How could I ever hope to become as involved as these women and to even have one iota of the impact they’ve made for so many?

Maria was one of these remarkable women.  As she began to speak, the first thing that I noticed was her amazing long hair and the way she wore it straight down past her shoulders.  This may seem like such a frivolous thing to capture my attention, but I know that most of you who have lost your hair to chemo will be able to understand.   I of the new, short chemo curl, the one who had always had long hair since I was a kid, the one who was thinking that maybe, just maybe, I’d have one more chance to grow it long in my 40s before looking completely ridiculous–thought that Maria, in her 60s, looked absolutely wonderful and just so awesomely cool!   But of course, much more importantly, when Maria introduced herself to our Project LEAD class and began to speak, something suddenly clicked  into place for me.  Her voice was so quietly powerful, her explanations of the most complex scientific issues so eloquently clear, her questions and insights so helpful in getting to the heart of every issue, that I immediately began to feel reassured.  My nervousness began to dissipate, and as  I listened, I became more present and was slowly but surely drawn into the science that I love.   My shyness slipped away, and my passion for the information we were learning quickly left my initial intimidation in the dust.  And so began my Project LEAD experience.

In the days that followed, as I immersed myself in this invaluable information and new knowledge, I began to see so much in a completely new, much brighter light, and I left Denver as a true breast cancer research advocate.   And as I’ve said so many times in the years since, where I’d once entered a room full of strangers, I left having made some of the richest, most treasured friendships of my life with my Project LEAD classmates and with many of the mentors, including Maria.

Taken during NBCC's Project LEAD, August 2008, a year and a half following breast cancer diagnosis

Taken during NBCC’s Project LEAD, August 2008, a year and a half following breast cancer diagnosis

In the next months, many of us who were new advocates began to spread our wings, starting to pursue becoming involved as cancer research grant reviewers and regularly attending cancer research symposia to stay as current as possible on the data.  It was during that time when, about nine months or so after Project LEAD, I walked into the Advocate Lounge while attending my first American Society of Clinical Oncology (ASCO) Annual Meeting and was delighted to see Maria.  She greeted me with a warm hug and, although  I was still very much a new research advocate, immediately asked for my thoughts on new research data presented that day on one of the major topics at the conference.   (Those of you who are breast cancer research advocates will remember the apparently contradictory data from different clinical studies concerning the effect of a particular enzyme’s [CYP2D6]’s metabolism on Tamoxifen’s efficacy.)   That conversation was one of the most intellectually stimulating discussions I’d ever had as an advocate, and it was the first of many similar conversations I’d have with Maria, other advocates, scientists, clinicians, and academics, both personally and in the context of grant reviews and advisory panel discussions.  Maria had once again served as my mentor, genuinely interested in and encouraging of my thoughts, guiding me and so many other new advocates in her always generous, quietly eloquent way.

Over the next few years, I saw Maria often, during breast cancer research symposia, NBCC annual meetings and, as I became more and more involved as an advocate, during Department of Defense Breast Cancer Research Program Programmatic Review, Think Tanks, and other breast cancer research panel discussions.  And one evening, when having a conversation with Maria during the San Antonio Annual Breast Cancer Symposium, I remember becoming very worried.  Maria seemed short of breath, and she explained that she had been struggling with what she suspected was pleural effusion (a collection of fluid in the space between the linings [pleura] of the lungs).  She said that she’d been seeing her doctor and would be again shortly after returning home from the conference.  My heart dropped, and I did everything in my power to keep myself from doing what so many of us as survivors and advocates can’t help but do: worry about the worst possible scenario.

And when I next saw Maria a few months later … the world stopped.  I had just arrived in DC for the NBCC’s annual conference and was walking through the exhibit area when I heard someone calling my name.  When I turned around, I saw a woman walking toward me with a warm, kind smile on her face.   It appeared that she had just recently lost her hair to chemo, and as I got closer, I wasn’t sure that I recognized the person I was seeing, though her voice sounded so familiar to me.  And suddenly, I recognized her beautiful smile, her warm expression, my dear friend, Maria—whom I realized must have been diagnosed with metastatic breast cancer.  I’ll never forgive myself for this, but I immediately burst into tears.  I hadn’t heard of her diagnosis, and the reality of it blindsided me.  I’d made the terrible error of assuming that no news was good news, rather than the worst possible news.  Maria wrapped her arms around me, patted me gently on the back, and said over and over again, “I’m so sorry, Deb. I’m so sorry that you found out this way.  I’m so sorry.”  How could this be, that Maria was comforting me?  But that is who Maria was and will always be.

So many years following her original estrogen-receptor-positive breast cancer diagnosis in 1996, Maria’s breast cancer had returned, metastasizing to her lungs and to her liver.  And as she worked with her healthcare team to proceed with different treatments, Maria continued pushing forward with her research advocacy, with her writing to explain and analyze new research findings for other advocates, with her tough questions that always got to the heart of the issue, and with her mentorship.  As time moved forward and as Maria and her healthcare team tried additional treatments to slow the progression of her cancer, we all prayed that Maria would reach a point where she heard the words “stable disease” and “no further progression.”  But in mid-March of this year, I received a heartfelt message from another advocate friend and mentor, who shared with me that Maria had now been diagnosed with brain metastases and progression of her liver mets.  She was just completing whole brain irradiation, seemed to be doing amazingly well with her treatments, and was in good spirits.  But we also all knew that this wasn’t good.   And our prayers continued in earnest.

My friend told me that Maria was now having speech difficulties and therefore found it easier to correspond in writing rather than by phone.  So I sent Maria a message, telling her how dear she was to me.  I told her I was holding her close in my thoughts and in my prayers every day … that one of the biggest gifts my advocacy has given me is bringing remarkable people such as her into my life … that she was quite simply one of the most amazing advocates and one of the kindest people I’ve ever met … that I felt so blessed to have her friendship … that I missed her.

Maria wrote back the next morning and thanked me for my words and my prayers.  As my friend had said, she seemed to be in good spirits, and she reassured me that she was doing well.  Maria told me about her new medication regimen and, true to form, she minimized its difficulty, saying that it “so far is easy.”  And unbelievably, she once again gave me two wonderful gifts.  A few months earlier, knowing that I work with a neurology practice, she had asked for information that she might be able to pass on to someone close to her whom had recently been diagnosed with a chronic, progressive neurologic disease and was having understandable difficulties adjusting to the many changes and challenges associated with the disease.  She had been so worried about this, and in this message thanked me for this information, stressing how helpful it was and her relief “that it should make their lives so much better.”   In the midst of everything Maria was going through, she was as always advocating for her loved ones.  And in her note, Maria left me with a message that I’ll hold to my heart for the rest of my life:  she told me that I was “without a doubt, one great advocate and if I had any influence on that, I am happy.”  She had a profound influence on every one of us whom were so blessed to have her in our lives.  Maria leaves the family she loved so deeply, her so many dear friends, and a legacy of advocates across the country who are keeping her memory, her strength, her loving spirit, her hopes, and her mission in our hearts.

I leave you with Maria’s own words and ask you to keep her and all those who loved her in your prayers.  Rest in peace, sweet Maria.

Maria Wetzel, DoD Breast Cancer Research Program's "Era of Hope" conference

Maria Wetzel, DoD Breast Cancer Research Program’s “Era of Hope” conference

Vital Options, "Living with Metastatic Breast  Cancer"

Vital Options, “Living with Metastatic Breast Cancer”