Empty Inside

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

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

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

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

empty inside

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

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

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

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

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

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

Grumpy cat

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

Empty

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”