This is the Hard Part: the Other Side of Advocacy

I’m not sorry to say good-bye to 2015.  It was a cruel year during which we lost several beloved patient advocates, who were wrenched away from their families, their friends, and so many loved ones by the monstrous, hydra-headed beast, cancer.   It was the year during which I learned that my first cousin had been diagnosed with brain metastases due to her stage IV HER2+ breast cancer. It was the year when I began to fear going onto Facebook, since I’ve now learned heartbreaking news about dear friends there far too many times. And it was the year when I began to dread receiving any emails whose subject lines simply contained the name of a fellow advocate with cancer—because it almost always meant the same thing, more tragic news, the loss of yet another dear friend and remarkable advocate.

In years not so long ago, when I was asked to explain what it meant to be a cancer research advocate, I welcomed the question. After all, I was being asked about my passion, what in many ways had become my raison d’etre. I could pinpoint with precision the very week when I stepped out of my role as a cancer patient and into that of a research advocate. After much difficult, fascinating, intellectually inspiring work, I was now sitting at the table as a partner with researchers, clinicians, and fellow advocates to drive the critical research questions that truly mattered to cancer patients themselves. I was an engaged, vocal participant at national cancer conferences, sometimes watching history being made as new treatment breakthroughs were being presented—and sharing deep disappointment with the oncologists, scientists, and advocates in the audience when novel agents that were followed with excitement ultimately failed to live up to their promise. And I was meeting highly passionate, intelligent, driven people from all parts of the country and, often, other nations, who were fellow cancer survivors and committed advocates, forming immediate deep friendships. It’s very difficult to describe how meaningful such friendships are. They involve an instant recognition of a kindred soul–one who knows first-hand just what you’ve been through from all aspects, including physically, emotionally, mentally, socially, spiritually, when cancer so rudely knocks at your door. These are folks who truly “get it,” to whom you immediately and without hesitation find yourself opening your heart and confiding the most private thoughts and concerns in a way you never could, nor wished to do so with your loved ones, in your reflex to protect them from your darkest thoughts and fears. Such friendships are life-changing, they are life-long, and they are one of the indescribable gifts that can give even the most difficult lives meaning. And yet. When your lifelong friend’s life ends far too soon—and due to the very reason that brought your life paths together when they otherwise never would have crossed—what then?

It’s now been more than 8 years since I’ve stepped into the role of an advocate. And with each year comes an increasing wave of devastating news. The terrible truth is that this should not have been unexpected for we who are cancer survivors and research advocates. For those of us affected by breast cancer, for example, we know that HER2+ and triple negative/basal-like breast cancer subtypes are associated with early relapse risk. And we know that ER+ tumors are associated with persistent late relapse risk beyond 5 years, with up to one-third of patients recurring potentially decades after active treatment. Yet every single time I learn that one of my advocate sisters or brothers has developed metastatic disease, I’m blindsided. And worse, when I receive the terrible news that a friend with stage IV cancer has passed, I still somehow allow myself to be blindsided yet again. After all, for my friends with metastatic breast cancer, I knew that they did not have curable disease. Each time, we prayed that their treatments would lead to “no evidence of disease” (NED) and that this would last indefinitely–or until additional, much more effective treatments became available. And for some friends with stage IV disease, they have remained with NED for several years. Others have sought new clinical trials after their cancer became resistant to their current treatment and were able to maintain stable disease for quite some time, sometimes for years—and if they became resistant to that agent, some were able to enroll on another clinical trial. And yet. There have been more of those times when, after seeing my friends year after year at the same conferences or grant review sessions, they suddenly were not there. Or they were, yet it was impossible to deny how frail they appeared, how very sick they were, that their cancer had become more adept at resisting treatment. And perhaps the most soul-shattering times were those when, after speaking with a friend who seemed to be doing extraordinarily well with her new treatment, we learned very shortly thereafter that she was no longer with us. Each and every time, I’ve been blindsided by their deaths; I’ve been lost, angry, completely unaccepting of their loss from this world.

When undergoing my active cancer treatment for Hodgkin’s and, later, for breast cancer, I often worried about my oncologists and the oncology nurses who spent so much time with us, who supported us at the scariest times of our lives, who provided comfort and strength not just to we as patients but to our families as well. Both of my oncologists and their oncology nurses essentially became honorary family members, as they did for so many others whom they treated day in and day out, year after year. How were they able to form such powerful, caring relationships, yet learn how to cope with their patients’ deaths, the deaths of far far too many patients? Fortunately, in more recent years, there has been increasing discussion and recognition about the impact of such repeated losses and the need for improved resources and support for oncology professionals. As noted in Cancer Therapy Advisor, “Everyone who enters the field of oncology knows that many of their patients will die, but foreknowledge is not protection against the cumulative effects of loss.” I would argue that the same is true for cancer research patient advocates, particularly for those of us who have been actively engaged for several years and are experiencing what has been described as “cumulative grief”–the compounding emotional, physical, and spiritual responses to repeated exposures to profound loss. Just weeks ago, upon learning of another friend’s death, I shared with a fellow breast cancer survivor that I was still reeling from the terrible news (and the awful news before that, and the devastating news before that)—and her response was direct, simple, and wise: “Deb, this is the hard part.”

That it is—and during this past year, the sheer weight of it was sometimes more than I thought I could bear. Yet it’s during those times that I try to remind myself: in addition to being advocates for cancer research, we’re here to advocate for one another, and the support we provide to our fellow advocates during these devastating times is crucial. Oncologists and oncology nurses have appropriately stressed the need for greater institutional and professional support to help them cope with their grief due to their patients’ deaths. It could be extraordinarily helpful if we, too, as dedicated cancer patient advocates, similarly received such supportive and educational resources through cancer organizations and professional societies on topics such as cumulative grief, end-of-life care, pain management, and palliative care. After all, as we know so well, knowledge is power and often provides the tools and the strength to transform even the most difficult, painful problems and emotions, including grief, into truly positive outcomes.

In addition, every time we experience these terrible losses, it serves as a stark, powerful reminder of why we became advocates in the first place. As cancer patients and advocates, we are the ones who bring a critical sense of urgency to identifying the cancer research questions that truly matter, that will have the most impact, that will ultimately lead to more cures. By working to support one another and to transform our grief into remembrance and renewed commitment to our advocacy efforts, perhaps that is the most appropriate, necessary, and powerful way to honor all of those we have lost.

peaceful

“Grief starts to become indulgent, and it doesn’t serve anyone, and it’s painful. But if you transform it into remembrance, then you’re magnifying the person you lost and also giving something of that person to other people, so they can experience something of that person.”

~Patti Smith

A Postscript

It pains me to say that just 5 days after the new year, our cancer patient advocacy community has experienced yet another devastating loss.

Ellen Stovall was the Senior Health Policy Advisor at the National Coalition for Cancer Survivorship (NCCS) and a founding member of the Institute of Medicine (IOM)’s National Cancer Policy Board.  As I posted on Ellen’s wall on Facebook, she was a shining light to so many of us, and it is impossible to articulate the profound difference she has made for cancer survivors in this country. She spoke profoundly and powerfully on the need for further knowledge about the very serious late effects that can result from cancer treatment. Though I never had the honor of meeting Ellen face to face, I was and will always be inspired by her remarkable accomplishments in cancer survivorship advocacy.  As I’ve written about here in my blog, like Ellen, I was originally diagnosed with Hodgkin’s lymphoma, and I also went on to develop potentially life-threatening late effects of my treatment, including breast cancer and cardiac disease. It is absolutely devastating that Ellen passed away 2 days ago due to sudden cardiac complications secondary to her cancer treatments. Her passion and commitment touched so many lives, and her legacy will continue–a legacy of ensuring that cancer survivors are able to become true partners in their medical care and that shared decision-making with their medical team will help to prevent or mitigate such life-threatening late effects for many cancer patients. My first major focus as an advocate was the need for improved cancer treatments that minimized the development of serious acute and late effects while continuing to ensure optimal efficacy and positive patient outcomes. Going forward, my efforts in this critical area will be in tribute to Ellen, one of the true pioneers of the art and science of cancer survivorship.

Ellen Stovall

Back in 2002, Ellen shared the following thoughts when speaking during a National Cancer Institute (NCI)/American Cancer Society Survivorship Symposium in Washington, DC, called “Cancer Survivorship: Resilience Across the Lifespan.” Fourteen years later, her words resonate just as deeply:

“So, my closing thoughts to you are, as you leave this room today to go back to the very, very important work of writing grants, reviewing grants, and helping people in your communities day to day deal with their personal journeys of survivorship, please know that the cancer advocacy community, represented by scores of organizations that were founded by and for cancer survivors, stands ready and eager to tell you our stories of survivorship with the belief that while grateful for the blessings of survivorship, for the increasing length of days, months, and years added because of new and improved therapies for cancer, that this diagnosis is filled with many punishing and adverse consequences as well as joy for living each day.

“The physician Victor Sidel once said that statistics are people with their tears wiped away. That is the way NCCS views cancer survivors, and on behalf of all of us at NCCS, thank you for your attention and for all you do for cancer survivorship.”

Thank you, Ellen, for all you have done for so many.  Rest in peace.

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

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

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.”