A Cancer Survivor’s Best Friend:

Sophie, My Springer Spaniel Puppy

Though my love of dogs had been lifelong, I had no idea that my beloved Sophie’s true caring of me during my frightening treatment for stage III Hodgkin’s lymphoma would be so life-affirming. Sophie was my protector and guardian, my champion, and my furry healer.

Like so many kids, when I was growing up, I immediately fell in love with all animals: elephants–particularly Morganneta, who lived at Forest Park Zoo in Springfield, Massachusetts–penguins, ponies, giraffes, you name it. But by far, my overall favorites were puppies. I had countless stuffed animals, with one of my most beloved being a yellow beanbag dog, not-so-creatively named “Floppy.” (Unfortunately, my younger sister also loved Floppy, so we often fought over him as little girls are wont to do.) I devoured the Great Creatures Large and Small series by James Harriot and decided that when I grew up, I would also become a veterinarian. (Of course, when I became older, I quickly learned that getting accepted into an accredited college of veterinary medicine was considered more difficult and more competitive than being accepted into many medical schools. Then there was the fact that if I did become a vet, I’d often have to cause discomfort, hurt, and pain when caring for animals to help them, whether with routine or emergency care.)

But fortunately, my family had a Springer Spaniel, named Tucker, when we were growing up, so I showered him with my puppy love. Tucker wasn’t the most intelligent dog, but he had a wonderful character and personality all his own. He patiently allowed my sister and me to dress him up in people’s clothes in various costumes and would do his best to stay still while we tried to figure out the best angle from which to photograph him.

This was also back in the day when most towns did not have leash laws, so he was constantly looking for trouble, and he always found it.

Tucker as an adorable puppy
Photo by Peter Levine

He became famous in my neighborhood for all of his adventures. One of my first memories of Tucker was when he had been on prowl around the neighborhood for hours. Once he came home, my mother discovered that he was chewing something and seemed to be having difficulty. When she was finally able to get his mouth open (he was also quite stubborn), she discovered that he was chewing bright pink bubble gum! On another occasion, he arrived home carrying a prize of which he was obviously extremely proud–a full loaf of white bread (I believe it was “Wonder Bread”), still in its wrapper, albeit with quite a few tooth marks.

During another of his adventures, Tucker was gone for nearly a full day, and we were all getting worried about where he was. When he finally arrived, we learned that we were right to be worried. While presumably minding his own puppy business (or not), someone had practiced using a BB gun and had shot Tucker in his beautiful white belly. Fortunately, Tucker was truly fine, being the resilient young boy that he was–and we never did find out the scoundrel who would literally target a harmless puppy.

As an aside and as noted above, though Tucker was adorable and hilarious, he was not the sharpest puppy on the block. Years later, after getting married, we’d also had a terribly difficult time house-training our Springer Spaniels, Magpie, Daisy, and Molly–all of whom are shown in my Puppy Hall of Fame below. Just recently, during my Internet surfing, I came across a fun program that I wish had been available for Tucker and my family back in the day. “Brain Training For Dogs” is a new, funky–and some would say a tail-waggingly fun–dog training course. Developed by Adrienne Farricelli, a CPDT-KA certified dog trainer, it includes 21 creative, entertaining, and simple games for both you and your dog. The science behind the program to correct poor behaviors is known as “neuroplasticity,” which is a well-established idea that has been heavily researched by Harvard and other leading universities. Neuroplasticity in the human brain as well as the canine brain has been likened to “soft plastic”–i.e., the ability to mold and change new behaviors and habits. If you would like to learn more, click below for more details. 🙂

Sometimes, Tucker’s sense of adventure combined with his somewhat limited intelligence landed him in serious trouble. The scariest “adventure” that Tucker had is one that I truly wish I could forget. My father loved boating, and on the weekends, he would bring my mother, we kids, and sometimes Tucker to the shore in Connecticut. We’d then board our powerboat and spend the day on Long Island Sound, dodging other powerboats’ wakes and trying to slow down enough to make smaller wakes when approaching sailboats. One summer day, we’d had a great day together on the water, but it was time to head back to the marina where our boat was docked.

Photo by @rrinna on Pexels.com

But that day, something terrifying occurred. The tide was such that our boat was a bit lower than the landing dock where my father wanted to drop all of us off before mooring the boat. My mother was the first to step up onto the dock, and she and my father helped us up. My father then picked up Tucker and started to lift him higher, so that my mother could reach him. But Tucker was feisty, and the next thing that we knew, Tucker had fallen out of my parents’ arms and was suddenly in the water below, struggling to dog paddle his way back.

My sister and I immediately became hysterical, screaming for my parents to do something. But the harder that Tucker paddled, the more quickly the current seemed to carry him away. My father shouted to us that we should run as fast as we could to alert the owner of the marina and to get his help. Fortunately, the owner was there and somehow understood what my sister and I were saying between our tears and gasps for breath. Thank God that my father and the marina’s owner were able to quickly catch up with Tucker by boat, lift a very scared puppy into the boat, and bring him safely ashore.

The wonderful news is that Tucker mellowed with age and, though he stopped having such exciting adventures, he loved nothing more than lying on his back in the middle of the hallway to our bedrooms, waiting for more tender petting.

Enter Sweet Sophie

When I was away at Connecticut College, my family received an absolutely wonderful gift. My parents had recently moved to a different town on the Connecticut shore, purchasing a beautiful home right on the water. The previous owner lived right next door. As a welcoming gift, knowing that our family absolutely loved dogs, particularly Springer Spaniels, the owner came over one day carrying a tiny puppy and gently placed her in my mother’s arms. She was an eight-week-old Springer Spaniel puppy, and she immediately became a treasured member of our family. Miraculously, we all agreed that the name Sophie was perfect for such a sweet, loving, gentle little girl. When I came home from college, met her for the first time, and held her in my arms, I was nearly in tears. I was immediately in love, and to my delight, she fell in love with me in that same moment. She loved and adored everyone in my family–and frankly anyone she met–but I was the blessed one who became “Sophie’s person.”

Our beloved Sophie
Photo by Peter Levine

She was the perfect dog. She was absolutely adorable in everything she did. Her only “fault,” which is a normal part of being a puppy of course, was her tendency to pee on the floor whenever she was excited to see someone. In other words, every time I visited home from college, I was greeted by an adorable little tail wagging at hummingbird speed, followed by a slowly spreading yellow puddle on the kitchen floor. I was not the only one who was completely in love. I used to tease my father that Sophie was his favorite daughter, because he used to carry her around the house in his arms–something that when we were children, he rarely did with me and my sister, because, let’s face it, we were cranky, fussy babies. 🙂

In Trouble: My adult life choices had to be put on hold

When I graduated from college, I moved back home with my parents and Sophie. (My sister was still in college at the time.) For the past year and a half during my junior and senior years, I had been experiencing troubling symptoms and desperately trying to find the cause. I was constantly coughing, so much so that it was often difficult to stop; lost a tremendous amount of weight; was uncomfortable in my own skin, feeling itchy all over; was constantly exhausted; and was experiencing severe night sweats–all of which I later learned were “classic” symptoms suggesting Hodgkin’s lymphoma.

I was hired as a feature writer for a local newspaper, but felt that I had to obtain answers before even considering moving out and being on my own. About six months after I’d moved back home, I was getting ready for work, had just finished taking a shower, and proceeded to have the worst coughing attack I’d ever had. I literally could not catch my breath. My father started knocking on the bathroom door, saying “Please come out here right now!” After I finally managed to stop coughing and had gotten dressed, I stepped into the hallway, and my father said, “That’s it! There is no way that you’re going to work today. Something is desperately wrong here, and we are going to a doctor right NOW to insist that you get a chest x-ray. I can’t believe that not one of the doctors you’ve seen has ordered a simple chest x-ray!” Everyone in my house was understandably upset and frantic, including poor Sophie, who didn’t appear to comprehend what was going on and seemed unnerved as well. I later learned directly from Sophie herself that I was probably wrong about the former: she ultimately seemed to have a very deep understanding that I was extremely ill.

Fast forward a few hours later, and I was sitting in the doctor’s office, looking at an x-ray of my lungs on the light box (this was back in the 80s, so I know that I’m seriously dating myself ). And I immediately knew that something was terribly wrong. One of my lungs appeared in black (which is normal), but the other lung appeared nearly covered in white (definitely not normal). The immediate fear was that this may be cancer, but that wouldn’t be certain until I had a biopsy.

The next several days were a complete blur. I believe that it was the very next day when I met with a thoracic surgeon, and I was scheduled for a surgical biopsy at the Hospital of St. Raphael in New Haven, CT. I underwent my biopsy and waited for my results in a single hospital room in the cardiovascular wing. All of my fellow patients were awaiting or recovering from cardiothoracic surgery and were decades older than I was. When I was encouraged to get out of bed and start walking around the unit with my IV pole, most of the other patients became used to my passing their rooms again and again, and many of them started up conversations with me. We quickly became caring friends, serving as a support group for one another. One patient was scheduled for coronary bypass surgery a few days before I was discharged. I remember repeatedly walking by his room, becoming more and more anxious, praying that his surgery was going well. Finally, he was brought back to his room, and while I stood by his bedside, though he was extremely groggy, I remember how relieved I was when he opened his eyes and smiled, happy to see me.

I missed my parents terribly despite the fact that they visited as much as they could. But I was extremely upset that I couldn’t see Sophie. I knew that seeing her face would immediately help me to begin my healing process.

Fortunately, the nurses at St. Raphael’s were absolutely wonderful, and most of them were just a few years older than I. For the several days that I remained in the hospital, many of them began not just to provide their nursing care, but to visit and keep me company. My care at the hospital could not have been better, and once I returned home, I wrote a letter to the nurses, thanking them for everything they did for me during such a scary time for me and my family.

As I was being cared for so well at the hospital and forming friendships with my fellow patients, I later learned that my parents were terrified, waiting for the results of my biopsy and praying that my diagnosis was not lung cancer. When the news finally came, my parents both breathed sighs of relief. I know that it sounds strange to consider any cancer diagnosis a “good” one, but my prognosis would have been much more grave should it have been lung cancer. My new oncologist immediately explained to us that “Hodgkin’s lymphoma is one of the more favorable diagnoses, because it is much more treatable than other cancers.” I was grateful for that, but also learned the troubling news that I had late-stage IIIB Hodgkin’s lymphoma with extremely bulky disease. Hodgkin’s lymphoma that is characterized by “bulky disease” means that the tumors in the chest are at least ⅓ as wide as the chest or that tumors in other areas of the body are at least 4 inches.

I also had characteristic “B symptoms,” including drenching night sweats, severe exhaustion, loss of more than 10% of my body weight over the last six months (without dieting), and fever of at least 100.4°F. In addition, I had less common symptoms known to be associated with Hodgkin’s, including severe itchiness of the skin without a rash and deep, ongoing coughing. (Researchers suggest that persistent itching seen with Hodgkin’s is caused by cytokines, which are chemicals released by the immune system in response to lymphoma, resulting in irritation to nerve endings in the skin.) Further, during my biopsy, the surgeon discovered that one of my lungs had collapsed due to the tumors.

However, I did not have what is considered the “hallmark symptom” of Hodgkin’s, which is painless swelling in the lymph nodes in the neck, underarms, or groin. I was told that that was the primary reason why there was such a delay in my diagnosis. (One would think that the classic B symptoms that I had experienced for well over a year would have thrown up a red flag, immediately suggesting Hodgkin’s lymphoma, but that is a blog for another day.)

So having bulky disease with B symptoms meant that my lymphoma was very advanced, and my oncologist recommended intensive treatment, which was extremely difficult for patients but considered crucial at that time.

The year was 1987, and the standard protocol for late-stage Hodgkin’s disease was high-dose radiation and chemotherapy, including Adriamycin (doxorubicin), a drug that is now known to potentially cause cardiac effects. Technically, I was treated with two different combinations of chemotherapy, one called MOPP and the second known as ABVD. I would receive MOPP first (i.e., mechlorethamine, vincristine, procarbazine, and prednisone), have two weeks to recover, and then if my blood counts were not too low, I’d receive ABVD (doxorubicin, bleomycin, vinblastine, and dacarbazine). After two weeks, the next cycle would begin. I was originally scheduled to undergo six cycles. Once I was finally done with chemotherapy, I would next undergo mantle-field radiation therapy (again, standard treatment for patients with massive mediastinal lymphoma).

The primary goal at that time had to be enabling patients to go into remission, since if those with Hodgkin’s disease recurred, they had much fewer options for successful treatment and a much higher risk of mortality. Yet in the decades since, though many of us treated with these aggressive therapy protocols were fortunate enough to go into remission, we have also gone on to develop serious late effects, such as cardiotoxicity and a second cancer due to their cancer treatment years or decades earlier.

But where does Sophie come into all of this?

Sophie to the Rescue

I’ll never forget my first chemotherapy session with MOPP. When I walked into my oncologist’s office, I saw that there was a small bathroom on the right. It had a very distinctive smell of disinfectant (after my first few chemotherapy treatments, I’d walk by that bathroom and instantly feel completely nauseated, triggered by that smell). One of the oncology nurses brought me into a tiny room to take a blood draw. Once they determined that my blood levels were appropriate for treatment, the nurse led me to one of their infusion rooms. The MOPP regimen was considered “easier” than the ABVD regimen, since the latter included what many cancer patients refer to as the “red devil,” Adriamycin. The drug is bright red, delivered intravenously, and so caustic that it causes serious burns if it touches the skin.

After my MOPP infusion was completed, I had to go for a scan that my oncologist had scheduled. I had to stay completely still, so that there were no artifacts on the images. I soon began to feel horribly nauseated, and as the clock kept ticking, I was terrified that I was going be sick and have to start the scan all over again. Thank goodness that I finally got through the scan without that happening. I then had to wait another 30 minutes or so for one more scan, so my mother wheeled me to the hospital cafeteria. I had taken an oral Compazine (an antinausea drug) about receiving my chemotherapy infusion. But it ultimately did absolutely nothing to reduce my nausea: it only resulted in my exhaustion. We sat at a table in the middle of the cafeteria, surrounded by physicians. Literally seconds after we had settled, I began to gag, and my mother swiftly positioned the emesis basin she had obtained from one of the oncology nurses, and there you go–the beginning of the terrible journey that one had to take in the 1980s when we did not have the benefits of today’s powerful, effective, antinausea medications.

The drive home from the hospital in New Haven was an awful one. It was rush hour, the traffic on I-95 was worse than usual, and I spent the entire ride home vomiting. When we finally reached home, there she was: Sophie, my baby. I suspect that was the first time I’d smiled since this entire nightmare began. Because she was still a puppy, she was in her crate (which she loved as her own, cozy place), and when my mother opened the door, Sophie immediately bounded out, started licking my face, giving me her sweet puppy kisses over and over again, and jumping up to welcome me back. She closely followed me up the stairs (a skill she had only recently acquired) and waited patiently outside the bathroom as I vomited once again.

My mother, Joyce, Sophie, and Me–Late Into My Treatment for Lymphoma in 1987
Photo by Peter Levine

She was right behind me as I headed to my bedroom and, as I gingerly climbed into bed, Sophie did something she had never done before. I had a stuffed dog that sat on my headboard, and she jumped up on my bed, took the stuffed animal gently in her mouth, and jumped back onto the floor. She then pulled herself under my bed, lying directly beneath me, and began to gently knead the stuffed dog with her paws, back and forth, back and forth. Periodically, I’d have to pull myself out of bed and race to the bathroom for another round of vomiting. Sophie would always be right behind me, waiting outside the bathroom, and she would then escort me back to bed. Finally, the Compazine would enable me to drift off to sleep.

When I finally woke up in the late afternoon and made my way down the stairs, again with Sophie at my heels, my mother said that she had something absolutely amazing to share with me. She said that she had periodically come upstairs to check on me, and each time, she found Sophie on the bed with me, hovering over me. She had her front paws on either side of me, and she was reaching her head toward mine as closely as she could, almost as if she were checking to ensure I was breathing. She was utterly still and remained in that position for a few minutes until she was reassured that I was okay. When she noticed my mother standing at the door outside my bedroom, she would then jump onto the floor, gently take the stuffed dog in her mouth again, scoot beneath my bed where she had been before, and once again began to knead the stuffed dog with her front paws over and over, continuing to hold vigil over me.

And this became Sophie’s pattern. Every time that I returned home after receiving chemotherapy, she would literally watch over me and do her best to protect me while she guarded me both over and beneath my bed. Those days would be the only times that she would stay with me for hours and hours on and beneath my bed. And she did not once reach for my stuffed animal except on those days.

I never had seen anything like this in my life. I felt so cared for, loved, and protected by this sweet, kind-hearted puppy. I’ve had several Springer Spaniels in my life thus far and continue to love each and every one of them, with all of their very distinct personalities. (Please see all my babies at the end of this blog.) But I had an extremely special, unique, lifelong bond with Sophie, consider her my special puppy angel, and feel that she continues to watch over me from her spot on The Rainbow Bridge:

Photo by Laura Stanley on Pexels.com

“Just this side of heaven is a place called Rainbow Bridge.

“When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge. There are meadows and hills for all of our special friends so they can run and play together. There is plenty of food, water, and sunshine, and our friends are warm and comfortable.

“All the animals who had been ill and old are restored to health and vigor. Those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by. The animals are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind.

“They all run and play together, but the day comes when one suddenly stops and looks into the distance. His bright eyes are intent. His eager body quivers. Suddenly he begins to run from the group, flying over the green grass, his legs carrying him faster and faster.

“You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again. The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart.

“Then you cross Rainbow Bridge together….“

~Author unknown…

Puppy Hall of Fame

Tucker as a puppy, lying on her favorite couch back in the 70s (i.e., the world’s ugliest couch ever?)
Photo by Peter Levine

Our beloved Sophie
Photo by Peter Levine

Maggie (aka Magpie) as an adorable baby
Photo by Deb Madden

Magpie as a beautiful young adult, howling (doing what she loved most!)
Photo by Deb Madden

Gorgeous Daisy Mae (aka Daisybones) as a baby back when she had blue eyes!
Photo by Deb Madden

Adorable Little Miss Molly Grace (aka Captain Wiggles) after visiting the groomers
Photo by Deb Madden

The girls and best buddies, little sister Molly and big sister Daisy, hanging out
Photo by Deb Madden

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.

“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.

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.

“Financial Toxicity” of Cancer Treatment: Have You Been Affected?

During that indescribable moment when you first learn that you have cancer, many of us experienced a virtual avalanche of thoughts, worries, and raw emotions–or, for some of us, everything came to a standstill, and a thick fog seemed to drop from the sky, blocking all sounds and sights.  Or somehow, due to the mystery that is the human brain, both may simultaneously occur, as it did in my case with both of my cancer diagnoses.  When I received my first cancer diagnosis, my initial thoughts were stark terror, confusion, denial, the wish to turn back the clock, intense fear that I  wasn’t strong enough to handle the pain and terrible side effects that may come with my treatment, a sense that I’d ultimately get through this, deep panic that maybe I was wrong–and then came the self-protective haze to help cocoon me from these far too troubling worries.  But one thought that didn’t come to mind was concern that I wouldn’t be able to pay for the costs of my treatment.  After all, I was fortunate in that I’d just started working full-time shortly after graduating from college, and I was confident that my insurance would immediately provide coverage for these costs.  Silly girl: oh, how wrong I was.

For this month’s special edition of Evidence-Based Oncology’s “Cost and Value Edition,” I was asked to contribute a piece from my patient perspective concerning the financial toll that cancer treatment takes on so many patients.  As I began to compose the article, I found myself describing a soul-shattering confrontation I had with my insurance company as a stage III Hodgkin’s lymphoma patient at the age of 22–an experience I’ve never written about before since it was so upsetting, yet one that almost certainly will resonate with many of you who have been diagnosed with cancer.  But as I note in this piece, as terrible as that experience was, so many cancer survivors have gone through–and more and more are currently experiencing–far worse.  Because the fact is that due to the ever increasing costs of cancer treatments, particularly in this genomic era when the cost of one targeted agent may be upwards of $10,000 per month, such rising costs together with increasingly restrictive health insurance coverage, expensive deductibles, and increasing specialty visit and drug co-pays have created “financial toxicity,” an adverse effect with serious implications that may lead to changes in treatment-related decision-making, higher rates of nonadherence with oral chemotherapy drugs, and decreased overall quality and, potentially, length of life.

As I noted in the article, during this year’s American Society of Clinical Oncology (ASCO) Annual Meeting, I was struck by the fact that the phrase “financial toxicity” suddenly appeared to be on everyone’s lips.  I remember appreciating that this very real adverse effect of cancer treatment finally had a name—yet also thinking that though the term may be new, the condition itself was not.  Importantly, however, the crucial difference now is that an increasing number of oncologists, patients, advocates, and other stakeholders are speaking about this openly, honestly, and effectively and actively working on measures to prevent or better manage this serious toxicity of cancer.  Please click here to read my patient perspective in this month’s edition of Evidence-Based Oncology: “Financial Toxicity: a New Term, but Not a New Reality for Many Cancer Patients.”  And please consider sharing your thoughts here on this serious issue.

Sharing My Perspective as a Cancer Survivor with Cardiac Late Effects – in the June Issue of the “Evidence-Based Oncology” Journal

A few months ago, I received a message on LinkedIn from the Managing Editor of the journal Evidence-Based Oncology.  She explained that she had read my blog and was writing to ask whether I would consider contributing to their upcoming June issue.  The issue would be dedicated to the growing field of Cardio-Oncology, and she was requesting my contribution to provide a patient’s and advocate’s perspective as one who has personally experienced cardiotoxicity secondary to cancer treatment.  (Evidence-Based Oncology is a publication of The American Journal of Managed Care, a peer-reviewed journal dedicated to disseminating clinical information to managed care physicians, clinical decision makers, and other healthcare professionals in its aim to stimulate scientific communication in the continually evolving field of managed care. It serves as a platform for research, news updates, and opinions in the world of oncology that may impact healthcare access as well as coverage decisions.)

I greatly welcomed this wonderful opportunity to contribute to such a well-respected journal, particularly concerning the serious risk of developing late effects due to cancer treatment, a critical area that is at the heart of so many of my advocacy efforts. You can see my article on the American Journal of Managed Care (AMJC) website, and it was also posted today, June 1st, with the newly released June issue of Evidence-Based Oncology. I would be honored if, as a follower and/or reader of my Musings of a Cancer Research Advocate blog, you would take a moment to read my article on the Evidence-Based Oncology website and share it with your friends and colleagues, such as through Facebook, Twitter, or LinkedIn, to help increase awareness among patients themselves, their primary care physicians (so many of whom still know far too little about late effects of cancer treatment), and other healthcare providers concerning the very real risk of developing collateral damage from cancer treatment many years, often decades, following cancer treatment.  I hope that in some small way (or, even better, in a big way) that my and the other articles in this Cardio-Oncology series will truly make a difference in increasing understanding concerning this critical area for cancer patients and in reducing misdiagnoses / late diagnoses of and increased mortality due to these serious conditions.

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

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

Celebrating my 4th birthday with family and friends

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

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

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

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

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

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

This 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.”