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 where 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), 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, kindhearted 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…

Have you been affected by cancer or another serious illness and had similar remarkable experiences with your dog or puppy? If so, please be sure to share them with us in the Comments section.

For years now, I have been interested in writing a book entitled just as this blog posting is, “A Cancer Survivor’s Best Friend,” so I would love to hear from you with your own stories. It also would be fantastic if you would share your favorite photos of your puppies and dogs to join our Hall of Fame! (No worries: I would never use your photos unless you expressly give your permission, and the photographer would receive the appropriate photo credit.)

If you prefer to reach me off line, please send me an email at draemadden@gmail.com. Thank you, and be sure to hug your fur baby often today and every day!

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

A Fascinating Discussion: Bringing Expert Clinical Interpretation to Complex Tumor Cell Genomics

As a cancer survivor and an active advocate, I typically attend several cancer research symposia, conferences, and workshops every year.  But one of my favorite meetings is always the American Society of Clinical Oncology (ASCO)’s Annual Meeting, since it brings together tens of thousands of oncology clinicians, researchers, advocates, and other oncology professionals from around the world, where attendees learn from leading-edge scientific and educational sessions, clinical science symposia, oral abstracts, poster discussions, and plenary sessions.

During this year’s Annual ASCO Meeting in  Chicago, I decided to attend a half-day “pre-meeting session” on a topic that is particularly timely for every cancer patient, researcher, oncology clinician, advocate, and all other stakeholders involved in and impacted by our current genomic revolution in cancer.  Called Genetics and Genomics for the Practicing Clinician, the session included several expert panelists whom discussed cancer genetics and tumor genomics specifically for clinicians who work directly with cancer patients.  While discussing tumor (somatic) and inherited (germline) mutations and the tools and tests available to oncology clinicians, the panelists used case-based presentations and a multidisciplinary tumor board format to highlight crucial clinical considerations and to connect the panels’ content to real-world scenarios to help ensure that participants may apply what they learned to their daily clinical practice for the benefit of their cancer patients and family members.

genomics

This pre-meeting session was absolutely worth the price of my entire trip to ASCO this year.  Yet what I remember most is actually a question that was posed by a gentleman in the audience toward the end of the session.  As he directed his question to all the panelists, he made the following provocative statement: “I would argue that evidence-based medicine is incompatible with precision medicine and, as currently practiced, is not effective for cancer care.”  If you have read my blog in the past, you know that its tag line is “It’s all about the evidence,” so it may be of no surprise to you that I was intrigued by the gentleman’s statement.  At the session’s close, I introduced myself to him, explained my role as a cancer research advocate and blogger, and asked whether he would be willing to be interviewed concerning his perspective on precision medicine versus evidence-based medicine and, as it quickly emerged, his role as a classically trained human geneticist and molecular pathologist.  To my pleasure, he readily agreed.  For those of you who are cancer survivors, advocates, oncology clinicians, and any other stakeholder type affected by cancer (essentially everyone), I have no doubt that you’ll find this discussion fascinating, as it essentially serves as a primer for those interested in the genomic interpretation of tumor and inherited mutations in cancer and the many considerations and implications regarding such interpretation.

Without further ado, I’d like to introduce you to Gabriel Bien-Willner, MD, PhD, FCAP.

dr-gabriel-bien-willner

 

Board certified in Anatomic Pathology and Molecular Genetic Pathology, Gabe has deep expertise in next-generation sequencing (NGS) and a long history of providing critical insight into the molecular basis of disease in cancer patients.  You can click here to read our interview, published by the American Journal of Managed Care on my AJMC contributor’s page.  Or you can also read our complete interview here as a PDF by simply clicking on the link below:

Interview-with-Dr-Gabriel-Bien-Willner

I’d also like to take this opportunity to again thank Gabe for our truly fascinating and informative discussion and for his crucial ongoing efforts on behalf of all of us who have been, are, or will some day be affected by cancer personally.

 

“Facts are Facts and Will Not Disappear on Account of Your Likes”*

“Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passion, they cannot alter the state of facts and evidence.”
~John Adams, from The Portable John Adams
~~~~
I’ve always loved this quote, and it seemed the perfect way to begin my newest blog postings on the American Journal of Managed Care (AJMC)’s Contributor’s Page.  Those who regularly read my blog here know that in my roles as a cancer research advocate, patient, and cancer survivor, I’m always deeply concerned about anything that interferes with evidence-based, patient-centered clinician and patient decision-making.  This includes governmental mandates that are not rooted in the science, but rather, stem from political ideologies, agendas, or biases–as well as misleading, inaccurate, or overly simplistic dialogues about complex medical topics in the popular media that may lead folks to make potentially dangerous decisions about their health due to such misinformation.  I’m similarly concerned when the facts surrounding such complex information become inadvertently buried due to passionately held opinions or, far too often, purposefully due to inconvenient facts that are contrary to one’s mission or agenda.  That’s why I found it so important to express my concern as a patient advocate about the newly proposed Medicare Part B Drug Payment Model regarding its level of transparency and the evidence.  This is a critical issue, where it’s important for all Americans to get past the noise, emerge from the avalanche of misinformation, and learn the facts about this proposal, one where the first part of this Medicare experiment is deeply flawed (and, IMHO, should be completed eliminated), yet the second portion proposes value-based pricing when appropriately supported by high-quality evidence, including published randomized controlled trials, reviews, or evidence-based clinical practice guidelines.  Thus, I hope that you’ll click below to read my three-part series at the American Journal of Managed Care, entitled:
(*The quote that forms the title of this posting is from Jawaharlal Nehru, leader of India’s nationalist movement, India’s first prime minister after its independence, and Indira Gandhi’s father.)

 

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.

“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.

DMadden, EBO2

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.

My October Blues

October used to be one of my favorite months: the brilliant blue sky, the sharp crispness of the air, the beautiful turning of the leaves, and the fact that my birthday was just a few days before Halloween.  But 8 years ago, that all changed.

Back in October 2007, I had finally completed my chemotherapy.  I’d finished the uncomfortable tissue expansion sessions that were part of my reconstruction.  And the tissue expanders had finally been replaced with my silicone implants. But on that day, the fact was that I was still healing, completely exhausted, in the throes of so-called “chemo brain,” and once again hiding my bald head beneath a scarf to protect my scalp from the newly cold temperatures.  I’d just stepped into the grocery store and was dragging myself from aisle to aisle, trying to find something–anything–that might appeal to me, since everything I ate still tasted like it was thickly coated with metal.  And although I’d been wearing scarves or a wig while at work or out in public for many months, I was feeling more subconscious than usual–because everywhere I looked (and I do mean everywhere), all I could see was light pink, dark pink, muted pink, bold pink.   The yogurt, the soup cans, the magazines, the cash registers themselves, balloons (really, balloons?)—they were all covered with pink ribbons announcing “Breast Cancer Awareness Month.”   Of course, I’d noticed the ribbons during Octobers past, and I’d been donating to the American Cancer Society and Memorial Sloan-Kettering Cancer Center for many years. But on this day, I was seeing the ribbons with a completely different, somewhat embarrassed, and resentful perspective.  Perhaps selfishly, thanks to those Pink PINK Ribbons RIBBONS everywhere, I felt like there was an immense, gaudy, Coney Island-like flashing pink arrow in the air pointing directly at me.  And just minutes later, a stranger apparently did notice that strange ribbon-shaped arrow hovering over my head.  She walked right up to me in the produce aisle, leaned over, and whispered, “I like your scarf.  And I wanted to tell you that just about a year ago, I was exactly where you are today.  I’d just completed my treatment for breast cancer, my hair was just starting to grow back, and I felt like I’d been through hell and back. Was your diagnosis breast cancer, too? I wanted you to know that you’ll get through this and that you’re going to be just fine.”

She was a sweet person, and I did truly appreciate her kindness.  But I was also mortified.  I hated being so conspicuous–and quite honestly, I felt like a woman who was pregnant when complete strangers felt they had the right to touch her stomach. It was hard enough for me to go out in public every day exhausted, pale as a ghost, and without hair, hiding that fact beneath my scarves or my wig, so I essentially felt “outed,” albeit by a woman who had been through what I was experiencing and showing her support and kindness.  By the time I finally got out of the store, just the thought of a pink ribbon worsened the metal taste in my mouth.

AngryDog

Since that time, the pink ribbons in October have become more ubiquitous than the falling autumn leaves. They are at the heart of cause-related marketing, where it’s nearly impossible to get through a day in October without seeing a pink breast cancer awareness tee shirt, a pink fuel truck, pink blenders, pink guns (yes, really: guns!), pink beribboned bottled water containing BPA (a known cancer carcinogen), NFL players running onto the field in their pink gloves and socks, and on and on and on it goes.  But what many people still do not realize is that some of those companies that slap pink ribbons onto their products every October actually do not contribute to breast cancer research–or, in other cases, make contributions that are not tied to the purchase of the pink products in question.

That’s bad enough.  But in my humble opinion, there’s something much much worse–and that’s the steady stream of inaccurate, misleading, and downright false “facts” about breast cancer that appear everywhere you turn, “feel-good” story after feel-good story in every newspaper, magazine, and grocery store circular, and interviews touting how this or that celebrity “beat” breast cancer.  So this October, I’ve decided to do my best to debunk some of the myths that have become nearly as ubiquitous as those pink ribbons.

The first that immediately comes to mind is one of the most frustrating, because there are some in the medical community and a number of breast cancer organizations that continue to perpetuate this myth. You guessed it: “Mammography saves lives.” Or said another way, “mammography can only help women and couldn’t do any harm.” Believing these statements leads to a dark slippery slope paved with additional myths, falsehoods, and misunderstandings:

“She must not have gone for her annual mammograms: otherwise, she wouldn’t have been diagnosed with metastatic breast cancer.”

FALSE!

“After all, no one dies of breast cancer anymore.”

FALSE!

KomenAd with circle

Remember the 2011 ad above from Susan G. Komen–which has been described as the “most widely known, largest, and best-funded breast cancer organization in the United States”?  (The red circle cross-out is mine.)

The good news is that when this ad was released, Komen came under fire from scientific experts and knowledgeable patients and advocates due to its misleading statistics and its “blame the victim” message.  In fact, two professors from the Center for Medicine and the Media at The Dartmouth Institute for Health Policy and Clinical Practice, Lisa Schwartz and Steven Woloshin, published an essay in the British Medical Journal (BMJ) (2012;345:e5132) stating that Komen’s 2011 Breast Cancer Awareness Month campaign “overstates the benefit of mammography and ignores the harms altogether.  A growing and increasingly accepted body of evidence shows that although screening may reduce a woman’s chance of dying from breast cancer by a small amount, it also causes major harms, say the authors.  Yet Komen’s public advertising campaign gives women no sense that screening is a close call.  Instead it states that the key to surviving breast cancer is for women to get screened because ‘early detection saves lives. The 5-year survival rate for breast cancer when caught early is 98%. When it’s not? 23%.’ This benefit of mammography looks so big that it is hard to imagine why any woman would forgo screening.  But the authors explain that comparing survival between screened and unscreened women is ‘hopelessly biased.’ For example, imagine a group of 100 women who received diagnoses of breast cancer because they felt a breast lump at age 67, all of whom die at age 70. Five year survival for this group is 0%.  Now imagine the women were screened, given their diagnosis three years earlier, at age 64, but still die at age 70.  Five year survival is now 100%, even though no one lived a second longer. Overdiagnosis (the detection of cancers that will not kill or even cause symptoms during a patient’s lifetime) also distorts survival statistics because the numbers now include people who have a diagnosis of cancer but who, by definition, survive the cancer, the authors added.  If there were an Oscar for misleading statistics, using survival statistics to judge the benefit of screening would win a lifetime achievement award hands down, they wrote.”

Even more alarmingly, these authors conducted a survey where they “found that most US primary care doctors also mistakenly interpret improved survival as evidence that screening saves lives.  Mammography certainly sounds better when stated in terms of improving five year survival – from 23% to 98%, a difference of 75 percentage points. But in terms of its actual benefit, mammography can reduce the chance that a woman in her 50s will die from breast cancer over the next 10 years from 0.53% to 0.46%, a difference of 0.07 percentage points.  The Komen advertisement also ignores the harms of screening.  The authors noted that for every cancer detected by mammography, ‘around two to 10 women are overdiagnosed.’ These women cannot benefit from unnecessary chemotherapy, radiation, or surgery.  All they do experience is harm.”

AngryCrab1

The emphasis on the term “overdiagnosed” is mine:  because overselling of screening mammography has resulted in an enormous increase in the number of women who are treated for breast cancer–but most of whom would never have developed breast cancer if left untreated.  The fact is that for women of average risk, screening mammography has led to a dramatic increase in the diagnosis of Ductal Carcinoma in Situ (DCIS).  DCIS, which is an overgrowth of cells in the milk ducts, lacks the ability to spread, and more are beginning to argue that its description as “breast cancer stage 0” is a misnomer—because DCIS is not in fact cancer.  Rather, as breast surgeon and breast cancer oncology specialist, Dr. Laura Esserman, has described it, DCIS “is a risk factor for cancer. Many of these lesions have only a 5 percent chance of becoming cancer over 10 years.”   However, because there is not yet a way to accurately predict which patients are at most risk of progression to invasive disease, most cases of DCIS are treated aggressively, e.g., with breast-conserving surgery (lumpectomy), radiation, mastectomy, and/or in some cases, hormonal therapy. It’s been estimated that DCIS comprises up to 30 percent of “breast cancer” diagnoses. Yet for the majority with DCIS, the precancerous lesions will stay in place (i.e., “in situ”), will not become invasive, and therefore will never pose a life-threatening risk.  The result: overtreatment, where hundreds of thousands of women are undergoing aggressive cancer treatment and at risk for such treatment’s adverse and potentially late effects when they may not have needed such treatment. (Fortunately, ongoing research is taking place, including validation studies of an OncotypeDx for DCIS, with the goal of helping to identify patients who may need less aggressive therapy or no treatment other than “watchful waiting.”)

So the story of screening mammography for DCIS is not a success story.  Nor has it been a success story in detecting late-stage disease. As Dr. Esserman has stressed, if life-threatening breast cancers began as DCIS, the incidence of invasive breast cancers should have steeply declined with increasing detection rates. However, that has not occurred.

More Myths

However, cause marketing is not the only source of misleading or inaccurate breast cancer “facts.”  Breast cancer misinformation is often compounded or reinforced by celebrities who are breast cancer survivors. Remember Melissa Etheridge’s outrageous comments in AARP Magazine, when she and her buddy, Sheryl Crow, discussed how “They Beat Cancer” and provided “Lessons for All of Us”?  (Yes, I’m still furious.)  With just the headline, before the article even began, AARP’s magazine managed to perpetuate dangerous myths and to condescend to every one of their readers: women, men, those who have had or are currently receiving treatment for breast cancer, those who have lost loved ones to this terrible group of cancers, and those who will be impacted by breast cancer in the future.   Let’s start with the statement “beat cancer.”  It’s fortunate that both singers are doing so well and that their treatment has been effective for them to this point.  But tragically, approximately 25% of women with breast cancer have a recurrence, where the cancer has returned—and for women with estrogen-receptor positive (ER+) breast cancer, nearly 33 percent experience a recurrence.  Furthermore, over half of recurrences for ER+ breast cancer are detected more than 5 years following original treatment, in some cases decades later, as opposed to other breast cancer types that tend to recur within 5 years of the original diagnosis.  Research suggests that late relapse is most likely due to “tumor dormancy,” where there is a prolonged phase between cancer treatment and detected evidence of disease progression.  It’s thought that cancer cells that were able to escape the patient’s initial treatment are able to survive by hiding in a latent state for years or decades, ultimately coming out of dormancy and leading to incurable breast cancer metastases. So the important truth here is that we currently have no way of knowing who has “beat” breast cancer.  As Dr. Susan Love has explained, “Breast cancer can be cured.  In fact, we cure three-quarters of breast cancer; the problem is when somebody is diagnosed with breast cancer, we can’t tell that woman that she is cured—until she dies at 95 of something else.  So, we know we cure breast cancer, but we never know if any one particular person is cured at any one time.” Crow was reportedly diagnosed with stage I ER+ breast cancer.  Although Etheridge has disclosed that her cancer was stage II and that she has a mutated BRCA2 gene, I was not able to locate the hormone receptor or HER2 status of her breast cancer.  Though I sincerely hope that neither ever develops a recurrence, we simply cannot know whether either woman is “cured” of her breast cancer.

It was also infuriating to me when Etheridge, scientific expert that she is, said in the same interview: “This was my own doing, and I take responsibility.  When I got my body back in balance, my cancer disappeared.”  Excuse me? Breast cancer is NOBODY’S FAULT.  And no, her cancer didn’t “disappear” because she made healthy changes for her body. Sure, eating well and having a healthy lifestyle certainly is a smart choice for everyone.  But Etheridge no longer has any evidence of disease because she was treated for her cancer including surgery, chemotherapy, and radiation.

The Politics

And then there is Debbie Wasserman Schultz: since we know that if a politician is a breast cancer survivor, she’s an automatic expert on the science of breast cancer, right?  Schultz–like so many politicians before her–apparently has no use for inconvenient evidence.  When the U.S. Preventive Services Task Force (USPSTF)’s recently updated its guidelines for screening mammography based on scientific evidence, she loudly protested and politicized the issue.  In an interview with Marie-Claire last year, she was asked the following:

MC: “What do you make of the fact that so many health care organizations no longer advise young women to do breast self-exams?”

DWS: “To say that I don’t agree with recommendations that say women shouldn’t get mammograms at 40 or that self-exams aren’t necessary would be an understatement.  It is entirely appropriate and recommended to have a mammogram between 40 and 50.  If I didn’t do self-exams, I never would have found out about my BRCA2 mutation, which gave me a 40 to 85 percent chance of developing ovarian cancer by the time I was 50.  I mean, I was a ticking time bomb and I didn’t know it!  To me, those recommendations send a very strong message to younger women that they’re being written off—that they don’t matter.”

What Schultz didn’t say is that the U.S. Preventative Services Task Force recommendations stress the following: “The decision to start screening mammography in women prior to age 50 years should be an individual one.  Women who place a higher value on the potential benefit than the potential harms may choose to begin biennial screening between the ages of 40 and 49 years.”  Importantly, they also emphasize that “Women with a parent, sibling, or child with breast cancer may benefit more than average-risk women from beginning screening between the ages of 40 and 49 years.”

Schultz, joined by 61 other legislators, sent a letter to Health and Human Services Secretary Sylvia Burwell, where they asked that the department ignore the new draft guidance by the USPSTF—in other words, asking that the department ignore the evidence.  Schultz used her own story to make her case: “As a young survivor of breast cancer who was diagnosed at age 41, I am a living testament to the importance of breast cancer awareness in young women.  It is imperative that no one limits the insurance coverage of preventative options for young women, especially if they have an elevated risk.  While mammograms are not the only important part of preventative coverage, they play a vital role in detecting cancer in young women, in whom it is most deadly, and in raising breast health awareness.”

But did mammography actually “play a vital role” in detecting her cancer?  She has stated that she “had my first mammogram a few months before I found the lump” and that if the Task Force’s recommendation had been in place, she may not have had a mammogram and her own cancer would “not have been caught early.”   What’s more, she said, “We know that there are women that [sic] will die if this recommendation goes through.”  Yet here’s the thing: in a 2013 Glamour Magazine interview, she said that “My diagnosis was a couple of months after a clean mammogram. I had aggressive breast cancer, and it grew fast from the time I had my mammogram, or it was there and the mammogram missed it. Nothing is foolproof. You can’t make yourself crazy, but you have to be vigilant.”  So apparently, screening mammography did NOT detect her breast cancer.  Schultz’s own story does not support the case she has been trying to make so vociferously.

SharkComic3

Perpetuating the Myths

But something that I saw recently is probably the most upsetting of all.  On its Facebook page, BreastCancer.org shared responses from members of their Facebook community to the following question:

“It’s Breast Cancer Awareness Month.  Are there issues you feel are not getting enough attention?”

The responses concerning the topic of screening demonstrated the tremendous harm that results from the misinformation so freely distributed throughout October (and all year round). Here are just a few responses:

“Mammograms for 40 years upwards.”

 “Earlier mammograms!!!”

I began mammograms at 30 BC of questionable cysts and got Dx at age 49!  They should start mammos at age 30. Maybe have them every two years. Raising age to 50 is nuts.  I’ve had many friends Dx well before age 50.”

Earlier screening mammograms? How early? How young is too young: 40, 30, 20, 15? How many more women will be overdiagnosed and overtreated before the insanity stops?

But I do want to end my October rant on a high note.  The same BreastCancer.org blog also shared some responses concerning the critical topic of metastatic breast cancer–responses showing that there may be more and more folks who are seeing through all those pink ribbons to the truths about breast cancer:

“Stage IV Needs More!!!”

“More attention and funding to metastatic breast cancer, and less attention to ‘awareness.’  Even 3rd graders are aware!”

“Stage IV research.  Not enough of it.  Stage IV life expectancy.  Not enough of it…”

Bravo: Less attention to “awareness” and more to Stage IV and the critical need for metastatic breast cancer research funding.  So enough with the pink ribbon campaigns.  Ignore the celebrities who abuse the public platform they’ve been given to further spread misinformation.  And a big, firm wave good-bye to politicians who ignore inconvenient facts and use their power and influence to determine what’s best for us–since apparently we don’t know any better.

Incidentally, the nice woman who came up to me in the grocery store may or may not have been correct when she said, “I wanted you to know that you’ll get through this and that you’re going to be just fine.”  My breast cancer was ER+, so I’ll never know whether my breast cancer was cured–unless it recurs or I peacefully pass away of old age in my sleep.  The latter, please.

SharkComic2

A huge thank you to my sister, Ann-Dee, for these wonderful illustrations, which perfectly capture the sentiments I wanted to convey here.

Doth the Lady Protest Too Much? The Bruce and Caitlyn “Jenner-ization” of the Nation

This blog posting has a bit of a different focus than my blogs typically do.  But I have a rule: if something causes me to throw back my head in frustration or to start talking to my computer screen or TV, that means I need to write about it—if only to work out my irritation, to reach some type of catharsis if I’m fortunate, or to come to a conclusion that may even have a pearl of wisdom buried within.  So I sincerely apologize if any of my wonderful readers takes offense to anything I’m about to say—but please do stick with me to the end if you can.

So here it goes.  If I see one more article about Bruce/Caitlyn Jenner’s “rocking a gorgeous white Versace gown,” taking “a walk on the wild side when she stepped out” in a leopard-patterned wrap dress in New York City, or “conquering her fear of swim suits,” I’m going to start screaming, and I may not stop.  But as you’ll see shortly, my rant here is not so much about Caitlyn, but rather about what I’m calling today’s “Jenner-ization” of America.

At the age of 12, with the rest of the country, I watched in admiration when Jenner set the world record in the decathlon and received the gold medal during the 1976 Montreal Summer Olympics.  And his win was certainly exciting in the moment.  But I didn’t quite understand why so many seemed to worship him so–and for so long.  After all, having received his gold, he retired immediately after taking his victory lap around Olympic stadium.  Even he has joked that “Nobody has milked one performance better than me—and I’m damned proud of it.”  And years later, after moving to Newtown, CT, I learned some not-so-admirable facts about Jenner, making it even more difficult to consider myself a fan of the former athlete.

A bit of background first, and then on to why Jenner has not been Newtown’s favorite son for some time now.  The fact is that Jenner lived right here in Newtown, and this is where he spent his last 2 years of high school.  In addition to competing in track at Newtown High, Jenner also played on the football and basketball teams, and he was voted Most Valuable Player of Newtown’s track squad.  He attended his senior prom with the young lady who became the wife of Newtown’s former first selectman.  And a few months after winning the gold medal in Montreal, Jenner returned to Newtown to attend a ceremony at Newtown High, during which they christened “Bruce Jenner Stadium.”  Just a few months later, tragedy struck the Jenner family:  his younger brother, who was just 18 years old, was killed in a car accident in Canton, CT while driving Jenner’s Porsche, which had been a gift to celebrate the Olympian’s success.  Though some speculate that his brother’s tragic death may be at least part of the reason that Jenner appears to have kept his distance from Newtown after that time, his name remained on the Newtown High School stadium for nearly 25 years.

And here’s where many Newtownians’ opinions of Jenner changed.  Former Newtown High School principal, William Manfredonia, told the Danbury New-Times that in 1997, school officials repeatedly tried to contact Jenner–whom at that time was living a charmed life as an actor, announcer, and motivational speaker–asking “for both financial and moral support” for a $400,000 renovation to the stadium.  Manfredonia said that “I wrote to [Jenner] twice to see if he could help, and I even called, but I never even got the courtesy of a reply letter.”  Michael Kelley, who was then the president of Newtown High School’s Blue and Gold Booster Club, also made repeated calls to Jenner while working with the club to help raise money for the new stadium.  “I never spoke to him personally, but I called his office and home numerous times,” Kelley told The News-Times. “His wife told me he was involved in other commitments and was not able to help us.”

At that time, I was a relatively new resident of Newtown, and my husband had already been living here for many years.  We were both enamored and protective of our sweet home town.  Needless to say, upon learning that Jenner did not even have the common courtesy to pick up the phone to return a call, let alone contribute to the stadium that bore his name, we were outraged at first and then simply disgusted.  Apparently, he simply was not interested in contributing to the warm, sleepy town where he honed his athletic skills.  Nor did he appear to have any inclination to help with a renovation to the “Bruce Jenner Stadium,” so that new generations of young men and women could develop their own athletic skills and perhaps go on to reach some semblance of the fame, fortune, and success that he had achieved.  Of course, it was completely within his right to choose to spend and not to spend his fortune in any manner that he wished.  But the result was that many of us who love Newtown lost a great deal of respect for him, the man who was Bruce Jenner at that time.

So that was that.  In October of 2001, the school board unanimously approved a name change for the stadium, calling it the “Blue and Gold Sports Stadium,” and they also renamed the athletic field behind Newtown High School as the “Harold S. DeGroat and Ann Anderson Sports Complex.”  Speaking to The News-Times, long-time Newtown resident Joan Crick said that “the stadium never should have been named after Jenner; it should have been given the name of Harry DeGroat, a long-time high school sports coach and physical education teacher, who died nearly 40 years ago. ‘He did so much for the town and is remembered by so many for his work and achievements,’” she stressed.  Kelley somewhat agreed: “I think we made the right decision in choosing his [Jenner’s] name for the stadium at the time, but over the years there hasn’t been a connection between Mr. Jenner and Newtown.”  The high school stadium, which is still known as the Blue and Gold Sports Stadium, contains a plaque listing the names of the many people who contributed toward the stadium’s improvements.  One former Newtown resident’s name is notably lacking.

Fast-forward to the very different world in which we live today.  So now you know why I have not considered myself a fan of Jenner for some time.  I just happen to think that not deigning to take a phone call from an official of your former home town—a town that honored you and celebrated your accomplishment by putting your very name on their stadium–was simply a rotten, thoughtless thing to do.  But as hinted earlier, that’s not why I’m writing this blog: what prompted me to do so is my concern for what’s been happening to our beloved country.

Before you start shaking your head, thinking that I’m a transgender-phobe (is that a word yet?), that is absolutely not the case.  If Bruce was miserable being Bruce and is truly happy now being Cait, I’m genuinely happy for her.  There is far too much suffering and pain in this world, and it’s always a wonderful thing when people are able to make changes that result in their leading much happier lives.  Also, I truly hope that by sharing her story, Cait is able to provide comfort and hope for those who are currently struggling with gender identity–and perhaps help to prevent some of the terrible experiences that impact so many transgender youth, such as family rejection, harassment, discrimination, violence, and other severe stressors that may contribute to the high suicide attempt rate among transgender people.

But sadly, with that said, it certainly appears to some of us that this is just as much—or perhaps much more–about Bruce doing what he wanted to do and making a pretty penny than it is about a strong sense of altruism and genuine concern for others.  Rather, for many, this seems more like another episode (literally) in our country’s current sensationalized reality TV show culture.

When Diane Sawyer asked Jenner (who was not yet going by Caitlyn) about whether this was a publicity stunt for the “Keeping Up with the Kardashians” show as many in the public were convinced, he rolled his eyes, laughed,  and sarcastically said the following:

Jenner: “Ohhh noooo, we would never do that, Diane! Are you telling me that I’m going to go through a complete gender change, okay, and go through everything you need to do [for] that for the show?  Sorry, Diane, it ain’t happening, okay? Yeah, we’re doing this for publicity … yeah, right.  Oh my God, Diane, do you have any idea what I’ve been going through all my life, and they’re gonna say that I’m doing this as publicity for a show?  Oh my God.  There are lots of shows out there.”

jenner

Sawyer: “Yes, but there’s a shameless selling of everything these days.”

Jenner (now leaning forward and pointing at Sawyer): “And I get that, but what I’m doing is going to do some good.  We’re going to change the world.  I really firmly believe that we’re going to make a difference in the world with what we’re doing.  And if the whole Kardashian show and reality television gave me that foothold into that world—to be able to go out there and really do something good, I’m all for it. I got no problem with that.  Understand?”

“Understand?” My goodness!  It would be difficult not to regard Jenner’s tone and body language as sarcastic, didactic, and just downright rude.  And it was interesting to me that he kept using the word “we.” Wouldn’t one who was genuine about what he was saying use the word “I”?  Doesn’t his use of the universal “we” seem a bit contrived and suggest that he was referring not so much to his family members, but rather to the “cast members” of the Kardashian television show?  Perhaps the lady doth protest too much?

Yes, in my humble opinion, she “doth.”  Over the last several weeks, every single time I’ve gone online to conduct a search on Yahoo, there were not one, not two, but several stories about Caitlyn.  It was the day when I saw six, yes, SIX of these stories listed one after the other that I’d had enough.  And what did these “news” stories cover?  Let’s see: where Jenner went to lunch; how “stunning!” she looked while wearing “a tight black dress”; how stylists everywhere are finding “her classic and timeless hair and makeup flawless”; and the fact that she was excited about @Caitlyn_Jenner stealing the “Twitter crown” from @BarackObama by receiving 1 million followers the most quickly (where Caitlyn’s reaction was a squealing “Let’s go for the record! I love records!”).  Good grief.  Doesn’t this non-stop, frivolous, “glam” coverage about hair, nails, make-up, and social media highly suggest that much of this is about furthering celebrity and piling up those pennies?  And how about the fact that Jenner called a “family meeting” to break the news about his transgender plans to Kim, Khloe, Kylie, and Kendall Kardashian–during which E! cameras were rolling to capture the moment for an upcoming episode of “Keeping Up with the Kardashians”? What was that you said about publicity?  “Ohhh noooo, we would never do that, Diane!”

But for many, perhaps worse yet was when the media, Hollywood, and many others started throwing around the word “Hero” to describe Jenner’s transgender transition.  The icing on the cake was this quote from Kanye West, the husband of Kim Kardashian, when speaking to Jenner about her transition: “I think this is one of the strongest things that have [sic] happened in our existence as human beings, that are [sic] so controlled by perception.  You couldn’t have been up against more.”  Besides being barely understandable, really?  In my humble opinion, it’s difficult to reconcile “hero” as an appropriate term here—and I’m certainly not the only one who feels this way.  Just one example is former Virginia Beach Navy SEAL, Kristin Beck, who has not minced words concerning the manner in which Jenner is revealing her transgender transition.  In an interview with NewsChannel 3, Northeast NC, posted on May 13 this year, Beck bluntly stated, “He’s no hero.  I’m seeing too much of that money-grubbing reality show crap.”  Two years after retiring from the Navy, Beck revealed her transgender transition in a 2013 interview with CNN’s Anderson Cooper.  Beck strongly feels that Jenner’s approach to spacing out bits and pieces of information is less than helpful to the LGBT community.  “He’s keeping everything secret and parsing out information to fish out another 17 million viewers to make another million bucks.  It’s shameful, and you’re not a hero if all you’re doing is trying to make money.  You can’t be an example if all you are is just that reality show machine.”  Beck has written a book on her transgender journey and created a documentary called “Lady Valor.”  She explained that “I took the road where I made a documentary, did everything real quick, and just said, ‘Hey, here it is; here’s the information if you want to know about it.’  And now I’m going to universities and speaking for free at colleges and universities all around the country.  I’m barely breaking even, but I’m trying to show people who we are as normal folks, as something you can look and say, ‘Okay, I can understand it.’”

Beck, who is running for Congress in Maryland, emphasized that “There are kids, transgender LGBT kids who are killing themselves every day because they have no hero to look up to.  They see no future.  They feel isolated, and this could have been a really good example of what you can do and could have saved some lives.  But instead, you’re going to make a few bucks.  Disappointing.”

And concerning Kanye West’s statement that Jenner “couldn’t have been up against more”?  It is terribly sad that Jenner was unhappy for so long.  But Jenner became a celebrity many moons ago, had more opportunities than most in this life, and was immediately  buoyed and supported by other celebrities when he revealed that he was now Caitlyn.  Just to name a few examples, singer Demi Lovato dedicated a song to “American Hero, Bruce Jenner.”  Celebrity after celebrity tweeted their support to Jenner after her Vanity Fair cover, Culture Club’s audience gave her a standing ovation, and she is now surrounded by dedicated hairstylists and assistants to ensure every hair is in place and every outfit is “stunning.”  So Jenner “couldn’t have been up against more?”  In all seriousness, isn’t it time to stop the sensationalizing, the rubber-necking, the lowest-common-denominator impact of reality shows on our true reality?  The popular media has played a disgraceful role in this, with the result being more and more people who are “famous for being famous”—the Kardashian sisters, Paris Hilton, Nicole Richie, and on and on it goes.  Instead, imagine what a better world this could be if the media paid much more attention to the TRUE heroes all around us–many of whom in reality “couldn’t have been up against more”?  For example, wouldn’t you like to learn more about the following remarkable people?

Unsung Heroes in Our Midst

  • Do you recognize the names Ali Viator Martin and Jena Legnon Meaux? I did not hear a single news story about them and only learned of their bravery due to my brother-in-law’s discussing what had happened to them.  The two teachers were recently watching a movie in Lafayette, Louisiana when a gunman opened fire in their crowded theater, killing two people and injuring nine others, including Martin and Meaux, who were both shot in the leg.  One of these brave teachers immediately threw herself on top of her friend when the shooting started to protect her from the ongoing gunfire.  The other managed to drag herself to a fire alarm and pulled it to alert everyone in the building of the danger.  The overwhelming majority of the news coverage focused on … (you guessed it) … the motivations of the killer, who shall remain nameless here, rather than on these two brave women who undoubtedly saved many lives.

beaux-and-martin

 

  • Have you heard the name Kimberly Koss? She is a biomedical scientist, mother, and grandmother who delayed her treatment for a particularly aggressive type of breast cancer (known as triple negative breast cancer) to donate her tumor cells for research.  Speaking to Yahoo! Health, Dr. Koss explained that “This will be tremendously helpful in figuring out what causes this type of cancer and how to treat it…Every day, that gives me hope.”  Her friend and colleague, Dr. Keith Jones, is heading the research team at Loyola University Chicago Stritch School of Medicine, where they are using Koss’s tumor cells in an effort to create an immortal cell line.  Crucial for cancer research, immortalized cell lines are a population of cells that would normally not proliferate indefinitely yet, due to mutation, are able to evade the normal loss of the ability to grow and divide and therefore can continually proliferate.  Such laboratory-grown human cells, which may be cultured in mice, are critical for testing theories about the underlying causes of and treatments for cancers for translation into clinical advances.  Koss’s cancer was highly invasive, with the cancer cells’ undergoing cell division rapidly, making them good candidates to successfully proliferate in cell cultures.  However, chemotherapy would have damaged the tumor cells, making them less likely to survive in cell culture.  For triple negative breast cancer, many basic questions remain, and though there are some triple negative cell lines available for research, these tend to be from patients who had received chemotherapy prior to removal of the tumor.  In addition, as Dr. Jones told Medscape Medical News, Koss’s cells contain mutations not seen in the other cell lines.  “This will allow us to confirm that the cell lines used for study reflect the actual tumor tissue the way it was in the body, before it was extracted.  This is an opportunity we did not have before.”

Due to Koss’s decision to donate her tumor cells to research, she started to receive her chemotherapy after her mastectomy rather than before surgery.  Her chemotherapy therefore was started more than two months later than her doctors had recommended.  (For triple negative breast cancer, presurgical [neoadjuvant] treatment is often recommended in an effort to shrink the tumors and improve patient prognosis.)  Dr. Jones confirmed that some of Dr. Koss’s tumor cells have been growing in culture for about six months, but explained that another six months or so are required to determine whether they have successfully established an immortalized triple negative breast cancer cell line.  Though this is extremely encouraging news, there is also upsetting news: Dr. Koss’s breast cancer has now metastasized to her chest wall and lungs.  She also has developed cardiotoxicity secondary to her treatment, including early-stage cardiomyopathy and heart failure.  In speaking of his friend, Dr. Jones noted that, “It’s always a little scary to hear a friend say they were taking a chance on something that could cost their life or health.  I don’t know if, in the same situation, I could do the same.  It’s very brave.”  He also emphasized, “Part of her legacy will be what this does for other women.”  Now THIS is an American hero.

Dr. Kimberly Koss

Dr. Kimberly Koss. Loyola University

  • Did you know that more and more Americans, many of whom are veterans of the Iraq War, are volunteering on their own and creating several emerging groups to fight alongside local Kurdish Peshmerga forces and Christian militias against the terrorist group ISIS in Iraq and Syria?
  • What about the cancer researchers who are devoting their hearts and souls to developing life-saving treatments, while quietly struggling to keep their labs and their critical research afloat as available grant funding continues to disappear? Heroes in my book.
  • And those patients with cancer and other life-limiting or terminal illnesses who participate in clinical trials, understanding that there may be little or no direct therapeutic benefit for themselves and a very real possibility of significant harms, yet who do so for the hope of future patients? We all owe them a tremendous debt of gratitude: true heroes.
  • What about the young spokesman for Shriners Hospitals, the adorable little boy with the huge heart with whom so many of us have fallen in love? In his role as a Patient Ambassador, 12-year-old Alec Cabacungan has brought Shriners Hospitals to the attention of countless folks who before were unaware of the critical orthopedic, spinal cord injury, burn, and other specialty care they have provided to over a million children regardless of families’ ability to pay.  Cabacungan has been diagnosed with osteogenesis imperfecta, a genetic disorder characterized by bone fragility, and he has been affected by more than 50 bone fractures in his young life.  Shriners Hospitals’ “What is Love?” campaign has brought Alec’s radiant smile into millions of living rooms across the country, with the goal of bringing further charitable donations to help support Shriners’ ongoing critical work.  Alec, all of the other Patient Ambassadors, their families, the clinical staff and researchers at Shriners: heroes.  All of them.

alec

alec shriners

  • How about the millions of folks across our country who serve as caregivers for family members—for their children, spouses, adult parents, or siblings–with terminal or life-limiting diseases, including cancer, Alzheimer’s disease, and other dementias? Being a primary family caregiver can be one of the most emotional experiences one may have: it’s often physically, psychologically, and financially draining, stressful, frustrating, upsetting, and it’s never easy.  Yet for so many families, it can also be deeply rewarding and joyful.  As Edward Albert said so eloquently, “The simple act of caring is heroic.”
  • And though I could go on and on, I cannot conclude here without including the volunteer firemen in our communities, often our friends and neighbors, who run toward burning homes, buildings, World Trade Center towers, rather than running away like most of us, risking their own lives to save ours. Our American Heroes.

No, winning an Olympic gold medal, becoming a reality television star, and undergoing a transgender transition in front of the rolling TV cameras do not a hero make.  But today, as I was again trying to ignore the deluge of stories about Jenner’s gowns, swim suits, and latest trips on the town, I saw a short article for the very first time that specifically described what they called Jenner’s transgender activism and her concern over the high suicide rates seen in the transgender community.  Is it possible that over the rush of applause and the flashing cameras, Jenner has begun to hear the words of folks like Beck and to recognize that it’s not all about glitz, glam, celebrity, and cash?   Perhaps she has started to recognize her privileged status and what true struggle is like?  Might she start to worry less about the dress and direct the full focus and determination she had shown so famously as an Olympian to help the next generation of transgender youths feel less isolated and more hopeful?  Dare we hope that she, the media, and so many in our reality show culture will finally begin to recognize that it’s not what transpires in front of the cameras and what’s seen in the public view, but rather, as John Wooden famously said, that “The true test of a man’s character is what he does when no one is watching”?  We shall see.