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

NIH is Now Recruiting for Volunteers for Coronavirus Antibody Study

Crucial Research Objective: How Many Asymptomatic Adults Have Covid-19 Antibodies?

Photo by cottonbro on Pexels.com

A new study has started to recruit volunteers at the National Institutes of Health (NIH) in Bethesda, Maryland, to help determine how many adults in the United States have antibodies to the COVID-19 virus yet do not have a confirmed history of infection. Detection of antibodies in the blood indicates prior infection with the virus.

Known as a “serosurvey,” NIH researchers will collect blood samples from as many as 10,000 volunteers and will analyze these samples to obtain much-needed data for epidemiological models. These results will be crucial in helping to answer critical questions that remain open through the following:

  • obtaining evidence concerning the extent that the virus has spread undetected throughout the United States
  • shedding further light on which patient populations, communities, and regions are most affected
Photo by Pixabay on Pexels.com

Per Anthony S. Fauci, M.D., a world-renowned infectious disease expert and Director of the NIH’s National Institute for Allergy and Infectious Diseases (NIAID):

“This study will give us a clearer picture of the true magnitude of the COVID-19 pandemic in the United States by telling us how many people in different communities have been infected without knowing it, because they had a very mild, undocumented illness or did not access testing while they were sick…These crucial data will help us measure the impact of our public health efforts now and guide our COVID-19 response moving forward.”

Photo by Edward Jenner on Pexels.com

The study’s investigators will test the study volunteers’ blood samples for SARS-CoV-2 antibodies, which are proteins produced by the immune system to attack specific infectious agents. If a person’s test result is positive, he or she has previously been infected with COVID-19 and may have had no or extremely mild symptoms. In contrast, most diagnoses of the virus have been based on molecular tests that use a cotton swab to confirm the presence of the virus in a person’s airways. Although such molecular testing provides results relatively rapidly and effectively confirm active infection, they are unable to detect whether a person had previously been infected with the coronavirus and recovered.

Photo by Markus Spiske on Pexels.com

The study researchers will analyze blood samples for two different types of antibodies using an enzyme-linked immunosorbent assay (ELISA) developed at the NIAID and the National Institute of Biomedical Imaging and Bioengineering (NIBIB). The two enzyme types are anti-SARS-CoV-2 S protein IgG and IgM. ELISA is a rapid immunochemical test that involves an enzyme to detect a small molecule (called a ligand) in a liquid sample using antibodies directed against the protein in question. For those samples that confirm the presence of antibodies against COVID-19, the NIH investigators may also conduct further testing to analyze immune response to the virus to help determine why such study participants’ cases were asymptomatic or extremely mild compared to those with severe responses that have resulted in hospitalization.

How Can You Enroll in This Study?

People who can be considered for this study must:

  • Be over the age of 18 years who are healthy
  • Live anywhere in the United States
  • Not have current symptoms associated with Covid-19 infection
  • Not have a confirmed history of COVID-19.

Potential participants will be asked to provide their consent to enrollment by phone.

Once participants are enrolled in the study, they will attend a “virtual clinic visit,” during which they will be asked to complete a health assessment questionnaire and to provide the study team with basic demographic information, including sex, age, race, ethnicity, and occupation. They will then be asked to submit blood samples.

For those study participants who work at the NIH Bethesda Campus in Maryland, they will have their blood samples drawn at the NIH Clinical Center.

Other participants will conduct at-home blood sampling. A medical device firm based in California, Neoteryx, will supply the study with at-home blood collection kits. The study investigators will ship a Mitra®Home Blood Collection Kit to each participant, which will include detailed instructions on the necessary steps to collect a microsample of blood and mail it back for analysis. The Neoteryx website linked above also has instructional videos on how to accurately obtain a blood sample using the Mitra®Home Blood Collection Kit

Kaitlyn Sadtler, Ph.D., study lead for laboratory testing and chief of the NIBIB’s Section for Immunoengineering, stressed that using at-home blood collections is safe, effective, and easy-to-use. ” She emphasized that “With a small finger-pick, volunteers can help scientists fight COVID-19 from their homes.”

What are the Next Steps for Joining This Coronavirus (COVID-19) Pandemic Serum Sampling Study?

People who are interested in participating in this study should contact clinicalstudiesunit@nih.gov. You can locate additional information on the study by visiting the NIAID’s website at Questions and Answers and by visiting ClinicalTrials.gov using the identifier NCT04334954.

Social Distancing:

How are You and Your Family Coping?

Many of us throughout our country are “sheltering in place,” working remotely (some for the very first time) and rarely leaving our homes or apartments except to walk our dogs and purchase groceries, medications, pet food, and additional necessary home supplies.

Photo by Alan Quirvu00e1n on Pexels.com

Please leave a comment below, discussing any suggestions or tips that you’ve found helpful in coping with our world as it is today.

Have you found any creative ways to prevent feelings of social isolation?

For example, click here to see one bored couple’s amazing “mini art gallery” that they made specifically for their pet gerbils. Absolutely incredible, creative, and adorable!

Have you found fun ways to keep your children engaged with their remote schoolwork? Have you come up with great ideas to help reduce your kids’ screen times on their smart phones, tablets, and other devices?

Photo by Julia M Cameron on Pexels.com

Have you finally taken an online course on a subject you love, taken up a new hobby such as baking, or started to tackle a project you’ve never had time for before?

Photo by Jill Wellington on Pexels.com

Do you have any helpful tips and resources for those who are working from home for the first time?

Please consider sharing your ideas here, so that we can provide one another with helpful, positive, creative, and educational ways to get through this scary time together. I pray that you, your families, and all your loved ones are safe and well.

A Brave or Terrified New World?

Dear Readers,

As you know, it has been quite some time since I posted my last blog.  But due to the recent events that have so dramatically changed our nation, states, local communities, and family and professional lives, I’ve been highly concerned that so many have lost sight of the evidence–or have actively sought to obscure the evidence that is being acquired due to personal and political agendas rather than concern about the health, well-being, and safety of the American people.  Again, as I’ve stated in my blog’s tag line since day one, isn’t it “all about the evidence,” so that the American people receive the accurate information they deserve vs. misinformation and misguided falsehoods that do not provide, but instead conceal, the truth?

“Facts do not cease to exist because they are ignored.” 

― Aldous Huxley, Complete Essays 2, 1926-29

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“The charm of history and its enigmatic lesson consist in the fact that, from age to age, nothing changes and yet everything is completely different.”

  ― Aldous Huxley

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The words of Aldous Huxley, the author of the classic dystopian novel “Brave New World,” were certainly prescient and relevant today.  This is not the first occasion where the world has witnessed global transmission of a potentially deadly infectious disease.  After all, most of us remember hearing about the 1918 influenza pandemic, which is considered the most severe pandemic in history.   And sadly, at that time, certain public officials repeatedly told half-truths or lied—where they were assisted by the press—though for some different reasons than we’re seeing today.

A History Lesson

The 1918 pandemic was also known as the “Spanish flu,” which  is thought to be a misnomer, since its origin is still unknown.  However, theories suggest that it may have first occurred in China, the United States, the United Kingdom, or France.

The virus that caused the pandemic was found to be an H1N1 virus containing genes that probably originated in birds (and is therefore known as a “zoonotic” virus).  The pandemic is thought to have caused the deaths of more people in absolute numbers than any other disease of all time.  The number of deaths has been repeatedly revised by researchers and epidemiologists—and every revision has been higher. 

Per the Centers for Disease Control (CDC), it’s estimated that approximately 675,000 deaths occurred in the United States.  In addition, a 2002 epidemiologic study estimated that globally, the death toll was between 50 and 100 million people.

Unlike with our current coronavirus pandemic, during the 1918 influenza pandemic, mortality was highest in children younger than 5 years of age and adults aged 20 to 40 years—and, as with our current pandemic, adults 65 years of age and older.  The CDC notes that the high mortality rate in otherwise healthy people (including those aged 20 to 40 years) is considered a unique characteristic of the 1918 influenza pandemic.  It’s estimated that the mortality rate was greater than 2.5%.  (It’s only possible to estimate, since there was not the capacity for detailed record-keeping for testing and diagnoses of infectious diseases as there are today.  Thus, such estimates must rely on comparing actual mortality to a baseline mortality level that would typically have been seen without influenza.)

Nearly 15 years ago, in 2005, the Institute of Medicine held a US forum on Microbial Threats, and a workshop summary was published by the National Academies Press (US), entitled “The Threat of Pandemic Influenza:  Are We Ready?  In the first chapter, “The Study of Influenza,” the editors (Knobler SL, Mack A, Mahmoud A, et al.) noted that “…the world is vulnerable to the next pandemic, perhaps even more than in 1918, when the pace and frequency of global travel was considerably less than today.  As the contributors to this chapter demonstrate, there is still much to be learned from past pandemics that can strengthen defenses again future threats.  The chapter begins with a review of the events of 1918, the lessons they offer, and the historical and scientific questions they raise. It describes the epidemiology and symptomology of that deadly viral strain, limited efforts toward prevention and treatment, and the resulting social disruption and its exacerbation by the actions of public officials and the media.”  (The emphasis is mine.)

Back in 1918, how did our country react?

“The first casualty when war comes is truth.”

Per the editors, “In the United States, national and local government and public health authorities badly mishandled the epidemic, offering a useful case study.”  (Again, the emphasis is mine). 

They stressed that the context of current events at that time was critical.  The United States and every other country at war took steps to try to control public perception and to prevent hurting morale.  Therefore, at first, the press in those countries did not report the outbreak.  (In contrast, the press in Spain, which was not engaged in the war, did report the outbreak.  As a result, it is thought that that is the reason the pandemic was referred to as the “Spanish flu.”)

In 1917, a senator from California, Hiram Johnson, famously (or infamously) stated “The first casualty when war comes is truth.”   In fact, the federal US government passed a law stating that to “utter, print, write, or publish any disloyal, profane, scurrilous, or abusive language about the government of the United States” was punishable by 20 years in jail.  In other words, Americans could be jailed for criticizing the US government—even if people were speaking the truth.  The government also engaged in a propaganda campaign, where one of the architects noted, “The force of an idea lies in its inspirational value. It matters very little if it is true or false.”

What Were the Consequences? 

There certainly were not positive effects.  The majority of officials in local regions repeatedly lied or told half-truths with the goal of preventing damage to morale and the overall war effort.  “They were assisted—not challenged—by the press, which although not censored in a technical sense cooperated fully with the government’s propaganda machine.”

As the outbreak spread from one town or city to another, most officials would urge the public not to be concerned and that public health efforts would prevent them from being affected.  They also repeatedly emphasized at first that the outbreak was not the Spanish flu, but simply “ordinary influenza”—and later that the “worst of the flu is behind us.”

For example, Chicago’s public health commissioner stressed that he would do “nothing to interfere with the morale of the community … It is our duty to keep the people from fear. Worry kills more people than the epidemic.”

This in fact became a nationwide mantra: i.e., that “Fear kills more than the disease,” and a popular periodical, Literary Digest, echoed the sentiment by emphasizing that “Fear is our first enemy.”

Officials in various towns and cities closed schools, houses of worship, theaters, and many other public places.  Some ordered everyone to wear masks, to avoid shaking hands, and to stay indoors.  Libraries stopped lending books.  In addition, regulations were passed that banned spitting.  

A sign in the Philadelphia Navy Yard warning against the Spanish flu, noting that there were 1,500 cases in the yard alone and 30 deaths.
~Everett Collection

While imposing such measures, some community officials continued to provide reassurances, stressing that “there is no need for panic or alarm.”  Yet despite these false reassurances, a rapidly increasing number of people witnessed the excruciating deaths of their spouses, children, brothers, sisters, grandparents, neighbors, and friends.  The disconnect between what they were repeatedly hearing from officials and echoed by the media completely destroyed any sense of trust and credibility, escalating fear and transforming into panic.  Most would agree that throughout history, America has been about neighbors helping neighbors.  Yet in 1918, due to all the factors above, many of those who had not yet become infected by the virus were simply too frightened to go anywhere near those who were ill.

What Lessons Were Learned?

Fast forward to the world we live in today.  What lessons, if any, have we learned about how to best handle the pandemic that we’re now facing?  First and foremost, it’s critical that our government officials and the media maintain (or improve) their credibility.  The American people deserve the facts, which must be based on evidence.  There should be no down-playing of reality, no false reassurances, no sensationalizing that the “sky is falling,” and no “reporting” that is given through the lens of opinion and bias versus objective truth-telling:  i.e., what we know, what we do not yet know, and all efforts that are taking place to determine those answers to develop evidence.

As discussed above, during the 1918 pandemic, many officials in local regions repeatedly told half-truths or lies in an effort to prevent damage to morale and the country’s war effort.  They were not challenged by the press; rather they were assisted by the press, which cooperated fully with the government’s propaganda.

And today, what are we seeing instead?  Many would argue that rather than bringing critical information to the American people, the popular media is again proprogating false information—but this time, it is not doing so in an effort to help prevent fear and panic.  Rather, it appears to many that their mission is to thwart the Trump Administration’s efforts and that they are much more concerned with pressing a political agenda than accurately keeping Americans informed about the global pandemic.   In fact, to some, it appears that the media is downright dismissive of crucial steps achieved to date concerning the pandemic through efforts of federal officials and private industries coming together to fulfill critical needs.  Just to name a few examples, these include the following:

  • Reduced restrictions on telehealth services
  • Eased Department of Transportation hour-of-service regulations for commercial truck drivers who are transporting emergency relief,  including testing equipment, necessary medical supplies, hand sanitizers, disinfectants, and food for emergency restocking of stores
  • The Trump Administration’s coordination with the National Association of Manufacturers that will enable up to 40 companies to produce ventilators, test kits, gloves, protective suits, and vital-sign monitors
  • Reduced Food & Drug Administration (FDA) regulations on distribution of test kits

A medical staff member using test systems for the diagnosis of coronavirus. (AP)

  • Eased restrictions on states, allowing them to take responsibility for test kits developed and used by labs within their state borders
  • Allowance of licensed, healthcare professionals to work in states other than where they were certified
  • The private company “MyPillow,” shifting 75% of its production to manufacturing cotton face masks for healthcare workers
  • Reduced restrictions enabling some US and European distilleries to add hand sanitizer to their product ranges

Public Opinion?

It has come to the point where many Americans strongly believe that the popular media is in complicity with Democrat politicians.   In fact, in a Gallup poll released on March 26th, 2020, when participants were asked whether they approve or disapprove of the way a number of US leaders and institutions have responded to the coronavirus outbreak, “Every single group or individual listed in the poll had a higher approval than disapproval rating, save one: the news media. A mere 44 percent of respondents said they approve of the way that the media has handled the COVID-19 crisis, while 55 percent disapprove.  Contrast that with what the poll reported on the public’s opinion on President Trump:  Sixty percent approve of his response, and 38 percent disapprove.  Vice President Pence had even higher ratings, with 61 percent approval compared to 32 percent disapproval.  Several institutions included in the survey had extremely favorable ratings.  Eighty-eight percent of respondents said they approve of the job that hospitals in the US are doing, for instance, and only 10 percent disapprove.  More than 80 percent approve of the response from their state government, their employer, and their child’s school or day care. Even Congress is above water with the American public, with 59 percent approval and 37 percent disapproval. Only the news media was under water, and that’s not terribly surprising.  It’s worth noting, though, that when Gallup posed the same questions to respondents broken down by party affiliation, it’s clear where much of the disapproval of the media is coming from: Sixty-one percent of Democrats said they approve of the media’s job, while just 25 percent of Republicans said the same.”

Lose-Lose Situation?

Those Americans who believe that the popular media is in complicity with Democratic politicians point to several recent examples, including the below:

  • Through much of his presidency, many in the media have repeatedly criticized President Donald Trump and his Administration for not holding regular press briefings.  Yet now that he, his advisors, and public officials, such as Dr. Anthony Fauci, are currently holding daily press briefings to keep the public informed of all developments concerning the pandemic, many in the media say that he should “just stop.”  Witness just a few examples:
    • One recent headline in The Washington Post: “Trump, as usual, is just making things worse.”
    • KUOW Public Radio (Washington State) tweet:  “… we will not be airing the briefings live due to a pattern of false or misleading information provided that cannot be fact-checked in real time.”  In response, some would ask, “Why are we supporting public radio with our tax dollars, so that they can decide not to bring the facts about the pandemic to the American people?” 
    • Rachel Maddow:  “I would stop putting those briefings on live TV, not out of spite, but because it’s misinformation.”
Video Image Screenshot
  • Update: Disturbingly, in an article by Chantal Da Silva posted this morning (3/31/20 at 4:09 AM EDT) by Newsweek, “Over 120,000 Sign Petition Calling for End to Live Coverage of Trump’s Coronavirus Briefings.”

What about the nature of many of the questions posed to President Trump during those daily press briefings?   Despite the above, regardless of one’s political views and perspective concerning President Trump’s demeanor, it’s difficult not to agree that the tone of much of the questioning is disrespectful, opinionated, sensationalized, and crafted with a “gotcha,” blame game mindset and fear-mongering intent, rather than directed at obtaining the facts and keeping the American people informed.  Again, here are just a few examples of such questions from the Washington Press Corps:

  • White House NBC News Correspondent, Peter Alexander: “Is it possible that your impulse to put a positive spin on things may be giving Americans a false sense of hope by misrepresenting the preparedness right now?” (The question was in regard to the study of investigational medical treatments for Covid-19.)   The President’s response: “Such a lovely question … ‘Look, it may work and it may not work … I feel good about it, that’s all it is, just a feeling.’”
  • Alexander was not done, however:  “What do you say to Americans who are scared, though, I guess.  Nearly 200 dead, 14,000 who are sick.  Millions, as you witnessed, who are scared right now.  What do you say to Americans who are watching you right now who are scared?”  What was clear to all who have seen this press briefing, including President Trump (with the exception of the other reporters who piled on to support their colleague), was that Alexander was far more concerned about bringing attention to himself, “scoring a point” for his political agenda, and using scare tactics to grab a headline, rather than taking the time to ask a genuinely important question to obtain critical safety and medical information to help keep the American people further informed.
  • What was the President’s response?  “I say that you’re a terrible reporter, that’s what I say.  I think that’s a very nasty question, and I think it’s a very bad signal that you’re putting out to the American people.  The American people are looking for answers, and they’re looking for hope.  And you’re doing sensationalism …”
  • When an Associated Press (AP) correspondent, Jill Colvin, then jumped to Alexander’s defense, asking “Do you really think, you know, going off on Peter, going off on a network is appropriate when the country is going through something like this?,” the President responded as follows:
  • “Oh, I think it’s a good message because the country has to understand that there is indeed, whether we like it or not, and some of the people in this room won’t like it, there’s a lot of really great news and journalism, and there’s a lot of fake news out there, and I hear it all and see it all, and I understand it all because I’m in the midst of it …  I know that and I call Pete—I call Peter out, but I call other people out, too. This is a time to come together, but coming together is much harder when we have dishonest journalists.  It’s a very important profession that you’re in. It’s a profession that I think is incredible.  I cherish it, but when people are dishonest, they truly do hurt our country.”
  • How about this question from an unnamed “reporter” at another daily press briefing:  “How many deaths are acceptable?”  President Trump’s response:  “How many?!  None.  Okay.  How many deaths are acceptable to me?  None.  Okay, if that’s your question.”
  • Here’s the perspective of Glenn Beck on “Glenn TV” on March 24, 2020 from The Blaze. Entitled “Coronavirus disinformation DEBUNKED: Here’s what they’re not telling you,” he laments the current state of the popular media: “The Trump administration is constantly, constantly getting criticized for not unleashing the American public.  Really?  You’re only feeling that way or your friends are feeling that way because they don’t believe the press anymore.  The media refuses to report on what is actually true, they don’t care: they just want you pissed off, scared, and they want Trump to lose.  That’s it.”  (Glenn Beck, The Blaze).
Video Image Screenshot

Another Telling Example

How many questions did reporters ask about why President Trump insisted on calling the virus the “Wuhan Virus” or the “Chinese Virus”?   He repeatedly explained that he was doing so for logical reasons—i.e., that the outbreak initially began in Wuhan, China and that he was extremely concerned about the Chinese Communist Party’s disinformation campaign, which allowed the virus to spread unchecked across the globe.  By repeatedly pushing this narrative, insisting that his use of the name “Wuhan virus” or “Chinese virus” was pure and simple racism and xenophobia, these “journalists” once again happily threw away their opportunity—and their responsibility—to elicit crucial medical and safety information for the American people.  Instead, they’re breathlessly quoting “public health experts” that due to President Trump’s “long record” of negativity regarding illegal immigration, his referring to the “Wuhan virus” is proof positive that he is racist and xenophobic.  Hmm, does this mean that those who named “Lyme disease,” “West Nile Virus,” and the “Ebola Virus” after the locations where these diseases were first identified are all also racist and xenophobic?  (For the record, I was living in Clinton, CT when Lyme disease was named.   The disease was named in the late 1970s after a small shoreline town in Old Lyme, CT, where the first documented cases were identified.  Old Lyme is just a few towns away from Clinton.  I can tell you that no one in our area took any offense when the disease was named.)

Advice from the Nation’s Foremost Infectious Disease Experts

While more and more in the popular media are ceasing to air the daily press briefings, the President continues to stand on the podium every day, where behind him are the nation’s foremost infectious disease experts, including Dr. Anthony S. Fauci, and Dr. Deborah L. Birx, who is coordinating the nation’s efforts to fight the coronavirus.  President Trump is essentially walking a tightrope, leaning on the evidence that continues to develop and balancing serious concerns about the plunging economy with necessary measures to best help to protect all our American citizens. 

Video Image Screenshot of Daily Press Briefing

In attempting to strike the appropriate balance—weighing cautious optimism against worst-case scenarios—he had said over the last few weeks that he would like to reverse the drastic measures associated with social distancing, potentially by Easter, this April 12th–perhaps rolling out easing of restrictions based on the evidence indicating those at least risk, while continuing restrictions for those at highest risk.  This was met by a firestorm of outrage in the popular media, as shown by the following headlines:

  • “In Weighing Safety Against the Economy, Trump Offers a False Choice, Experts say,”  The Boston Globe, By Laura Krantz and Victoria McGrane, Globe Staff, Updated March 24, 2020, 7:56 pm.
  • “President Trump is Already Considering Defying Health Experts to Boost the Economy,” Time, by Brian Bennett and Tessa Berenson, March 23, 2020.
  • “’My Mother is Not Expendable,’  As Trump itches to get U.S. back to work, experts warn of deaths, economic calamity,” NBC News, by Allan Smith and Shannon Pettypiece, March 24, 2020, 3:27 PM EDT; updated March 24, 2020, 5:47 PM EDT.

Yet last night (Sunday, March 29th, 2020), based on recommendations by Dr. Anthony Fauci, Dr. Deborah Birx, and other advisors, President Trump agreed that the guidelines should not be relaxed too soon.  Earlier yesterday, Dr. Fauci had estimated that based on current data, there could be up to 200,000 fatalities due to the Covid-19 virus in the United States.  Dr. Fauci said, “The idea that we may have these many cases played a role in our decision in trying to make sure that we don’t do something prematurely and pull back when we should be pushing.”  He stressed that extending the guidelines until the end of April was a “wise and prudent decision” that President Trump had reached after several days of discussions with Drs. Fauci and Birx.

Different Standards?

While many in the popular media continue to parrot that “Trump’s lies continue to endanger the public,” in contrast, many have no qualms about reporting on “truths” as presented by current and former Democratic officials.  For example, Joe Biden stated that the Trump Administration cut the Centers for Disease Control (CDC)’s budget (which Mike Bloomberg also repeated in a campaign ad) that was then picked up by other popular media outlets and repeated over and over again.  Per The Hill, AP fact-checkers said former Vice President Joe Biden and former New York Mayor Mike Bloomberg painted a “distorted picture of federal infectious-disease bureaucracy as rudderless and ill-prepared for a coronavirus threat,” saying that the two presidential candidates were “both wrong” to say President Trump cut funding to the CDC.  Though Trump’s 2021 budget proposal does propose a budget cut to the CDC, the budget has not been enacted and was overruled by Congress—which actually increased the CDC’s budget.  Further, the proposed cuts by the Trump Administration would trim funding from the CDC’s chronic disease activities, where Health and Human Services (HHS)’s officials prefer the CDC to focus more closely on its primary missions to prevent and control infectious disease spread and other crucial, emerging public health concerns, including opioid abuse.

Video Image Screenshot

Further, in the midst of this global pandemic, Red State published an article about the “paper of record,” The New York Times, entitled The New York Times Tries to Spread Panic About Ventilators, Gets Epically Fact-Checked.”  Posted at 10:00 pm on March 26, 2020 by Bonchie , the article notes “Today, the paper of record went back to the old steadfast during this crisis, which is to try to create panic in order to score political points … [The story] willfully lies to readers about the timeline in which those ventilators will be needed.”  The story was tweeted by Trip Gabriel, who describes himself as “Codeword level access: Covering 2020 for The New York Times.  Ex-National correspondent, 2012 and 2016 campaign beats, former Styles editor.”  Per the Red State article,  “Luckily, a former Times writer chimed in and absolutely eviscerated Gabriel with a fact-check.” 

Coming Together?

Nearly all of us remember exactly where we were and what we were doing on 9/11/2001 when we saw or heard about the first and then the second plane hitting the Twin Towers in New York City.  And how did we react as Americans?   We came together and put our differences aside, intuitively understanding what is truly important in life.  Unfortunately, over the last several years, I’m sure that many of you would agree that our nation has become so divided that an increasing number of people have lost sight of what makes our lives matter.  Yet with our world changing so rapidly during the last several weeks, many of us are again being reminded of the gifts that truly matter most: our loved ones, health, and safety; our beloved pets; our livelihoods and lifestyles; and our faiths, in God, our neighbors and communities, all those who are working at personal risk to help keep us healthy and safe, or all of the above.

My hope is that their message will be taken seriously by all, enabling us to unite around the facts of our current situation and to stop seeing everything—including the most important considerations in life—through the lens of political ideology and agendas.

Writing in an opinion / commentary piece in The Wall Street Journal, Drs. Eran Bendavid and Jay Ghattacharya posed a crucial question, “Is the Coronavirus as Deadly as They Say?  Current estimates about the Covid-19 fatality rate may be too high by orders of magnitude.”   Their piece further emphasizes just how critical it is for our officials and the popular media to base decisions, communication, and reporting on the facts and evidence to obtain credibility with and accountability for the public.  My hope is that their message will be taken seriously by all, enabling us to unite around the facts of our current situation and to stop seeing everything—including the most important considerations in life—through the lens of political ideology and agendas. 

The authors begin by stating that the very premise that has caused so much fear and misinformation is inaccurate.  They note that that premise is based on its high estimated case fatality rate—“2% to 4% of people with confirmed Covid-19 have died, according to the World Health Organization (WHO) and others.  So if 100 million Americans ultimately get the disease, two million to four million could die.  We believe that estimate is deeply flawed.  The true fatality is the portion of those infected who die, not the deaths from identified positive cases.”

They explain that use of  identified positive cases is extremely misleading due to selection bias concerning those who are tested (since in the US, currently, those whom are most likely to be tested are symptomatic).  They note that “The degree of bias is uncertain because available data are limited.  But it could make the difference between an epidemic that kills 20,000 and one that kills two million.  If the number of actual infections is much larger than the number of [identified] cases—orders of magnitude larger—then the true fatality rate is much lower as well.  That’s not only plausible but likely, based on what we know so far.”

They emphasize several factors that are crucial to consider: the fact that the testing used to identify cases does not currently identify those who were infected previously and have now recovered.  Further, testing rates were initially very low and typically conducted for symptomatic cases with severe illness. They stress that “…given the enormous consequences of decisions around Covid-19 response, getting clear data to guide decisions is now critical.  We don’t know the true infection rate in the US.  Antibody testing of representative samples to measure disease prevalence (including the recovered) is crucial.  Nearly every day, a new lab gets approval for antibody testing, so population testing using this technology is now feasible.”  They conclude that based on the current evidence, “A univeral quarantine may not be worth the costs it imposes on the economy, community, and individual mental and physical health.  We should undertake immediate steps to evaluate the empirical basis of the current lockdowns.”

Are Our Current Efforts Worse than the Virus?

So how do we take all necessary steps to get through this pandemic, while preventing panic and protecting and effectively treating as many people as possible and turning our economy around?  Another  important evidence-based perspective has been provided by Dr. David L. Katz, president of the True Health Initiative and the founding director of the Yale-Griffin Prevention Research Center.  Writing an opinion piece in The New York Times, entitled “Is Our Fight Against Coronavirus Worse Than the Disease?  There may be more targeted ways to beat the pandemic,” he notes that “We routinely differentiate between two kinds of military action: the inevitable carnage and collateral damage of diffuse hostilities, and the precision of a ‘surgical strike,’ methodically targeted to the sources of our particular peril.  The latter, when executed well, minimizes resources and unintended consequences alike.”  He stressed that with today’s coronavirus pandemic, “the same dichotomy applies. This can be open war, with all the fallout that portends, or it could be something more surgical.  The United States and much of the world so far have gone in for the former.  I write now with a sense of urgency to make sure we consider the surgical approach, while there is still time.”

Dr. Katz explains that a pandemic occurs when an entire population is not immune to a specific infectious pathogen.  People develop immunity when they develop antibodies to target the pathogen, whether naturally or due to receiving a vaccine.   If exposed to the pathogen again, their immune system eradicates the pathogen before infectious, symptomatic disease develops.  He then explains “that robust immune response also prevents transmission.”   If the pathogen isn’t able to affect you, you are not able to transmit the pathogen to another person even if he or she is not yet immune to that pathogen.  Therefore, he writes, “When enough of us represent such ‘dead ends’ for viral transmission, spread through the population is blunted, and eventually terminated.  This is called herd immunity.”

From the data that is currently available from the United States and other countries, Dr. Katz notes that deaths from Covid-19 have primarily clustered among “the elderly, those with significant chronic illnesses such as diabetes and heart disease, and those in both groups.”  Unlike with influenza, “The clustering of complications and death from Covid-19 among the elderly and chronically ill, but not children … suggests that we could achieve the crucial goals of social distancing—saving lives and not overwhelming our medical system—by preferentially protecting the medically frail and those over age 60, and in particular those over 70 and 80, from exposure.”

Why Does This Matter?

Dr. Katz then poses a crucial question:  “Why does this matter?  I am deeply concerned that the social, economic, and public health consequences of this near total meltdown of normal life—schools and businesses closed, gatherings banned—will be long lasting and calamitous, possibly graver than the direct toll of the virus itself.  The stock market will bounce back in time, but many businesses never will.  The unemployment, impoverishment, and despair likely to result will be public health scourges of the first order.  Worse, I fear our efforts will do little to contain the virus, because we have a resource-constrained, fragmented, perennially underfunded public health system.  Distributing such limited resources so widely, so shallowly, and so haphazardly is a formula for failure. How certain are you of the best ways to protect your most vulnerable loved ones? How readily can you get tested?”

He noted that in more places across the country, gatherings are being limited to smaller numbers.  (During a recent daily press conference, President Trump encouraged that gatherings should be limited to no more than 10 people.)  Dr, Katz describes such policies as “horizontal interdiction,” where policies are directed at the entire population without assessment of their specific risk for severe infection.  Yet he is extremely concerned that as schools and colleges are closing, and as more and more employees are being laid off, young people of unknown infectious status (who may well be infected but asymptomatic) are now being forced to self-quarantine at home (i.e., what he has termed “vertical interdiction”) with parents and other relatives in their 50s and 60s and grandparents in their 70s, 80s, or even 90s who are at highest risk for severe infection.  This “horizontal and vertical interdiction” is causing enormous strain on our medical system including by those who are considered low risk, severely limiting the system’s ability to direct such resources to those who truly need them.  Our healthcare providers, who are also at increased risk for being infected with the virus, are overwhelmed and worried about lack of respirators, ventilators, hospital beds, masks, and other crucial personal protective equipment (PPE), while simultaneously worrying about fulfilling family demands.  And again, due to the closure of schools, colleges, and many businesses, multiple generations are often sheltering in place together, leading to potentially increased exposure to infection among those at highest risk for severe infection.

So because we do not yet have widespread testing, rather than using a strategic, “surgical strike” approach that specifically focuses on protecting those populations who are known to be at the highest risk, he fears that using such a diffuse approach may well be ineffectively fighting—or even potentially spreading—disease, with the collateral damage of unintended consequences, including minimizing the resources we have, causing our economy to collapse all around us and, ultimately, full societal disruption.

Dr. Katz poses another crucial question: “What is the alternative?”  His response: “… We could focus our resources on testing and protecting, in every way possible, all those people the data indicate are especially vulnerable to severe infection: the elderly, people with chronic diseases, and the immunologically compromised. Those [who] test positive could be the first to receive the first approved antivirals.  The majority, testing negative, could benefit from every resource we have to shield them from exposure …”

He continued, saying that “If we were to focus on the especially vulnerable, there would be resources to keep them at home, provide them with needed services and coronavirus testing, and direct our medical system to their early care.  I would favor proactive rather than reactive testing in this group and early use of the most promising anti-viral drugs.  This cannot be done under current policies, as we spread our relatively few test kits across the expanse of a whole population, made all the more anxious because society has shut down.”

Dr. Katz argues that by strategically focusing on a much smaller segment of the population based on evidence of whom is at most risk, this “would allow most of society to return to life as usual and perhaps prevent vast segments of the economy from collapsing.   Healthy children could return to school and healthy adults go back to their jobs.  Theaters and restaurants could reopen, though we might be wise to avoid very large social gatherings like stadium sporting events and concerts.   So long as we were protecting the truly vulnerable, a sense of calm could be restored to society.  Just as important, society as a whole could develop natural herd immunity to the virus.  The vast majority of people would develop mild coronavirus infections, while medical resources could focus on those who fell critically ill.  Once the wider population had been exposed and, if infected, had recovered and gained natural immunity, the risk to the most vulnerable would fall dramatically.”

He concludes that “a pivot right now from trying to protect all people to focusing on the most vulnerable remains entirely plausible.  With each passing day, however, it becomes more difficult.  The path we are on may well lead to uncontained viral contagion and monumental collateral damage to our society and economy.  A more surgical approach is what we need.”

All of this leads to these final questions:  What is our country going to look like after the pandemic ends?  Will we as a society learn the crucial lessons this time?  Will we finally become proactive rather than reactive?  Will our public officials continue to use a diffuse approach, or will they use a methodical surgical strike at the source of the next pandemic?  What will our economy look like?  How many people will remain unemployed, and how many small businesses may never return?  Will our popular media stop moving in lock-step and begin to report objective truths and evidence?  Will we finally be ready to together look through the lens of reality versus personal opinion and bias?   I pray that in the words of William Shakespeare,  “All’s Well that Ends Well.”  But we shall see.

A Husband’s Thoughts on Cancer

Those of you who have read my blog know that my first cousin, Laura, was diagnosed with HER2+ breast cancer in 2012—and that just a year and a half later, she felt a lump in her neck, which led to the devastating news that she had metastatic recurrence to her lungs, liver, and multiple lymph nodes.  She immediately began treatment again, this time for metastatic breast cancer (MBC).

Fortunately, she responded incredibly well to her combined targeted HER2 treatment with Herceptin and a newly approved HER2 targeted agent, Perjeta, and was found to have no evidence of disease (“NED”) since October 2014.  But as she explained in her blog, in the spring of 2015: “I started feeling a tiny bit off when doing flip turns at the pool.  That’s all.  And my eyes felt bleary from what I assumed was my two day per week job in front of a computer where, with my reading glasses on, I had to be very close to the screen.  In my former life, I would have chalked it up to [being] tired or hungry.  In my occupation as cancer patient, I knew to request a brain MRI.”  And it was then that she learned her cancer had metastasized to her brain, with 18 lesions that were too poorly differentiated for localized gamma knife.   She therefore underwent whole brain radiation and, later, following the development of more brain lesions, gamma knife procedures.   In March of this year, Laura wrote the following about her most recent scans:  “’My body has no visible cancer right now.  Yea!  My brain has five tiny lesions that aren’t a big enough deal right now to treat.  Yea…..? This is a ‘great report’ from both of my brilliant docs.  Grace is my interior screaming, ‘What Kind of Fuckery is This?*’ while trying to be content with walking around with five cancerous lesions, however small and asymptomatic.”  (*As Laura explained, “It’s what Amy Winehouse sang so gorgeously in ‘Me and Mr. Jones.’  ‘WHAT KIND OF FUCKERY IS THIS?’  I love curses I’ve never heard before, especially when they fit a situation so well.”)

Also in March, Laura’s husband, Jon, wrote a deeply moving post on his Facebook page that brought me to tears.  In the days that followed, my thoughts kept returning to his words, and it struck me that far too many people have never heard such thoughts from the loved ones of women or men living with MBC.  I therefore contacted Jon to ask whether he would be willing for me to share his post on my blog, explaining that I had two reasons for my request.  First, there was no doubt that his words would deeply resonate with so many.  And second—and so importantly—his post could go far in educating others who have far too many misconceptions about MBC.  Jon graciously gave me his permission, and so, without further ado, I’m honored to share the following with you today.

Jon and Laura

Jon Graves and Laura Snyder

“My Thoughts on Cancer” 

“Every now and then, I try to write something about what it’s like with my wife having metastatic breast cancer (MBC).  Laura has been living with metastatic cancer for just over 33 months, which happens to be the median life expectancy for someone with MBC.  This statistic could be a little skewed, since there are a couple of new [targeted] drugs (Herceptin and Perjeta) that have become available over the past two to four years that should increase life expectancy for those with HER2 positive breast cancer.  She is [also] on chemotherapy and will continue on chemo of one type or another for the rest of her life.

“Right now, Laura has five brain mets (tumors) she is just walking around with.  They are very small, so her radiation oncologist just wants to wait before doing a procedure.  But this is me telling facts and not feelings.

“Ever looming is death.  Metastatic cancer is the cancer that kills.  So death is the first thing that is always lurking.  Every three months, she has scans, and we see if there is cancer in the body or in the brain.  Her cancer likes to invade her brain.

“But beside the big thing (death) is the human trait of planning ahead.  Thinking of the future.  Our future is lived in three month scan cycles.  But at the same time, I think about what is happening in ten years when I’m in my early 60s.

“My birthday is next week.  I will turn 53.  My Dad died when he was 52.  I have been afraid of 52 for a long time.  Laura made it past 52, and it looks like I will,  too.  But it brings up lots of emotions–especially the long-lasting void left for my wife and kids, who never met my real Dad.

“What is it like living with metastatic cancer (from a caregiver/observer view)?  Day to day can be good, generally is good.  Dog walks and amazing dinners.  Laura is cooking more than ever before in our marriage, and the food is amazing.  But there is a knot in my stomach, a catch in my throat, when someone talks of retirement or the future.  I wonder if I should be paying attention when people talk about swiping left or right on Tinder or Teaser (?) or whatever the dating app of choice is.  Will I be looking for someone to retire with in 15 years, or will Laura be there by my side?  Like everything in life, I just don’t know, but my mind wanders to the uncertain future late at night or early in the morning.

“I also feel guilty about wondering about my future when Laura is doing well while having cancer in her brain.  There are interesting and potentially life-saving drugs out there in trials that could make all the difference in the near future.

“Am I a bad person for making jokes that she can’t remember something?  She does not have nearly the cognitive abilities that she had five years ago.  Brain radiation will do that, as well as years of chemotherapy.  Her eyesight changes every few months, and she needs new glasses lenses, but I taunt her for not being able to see …  I know, I suck and should be better, but I can’t help making jokes about what is hard.

“We are thinking and dreaming of building out on our Knappa land above Big Creek.  It is great to think about moving out there when I retire, but what does that really mean–am I with Lu or alone?

“If you have read this far, please do not worry about me.  I am the same ebullient, happy-go-lucky fellow you know.  At times, I think too much, just like my lovely wife.”

Thank you, Laura and Jon, for allowing me to share this post.  I recalled that in an interview for the blog “Voices of Metastatic Breast Cancer,” when Laura was asked to share her favorite poem or song, she responded by saying that The Beatles ‘Ob-la-di, Ob-la-da’ really resonated with her in this phase of her life, as did Lucille Clifton’s poem, ‘Blessing the Boats.’”  I’m therefore sharing the below as a way of expressing my gratitude to you both.

blessing the boats

BY LUCILLE CLIFTON

                                    (at St. Mary’s)

may the tide

that is entering even now

the lip of our understanding

carry you out

beyond the face of fear

may you kiss

the wind then turn from it

certain that it will

love your back     may you

open your eyes to water

water waving forever

and may you in your innocence

sail through this to that

Lucille Clifton, “blessing the boats” from Blessing the Boats: New and Selected Poems 1988-2000. Copyright © 2000 by Lucille Clifton. Reprinted by permission of BOA Editions, Ltd., http://www.boaeditions.org.

Source: Blessing the Boats: New and Selected Poems 1988-2000 (BOA Editions Ltd., 2000)

Ob-La-Di, Ob-La-Da

 

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.)

 

Ode to Jody

 

Jody1

This Wednesday, May 18th, so many of us experienced a tremendous loss.  Our beautiful friend, Jody Schoger, gained her wings.  There is so much to say about Jody, about her warmth, compassion, wisdom, eloquence, determination, and strength.  She was a tremendously talented writer and patient advocate who blazed a unique trail through social media, co-founding “Breast Cancer Social Media.”  Also known as #BCSM, it quickly became a global online community, providing powerful support, connecting thousands of people from around the world affected by breast cancer, and sharing critical information that was always grounded in and supported by medical evidence.

Jody was fiercely committed to #BCSM and those who formed this tremendously important community.  In fact, shortly after she learned that she had metastatic breast cancer, she wrote to me:

“This was a huge shock, but we are absorbing it, and I need to do some rearranging of activities, so I can treat this and still advocate.  It is as important as ever.”

And as her #BCSM co-founder, Alicia Staley, shared in a beautiful tribute to Jody, “When it came time to leave, she insisted on walking me to the door and down the driveway.  I knew this would be a long walk for her, but stubborn as she was, there was no stopping her.  She walked with me, one arm around mine, another hand on her cane … She squeezed my arm and pulled me in close. ‘Now listen, you know what needs to be done for #BCSM.  It’s up to you to take care of them now.’”  This powerfully shows so much about Jody: her resolve and inner strength, her poignant honesty, her innate ability to gently guide and teach us the most important life lessons–and the simple, but profound fact that she was always an advocate for others in her heart, throughout her soul, and with every breath.

Yet as I have tried to write this tribute today,  I’ve found that it is nearly impossible to adequately describe Jody with any words I might share.   Rather, it is her own words–such as her blog’s tag line, “Working for a better world, one word at a time”–through which we can remember the beauty, joy, knowledge, and compassion she brought to so many.  The following is from Jody’s blog, “Women with Cancer,” a place where I’ll be returning often, to again spend time with her in one of the few ways I still can:

Tuesday, March 24, 2015: “Stable Disease”:  “It’s one of those days.  I can’t stop smiling.  Spring has arrived after a long, grey winter here in south Texas.  It was dank, it was long, it was wet and cold … On my part, I’ve learned a lot about the seasons of metastatic disease in these past four short months … I’ll always have cancer, yet I have a team at MD Anderson that will go the distance with me.  Friends have stepped forward and clearly demonstrated their love, compassion, and courage.  Yes, some things could be better as far as my health news.  But being here and writing and chatting with you today is simply marvelous.  It just is.”

Jody2

Friday, April 26, 2013: “Cancer: Round Two”: “It has been difficult, and still is, to relate to this new information.  Yet my life is different.  How I prioritize will be different.  One thing is steadfast: my commitment to #BCSM and advocacy.  This is as strong if not stronger than ever. So is my knowledge that I am not alone in living with metastatic breast cancer.  When there are times of complete stillness, I know all of you will be with me.  That is how I feel about you.  And that we are all in this together, in this moment and those to come.”

Jody and Katie

On the same day that Jody posted the blog excerpted from above, she sent an email to several of us that began in her always honest, open, and eloquent manner: “I wanted you to hear this difficult news from me first instead of Twitter where the link below will be published sometime today.   When I went to MD Anderson two weeks ago for my annual survivorship clinic, metastatic breast cancer was discovered in lymph nodes in my neck and axilla.  I was so shocked, the only thing I could say to the radiologist who’d performed the FNA was, ‘really? are you kidding me?’ Of course she wasn’t kidding … We are adjusting.  I am adjusting, reorganizing, and sticking close to home.  Thank you for your friendship and the concern I know that will come my way.  You all help make my world go round.”

Jody, you have helped make the world go round for so many, and your words on your blog and #BCSM will continue to be a source of comfort for us.  We are heartbroken, but as you showed us, we are adjusting.  And we know that we must still advocate, now more than even before: as a wonderful and wise woman once said, “It is as important as ever.”

Rest in peace, dear Jody.

wings

 

Immunotherapy Part II: Understanding the Unique Spectrum of Adverse Events

In last week’s blog, entitled “Cancer Immunotherapy: a Patient’s Perspective,” I discussed the increasing excitement concerning new immunotherapies for patients with advanced and difficult-to-treat cancers, the need for caution in interpreting results while the data is still young, and the necessity for more mature data with much longer follow-up on an increased number of patients.
Part II of this blog series, now posted on The American Journal of Managed Care’s Contributors Page, continues on this important topic, focusing on why it is so critical for patients and their caregivers to understand the unique spectrum of adverse events that may be associated with these agents.  Unfortunately–and unsurprisingly–when reporting on the potential benefits of immunotherapy, some in the popular media have stated that there are “few to no side effects” associated with such therapies.  Though immunotherapies are typically not associated with the same adverse effects seen with chemotherapy regimens, “The Promise of Cancer Immunotherapy: Why Patient Education is Critical, Part II” outlines why the statement “few to no side effects” does not tell the entire story and may be extremely misleading for patients–and emphasizes the information that must be shared with patients before beginning any immunotherapy treatment.
tcells

 

Cancer Immunotherapy: a Patient Advocate’s Perspective

Over the last few years, months, and weeks, we have seen an increasing number of headlines pronouncing immunotherapy as the most exciting development in cancer treatment in recent memory.  Yet what is striking to many is that these discussions are not solely taking place throughout the popular media.  Rather, immunotherapy is more and more frequently becoming a major topic among oncologists, investigators, government agencies, academia, patient advocates, industry, and other stakeholders–where some express genuine excitement and others weigh in with cautious optimism concerning its potential promise.

immune_system

Yet despite the optimism, the field is still very much in its infancy, and the evidence is still emerging.  As a cancer research advocate, a key part of my role is focusing on the state of the evidence and the implications for patients, ensuring that scientific information is presented clearly and realistically, and raising the need for caution in increasing the hopes of patients when such data is still “in early days.”  In other words, because the encouraging results for some patients with previously resistant disease have been widely heralded in the popular media and since immunotherapy is in fact an increasingly active area of research, it is critical that cancer patients and their loved ones truly know what to expect from immunotherapy.

So when I was recently asked to contribute a new article for the American Journal of Managed Care and Evidence-Based Oncology  from the perspective of a patient and cancer research advocate, it was immediately clear that the following would be my next topic: “The Promise of Cancer Immunotherapy: Why Patient Education is Critical.”  So please click here to read this most recent contribution, and consider sharing it with other patients, advocates, caregivers, and healthcare providers concerning the current realities of cancer immunotherapy, the remaining questions, and why long-term follow-up and continued research is so critical with a much larger number of patients to obtain the mature data needed regarding safety, efficacy, potential adverse effects, durability of beneficial response, and impact on patients’ overall survival.

 

 

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.