If you’re a dog lover, you know first-hand just how much joy our canine friends can bring into our lives. They’re always the ones who are happiest to see us when we return home–whether we’ve been gone for months, days, or even just 15 minutes. They sense our emotions, follow us around the house, and have never-ending curiosity and a love for play. Each has his or her own special personality, and they make us laugh more than most human beings can.
If you’ve been diagnosed with cancer, you also know anecdotally that spending time with your cuddly four-legged canine companion provides important health-related benefits. Further, research continues to confirm that these health benefits are real. The following shows the many different ways that our beloved dogs prove time and time again that they’re a cancer survivor’s best friend:
Receiving a cancer diagnosis and undergoing treatment can cause a seemingly unlimited amount of stress. Fortunately, our canine friends always seem to have just what it takes to improve our moods and lessen or even relieve our stress. Simply petting your dog can release endorphins that can make you feel calmer and temporarily distract you from any feeling of illness or pain that you’re experiencing.
We know that many patients with cancer may feel isolated and become depressed. This writer knows firsthand that learning you have cancer can cause a striking sense of loneliness no matter how supportive your family members and others are around you. But spending time with your pup can significantly lower feelings of loneliness. Further, research has shown that cancer patients who are able to spend time with a therapy dog before their chemotherapy treatment reported improved social and emotional well-being despite being in physical decline during their treatments.
In fact, many cancer patients find that their dogs provide a special type of companionship that they may not receive from even their closest family member or friend. So many of us are afraid of burdening or worrying our loved ones or even driving them away if we’re completely open about our fears and darkest thoughts. Yet you don’t have to worry about that with your pup. You know that you can say anything to your dog, and he or she will always be happy to listen and comfort you. I wept on my dog’s shoulders more than once when going through treatment. And she gently licked my tears away more times than I can say.
Research has shown that being a dog owner can also improve your overall physical well-being, which in turn can enhance your recovery from cancer and its treatment. Both the cancer itself and its treatments can result in debilitating fatigue. But research shows that people with cancer who engage in exercise regularly experience 40% to 50% less fatigue when compared with other cancer patients. Regularly walking your dog multiple times every day should provide just the right amount of moderate exercise to help aid in your recovery.
If your cancer treatment is causing mobility difficulties, a specially trained service dog can help you maintain your independence and provide invaluable help during your recovery. Your service dog can be trained to open and close doors for you, assist you while walking, bring your phone to you, and bark if there is an emergency.
Have you been diagnosed with cancer and found that your canine companion provided you with special comfort during your journey? If so, please share your story here by leaving a comment.
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.
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.
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.”
She was the perfect dog. She was absolutely adorable in everything she did. Her only “fault,” which is a normal part of being a puppy of course, was her tendency to pee on the floor whenever she was excited to see someone. In other words, every time I visited home from college, I was greeted by an adorable little tail wagging at hummingbird speed, followed by a slowly spreading yellow puddle on the kitchen floor. I was not the only one who was completely in love. I used to tease my father that Sophie was his favorite daughter, because he used to carry her around the house in his arms–something that when we were children, he rarely did with me and my sister, because, let’s face it, we were cranky, fussy babies. 🙂
In Trouble: My adult life choices had to be put on hold
When I graduated from college, I moved back home with my parents and Sophie. (My sister was still in college at the time.) For the past year and a half during my junior and senior years, I had been experiencing troubling symptoms and desperately trying to find the cause. I was constantly coughing, so much so that it was often difficult to stop; lost a tremendous amount of weight; was uncomfortable in my own skin, feeling itchy all over; was constantly exhausted; and was experiencing severe night sweats–all of which I later learned were “classic” symptoms suggesting Hodgkin’s lymphoma.
I was hired as a feature writer for a local newspaper, but felt that I had to obtain answers before even considering moving out and being on my own. About six months after I’d moved back home, I was getting ready for work, had just finished taking a shower, and proceeded to have the worst coughing attack I’d ever had. I literally could not catch my breath. My father started knocking on the bathroom door, saying “Please come out here right now!” After I finally managed to stop coughing and had gotten dressed, I stepped into the hallway, and my father said, “That’s it! There is no way that you’re going to work today. Something is desperately wrong here, and we are going to a doctor right NOW to insist that you get a chest x-ray. I can’t believe that not one of the doctors you’ve seen has ordered a simple chest x-ray!” Everyone in my house was understandably upset and frantic, including poor Sophie, who didn’t appear to comprehend what was going on and seemed unnerved as well. I later learned directly from Sophie herself that I was probably wrong about the former: she ultimately seemed to have a very deep understanding that I was extremely ill.
Fast forward a few hours later, and I was sitting in the doctor’s office, looking at an x-ray of my lungs on the light box (this was back in the 80s, so I know that I’m seriously dating myself ). And I immediately knew that something was terribly wrong. One of my lungs appeared in black (which is normal), but the other lung appeared nearly covered in white (definitely not normal). The immediate fear was that this may be cancer, but that wouldn’t be certain until I had a biopsy.
The next several days were a complete blur. I believe that it was the very next day when I met with a thoracic surgeon, and I was scheduled for a surgical biopsy at the Hospital of St. Raphael in New Haven, CT. I underwent my biopsy and waited for my results in a single hospital room in the cardiovascular wing. All of my fellow patients were awaiting or recovering from cardiothoracic surgery and were decades older than I was. When I was encouraged to get out of bed and start walking around the unit with my IV pole, most of the other patients became used to my passing their rooms again and again, and many of them started up conversations with me. We quickly became caring friends, serving as a support group for one another. One patient was scheduled for coronary bypass surgery a few days before I was discharged. I remember repeatedly walking by his room, becoming more and more anxious, praying that his surgery was going well. Finally, he was brought back to his room, and while I stood by his bedside, though he was extremely groggy, I remember how relieved I was when he opened his eyes and smiled, happy to see me.
I missed my parents terribly despite the fact that they visited as much as they could. But I was extremely upset that I couldn’t see Sophie. I knew that seeing her face would immediately help me to begin my healing process.
Fortunately, the nurses at St. Raphael’s were absolutely wonderful, and most of them were just a few years older than I. For the several days that I remained in the hospital, many of them began not just to provide their nursing care, but to visit and keep me company. My care at the hospital could not have been better, and once I returned home, I wrote a letter to the nurses, thanking them for everything they did for me during such a scary time for me and my family.
As I was being cared for so well at the hospital and forming friendships with my fellow patients, I later learned that my parents were terrified, waiting for the results of my biopsy and praying that my diagnosis was not lung cancer. When the news finally came, my parents both breathed sighs of relief. I know that it sounds strange to consider any cancer diagnosis a “good” one, but my prognosis would have been much more grave should it have been lung cancer. My new oncologist immediately explained to us that “Hodgkin’s lymphoma is one of the more favorable diagnoses, because it is much more treatable than other cancers.” I was grateful for that, but also learned the troubling news that I had late-stage IIIB Hodgkin’s lymphoma with extremely bulky disease. Hodgkin’s lymphoma that is characterized by “bulky disease” means that the tumors in the chest are at least ⅓ as wide as the chest or that tumors in other areas of the body are at least 4 inches.
I also had characteristic “B symptoms,” including drenching night sweats, severe exhaustion, loss of more than 10% of my body weight over the last six months (without dieting), and fever of at least 100.4°F. In addition, I had less common symptoms known to be associated with Hodgkin’s, including severe itchiness of the skin without a rash and deep, ongoing coughing. (Researchers suggest that persistent itching seen with Hodgkin’s is caused by cytokines, which are chemicals released by the immune system in response to lymphoma, resulting in irritation to nerve endings in the skin.) Further, during my biopsy, the surgeon discovered that one of my lungs had collapsed due to the tumors.
However, I did not have what is considered the “hallmark symptom” of Hodgkin’s, which is painless swelling in the lymph nodes in the neck, underarms, or groin. I was told that that was the primary reason why there was such a delay in my diagnosis. (One would think that the classic B symptoms that I had experienced for well over a year would have thrown up a red flag, immediately suggesting Hodgkin’s lymphoma, but that is a blog for another day.)
So having bulky disease with B symptoms meant that my lymphoma was very advanced, and my oncologist recommended intensive treatment, which was extremely difficult for patients but considered crucial at that time.
The year was 1987, and the standard protocol for late-stage Hodgkin’s disease was high-dose radiation and chemotherapy, including Adriamycin (doxorubicin), a drug that is now known to potentially cause cardiac effects. Technically, I was treated with two different combinations of chemotherapy, one called MOPP and the second known as ABVD. I would receive MOPP first (i.e., mechlorethamine, vincristine, procarbazine, and prednisone), have two weeks to recover, and then if my blood counts were not too low, I’d receive ABVD (doxorubicin, bleomycin, vinblastine, and dacarbazine). After two weeks, the next cycle would begin. I was originally scheduled to undergo six cycles. Once I was finally done with chemotherapy, I would next undergo mantle-field radiation therapy (again, standard treatment for patients with massive mediastinal lymphoma).
The primary goal at that time had to be enabling patients to go into remission, since if those with Hodgkin’s disease recurred, they had much fewer options for successful treatment and a much higher risk of mortality. Yet in the decades since, though many of us treated with these aggressive therapy protocols were fortunate enough to go into remission, we have also gone on to develop serious late effects, such as cardiotoxicity and a second cancer due to their cancer treatment years or decades earlier.
But where does Sophie come into all of this?
Sophie to the Rescue
I’ll never forget my first chemotherapy session with MOPP. When I walked into my oncologist’s office, I saw that there was a small bathroom on the right. It had a very distinctive smell of disinfectant (after my first few chemotherapy treatments, I’d walk by that bathroom and instantly feel completely nauseated, triggered by that smell). One of the oncology nurses brought me into a tiny room to take a blood draw. Once they determined that my blood levels were appropriate for treatment, the nurse led me to one of their infusion rooms. The MOPP regimen was considered “easier” than the ABVD regimen, since the latter included what many cancer patients refer to as the “red devil,” Adriamycin. The drug is bright red, delivered intravenously, and so caustic that it causes serious burns if it touches the skin.
After my MOPP infusion was completed, I had to go for a scan that my oncologist had scheduled. I had to stay completely still, so that there were no artifacts on the images. I soon began to feel horribly nauseated, and as the clock kept ticking, I was terrified that I was going be sick and have to start the scan all over again. Thank goodness that I finally got through the scan without that happening. I then had to wait another 30 minutes or so for one more scan, so my mother wheeled me to the hospital cafeteria. I had taken an oral Compazine (an antinausea drug) about receiving my chemotherapy infusion. But it ultimately did absolutely nothing to reduce my nausea: it only resulted in my exhaustion. We sat at a table in the middle of the cafeteria, surrounded by physicians. Literally seconds after we had settled, I began to gag, and my mother swiftly positioned the emesis basin she had obtained from one of the oncology nurses, and there you go–the beginning of the terrible journey that one had to take in the 1980s when we did not have the benefits of today’s powerful, effective, antinausea medications.
The drive home from the hospital in New Haven was an awful one. It was rush hour, the traffic on I-95 was worse than usual, and I spent the entire ride home vomiting. When we finally reached home, there she was: Sophie, my baby. I suspect that was the first time I’d smiled since this entire nightmare began. Because she was still a puppy, she was in her crate (which she loved as her own, cozy place), and when my mother opened the door, Sophie immediately bounded out, started licking my face, giving me her sweet puppy kisses over and over again, and jumping up to welcome me back. She closely followed me up the stairs (a skill she had only recently acquired) and waited patiently outside the bathroom as I vomited once again.
She was right behind me as I headed to my bedroom and, as I gingerly climbed into bed, Sophie did something she had never done before. I had a stuffed dog that sat on my headboard, and she jumped up on my bed, took the stuffed animal gently in her mouth, and jumped back onto the floor. She then pulled herself under my bed, lying directly beneath me, and began to gently knead the stuffed dog with her paws, back and forth, back and forth. Periodically, I’d have to pull myself out of bed and race to the bathroom for another round of vomiting. Sophie would always be right behind me, waiting outside the bathroom, and she would then escort me back to bed. Finally, the Compazine would enable me to drift off to sleep.
When I finally woke up in the late afternoon and made my way down the stairs, again with Sophie at my heels, my mother said that she had something absolutely amazing to share with me. She said that she had periodically come upstairs to check on me, and each time, she found Sophie on the bed with me, hovering over me. She had her front paws on either side of me, and she was reaching her head toward mine as closely as she could, almost as if she were checking to ensure I was breathing. She was utterly still and remained in that position for a few minutes until she was reassured that I was okay. When she noticed my mother standing at the door outside my bedroom, she would then jump onto the floor, gently take the stuffed dog in her mouth again, scoot beneath my bed where she had been before, and once again began to knead the stuffed dog with her front paws over and over, continuing to hold vigil over me.
And this became Sophie’s pattern. Every time that I returned home after receiving chemotherapy, she would literally watch over me and do her best to protect me while she guarded me both over and beneath my bed. Those days would be the only times that she would stay with me for hours and hours on and beneath my bed. And she did not once reach for my stuffed animal except on those days.
I never had seen anything like this in my life. I felt so cared for, loved, and protected by this sweet, kind-hearted puppy. I’ve had several Springer Spaniels in my life thus far and continue to love each and every one of them, with all of their very distinct personalities. (Please see all my babies at the end of this blog.) But I had an extremely special, unique, lifelong bond with Sophie, consider her my special puppy angel, and feel that she continues to watch over me from her spot on The Rainbow Bridge:
“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.
Crucial Research Objective: How Many Asymptomatic Adults Have Covid-19 Antibodies?
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
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.”
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.
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?
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.
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?
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?
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.
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 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.
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.
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.
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:
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 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:
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.”
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.”
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.”
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.
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.
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 hereto 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.
I’m not sorry to say good-bye to 2015. It was a cruel year during which we lost several beloved patient advocates, who were wrenched away from their families, their friends, and so many loved ones by the monstrous, hydra-headed beast, cancer. It was the year during which I learned that my first cousin had been diagnosed with brain metastases due to her stage IV HER2+ breast cancer. It was the year when I began to fear going onto Facebook, since I’ve now learned heartbreaking news about dear friends there far too many times. And it was the year when I began to dread receiving any emails whose subject lines simply contained the name of a fellow advocate with cancer—because it almost always meant the same thing, more tragic news, the loss of yet another dear friend and remarkable advocate.
In years not so long ago, when I was asked to explain what it meant to be a cancer research advocate, I welcomed the question. After all, I was being asked about my passion, what in many ways had become my raison d’etre. I could pinpoint with precision the very week when I stepped out of my role as a cancer patient and into that of a research advocate. After much difficult, fascinating, intellectually inspiring work, I was now sitting at the table as a partner with researchers, clinicians, and fellow advocates to drive the critical research questions that truly mattered to cancer patients themselves. I was an engaged, vocal participant at national cancer conferences, sometimes watching history being made as new treatment breakthroughs were being presented—and sharing deep disappointment with the oncologists, scientists, and advocates in the audience when novel agents that were followed with excitement ultimately failed to live up to their promise. And I was meeting highly passionate, intelligent, driven people from all parts of the country and, often, other nations, who were fellow cancer survivors and committed advocates, forming immediate deep friendships. It’s very difficult to describe how meaningful such friendships are. They involve an instant recognition of a kindred soul–one who knows first-hand just what you’ve been through from all aspects, including physically, emotionally, mentally, socially, spiritually, when cancer so rudely knocks at your door. These are folks who truly “get it,” to whom you immediately and without hesitation find yourself opening your heart and confiding the most private thoughts and concerns in a way you never could, nor wished to do so with your loved ones, in your reflex to protect them from your darkest thoughts and fears. Such friendships are life-changing, they are life-long, and they are one of the indescribable gifts that can give even the most difficult lives meaning. And yet. When your lifelong friend’s life ends far too soon—and due to the very reason that brought your life paths together when they otherwise never would have crossed—what then?
It’s now been more than 8 years since I’ve stepped into the role of an advocate. And with each year comes an increasing wave of devastating news. The terrible truth is that this should not have been unexpected for we who are cancer survivors and research advocates. For those of us affected by breast cancer, for example, we know that HER2+ and triple negative/basal-like breast cancer subtypes are associated with early relapse risk. And we know that ER+ tumors are associated with persistent late relapse risk beyond 5 years, with up to one-third of patients recurring potentially decades after active treatment. Yet every single time I learn that one of my advocate sisters or brothers has developed metastatic disease, I’m blindsided. And worse, when I receive the terrible news that a friend with stage IV cancer has passed, I still somehow allow myself to be blindsided yet again. After all, for my friends with metastatic breast cancer, I knew that they did not have curable disease. Each time, we prayed that their treatments would lead to “no evidence of disease” (NED) and that this would last indefinitely–or until additional, much more effective treatments became available. And for some friends with stage IV disease, they have remained with NED for several years. Others have sought new clinical trials after their cancer became resistant to their current treatment and were able to maintain stable disease for quite some time, sometimes for years—and if they became resistant to that agent, some were able to enroll on another clinical trial. And yet. There have been more of those times when, after seeing my friends year after year at the same conferences or grant review sessions, they suddenly were not there. Or they were, yet it was impossible to deny how frail they appeared, how very sick they were, that their cancer had become more adept at resisting treatment. And perhaps the most soul-shattering times were those when, after speaking with a friend who seemed to be doing extraordinarily well with her new treatment, we learned very shortly thereafter that she was no longer with us. Each and every time, I’ve been blindsided by their deaths; I’ve been lost, angry, completely unaccepting of their loss from this world.
When undergoing my active cancer treatment for Hodgkin’s and, later, for breast cancer, I often worried about my oncologists and the oncology nurses who spent so much time with us, who supported us at the scariest times of our lives, who provided comfort and strength not just to we as patients but to our families as well. Both of my oncologists and their oncology nurses essentially became honorary family members, as they did for so many others whom they treated day in and day out, year after year. How were they able to form such powerful, caring relationships, yet learn how to cope with their patients’ deaths, the deaths of far far too many patients? Fortunately, in more recent years, there has been increasing discussion and recognition about the impact of such repeated losses and the need for improved resources and support for oncology professionals. As noted in Cancer Therapy Advisor,“Everyone who enters the field of oncology knows that many of their patients will die, but foreknowledge is not protection against the cumulative effects of loss.” I would argue that the same is true for cancer research patient advocates, particularly for those of us who have been actively engaged for several years and are experiencing what has been described as “cumulative grief”–the compounding emotional, physical, and spiritual responses to repeated exposures to profound loss. Just weeks ago, upon learning of another friend’s death, I shared with a fellow breast cancer survivor that I was still reeling from the terrible news (and the awful news before that, and the devastating news before that)—and her response was direct, simple, and wise: “Deb, this is the hard part.”
That it is—and during this past year, the sheer weight of it was sometimes more than I thought I could bear. Yet it’s during those times that I try to remind myself: in addition to being advocates for cancer research, we’re here to advocate for one another, and the support we provide to our fellow advocates during these devastating times is crucial. Oncologists and oncology nurses have appropriately stressed the need for greater institutional and professional support to help them cope with their grief due to their patients’ deaths. It could be extraordinarily helpful if we, too, as dedicated cancer patient advocates, similarly received such supportive and educational resources through cancer organizations and professional societies on topics such as cumulative grief, end-of-life care, pain management, and palliative care. After all, as we know so well, knowledge is power and often provides the tools and the strength to transform even the most difficult, painful problems and emotions, including grief, into truly positive outcomes.
In addition, every time we experience these terrible losses, it serves as a stark, powerful reminder of why we became advocates in the first place. As cancer patients and advocates, we are the ones who bring a critical sense of urgency to identifying the cancer research questions that truly matter, that will have the most impact, that will ultimately lead to more cures. By working to support one another and to transform our grief into remembrance and renewed commitment to our advocacy efforts, perhaps that is the most appropriate, necessary, and powerful way to honor all of those we have lost.
“Grief starts to become indulgent, and it doesn’t serve anyone, and it’s painful. But if you transform it into remembrance, then you’re magnifying the person you lost and also giving something of that person to other people, so they can experience something of that person.”
It pains me to say that just 5 days after the new year, our cancer patient advocacy community has experienced yet another devastating loss.
Ellen Stovall was the Senior Health Policy Advisor at the National Coalition for Cancer Survivorship (NCCS) and a founding member of the Institute of Medicine (IOM)’s National Cancer Policy Board. As I posted on Ellen’s wall on Facebook, she was a shining light to so many of us, and it is impossible to articulate the profound difference she has made for cancer survivors in this country. She spoke profoundly and powerfully on the need for further knowledge about the very serious late effects that can result from cancer treatment. Though I never had the honor of meeting Ellen face to face, I was and will always be inspired by her remarkable accomplishments in cancer survivorship advocacy. As I’ve written about here in my blog, like Ellen, I was originally diagnosed with Hodgkin’s lymphoma, and I also went on to develop potentially life-threatening late effects of my treatment, including breast cancer and cardiac disease. It is absolutely devastating that Ellen passed away 2 days ago due to sudden cardiac complications secondary to her cancer treatments. Her passion and commitment touched so many lives, and her legacy will continue–a legacy of ensuring that cancer survivors are able to become true partners in their medical care and that shared decision-making with their medical team will help to prevent or mitigate such life-threatening late effects for many cancer patients. My first major focus as an advocate was the need for improved cancer treatments that minimized the development of serious acute and late effects while continuing to ensure optimal efficacy and positive patient outcomes. Going forward, my efforts in this critical area will be in tribute to Ellen, one of the true pioneers of the art and science of cancer survivorship.
Back in 2002, Ellen shared the following thoughts when speaking during a National Cancer Institute (NCI)/American Cancer Society Survivorship Symposium in Washington, DC, called “Cancer Survivorship: Resilience Across the Lifespan.” Fourteen years later, her words resonate just as deeply:
“So, my closing thoughts to you are, as you leave this room today to go back to the very, very important work of writing grants, reviewing grants, and helping people in your communities day to day deal with their personal journeys of survivorship, please know that the cancer advocacy community, represented by scores of organizations that were founded by and for cancer survivors, stands ready and eager to tell you our stories of survivorship with the belief that while grateful for the blessings of survivorship, for the increasing length of days, months, and years added because of new and improved therapies for cancer, that this diagnosis is filled with many punishing and adverse consequences as well as joy for living each day.
“The physician Victor Sidel once said that statistics are people with their tears wiped away. That is the way NCCS views cancer survivors, and on behalf of all of us at NCCS, thank you for your attention and for all you do for cancer survivorship.”
Thank you, Ellen, for all you have done for so many. Rest in peace.