As both a caregiver and a patient, I’ve had lots of on-the-job training. It started with my mother’s colon cancer diagnosis when I was just 32. She only survived 6 weeks, much of it in gut-wrenching pain. I learned I could not help her – but I also learned the crucial importance of advocating for yourself. Just over ten years later, that lesson served me well.
I share my story now because there may be nuggets that may resonate with your own experience and provide comfort, or perhaps raise questions to help get the answers you’ve been seeking. At the very least, I hope it will inspire a little hope. Science is changing every day, and if you take anything from my story, it is the importance of hanging in there. Just making it to tomorrow may open new doors for you.
Before rewinding to what was the beginning for me, I’ll give you a little background just as I provided to any physician that would listen. I was a hard-working, young mom with three kids under the age of 13 and working full time. I literally had exercised vigorously just about every day of my adult life, had only indulged in an occasional glass of wine with a nice dinner, had never smoked, was within the BMI normal range for my 5’6” height and medium frame. I also had scarcely taken a Tylenol or Advil, did not know what heartburn was, and my biggest health problem was severe allergies to pet dander when visiting friends.
All of that remained true except the last fact, which yielded to medical problems I had never even heard of, starting in the summer of 2012. I was in Montana for work and had the opportunity to do some amazing hiking in Glacier National Park. It was breathtaking and full of wonder. My biggest fear was bears – and I barely paid attention to my stiff and sore joints. I thought maybe it was just the elevation or the more technical hiking. Probably not so far-fetched. I arrived home and went to the beach with my family thinking things would go back to normal.
I think they sort of did for a bit. Until one night, the weirdest thing happened in bed. My shoulder either popped in or out of the socket–audibly. I woke up immediately, was nauseous and faint. I barely made it to the bathroom. I was sweaty and the world was spinning. I made it out of the bathroom, headed to the sofa, but fainted at the threshold. My husband sort of caught me and slapped me back to life. It was totally spontaneous and jarring – and perhaps a canary in the coal mine. But I pulled myself together and we carried on with our beach plans.
Soon however, a swath of other unexpected and unexplained physical manifestations presented themselves. The joint issues came back, but this time less sore and more excruciating, usually bearing down in the middle of the night and leaving me exhausted and less able during the day. My normally bony joints were swollen beyond recognition, and a red rash was taking over on my face like a mask and like sandpaper on the nape of my neck.
This was all just terrible and as I began to read, it quickly matched lupus. It felt like it was close to the end of the world because it was robbing me of my physical capabilities and healthy-looking body, sleep, focus, happiness, and more. I quickly sought help from several rheumatologists who all ordered the requisite battery ANA panel blood tests. The results were confounding. One physician said, “Yes, it’s textbook lupus.” Another said, “Could be pre-lupus.” The third said, “Inconclusive, but I don’t think it’s lupus. See a dermatologist.” I actually did go to a dermatologist who wanted to take a punch sample from my face. That sounded extreme, especially since to me, it was more lupus than rosacea or skin cancer. Thankfully, my gut told me to get out of that exam room.
But because I still needed some kind of action and relief, I went with the “for sure” lupus diagnosis and quickly started on hydroxychloroquine. I never loved the physician who prescribed it because he treated all this horrible stuff like it was no big deal. And in hindsight, he never explored further – and I wish he had. But what mattered then, is that his “solution” worked. The Rx kicked in and the joint paint diminished. Not so much for the cheekbone rash, but at least it was progress and I felt better. Until I didn’t.
Several months later I again found myself feeling tired and not like my past, pre-lupus, energetic self. This time, it was a myriad of vague, but persistent abdominal discomfort and then an ominous knot on my neck, kind of behind my ear. After a host of biopsies and inaccurate diagnoses, I was facing my most formidable foe yet, and one for which I had no textbook symptoms – Stage 4 Esophageal Cancer.
The abdominal discomfort that was dismissed as IBS or stress, or food intolerance, was actually caused by metastatic lymph nodes that were strangling my intestines. Of course, the cervical node too was the same type of clue, but interestingly enough, each of their tumor markers were different.
There were dark moments that were both paralytic and full of deep ache. Thinking my kids may not have a mom. I remember shopping with my sister one day. A few outfits caught my eye, but somehow, they made me cry too, because I figured the jeans with the sparkly pockets would outlive me. Similarly, I literally said goodbye to the beach where we regularly vacationed – I did not think I’d make it to the next season.
When you are 43 (now with three young kids), told to get your affairs in order, and to enjoy the next 10 months with your kids, it rather quickly commits you to either submission or defiance. After the initial devastating prognosis and subsequent advice from my doctor (which I took as an insult), I gulped and chose the latter. There were just two things all the physicians agreed upon: 1) “Stage 4. Your days are numbered.” And 2) Have a medical port placed in my chest wall and commence a systemic chemo regimen post haste, because my diagnosis took so long to obtain. But there was some debate on the details.
And here’s where the struggle got real. My local community oncologists, while compassionate, seemed limited in their ability to help. They had knowledge of, and access to, familiar formulas, but in my dire situation, I already knew it was imperative to find the right experts – the people that treat only EC – doctors who see it every day, who know its tricks, and most importantly, have access to clinical trials and novel therapies. My local practice was all too inclined to offer palliative care, but that only galvanized my resolve. “Palliative” became a word that made me cringe—even angry. I was ready for the misery of therapy if I could get some results.
Next stop was an expert in Washington, DC, who had coaxed out some pretty amazing survivals with an unorthodox (and apparently unapproved) chemo cocktail regimen. He warned me that while the treatments could help me, they could also kill me. My port was in and I was ready to go. After several consultations, I showed up, basically with my veins ready for the chemo, but ultimately learned at check-in that my insurance had rejected the nontraditional recipe. While we were willing to pay out-of-pocket, that did not solve the long-term issues. This was the first of many insurance nightmares.
We thought that was resolved and came back a week later to try again. Veins still ready, I made it past the waiting room this time and into the infusion suite. As if by divine intervention, a gentleman sitting right in front of me in one of the big vinyl lazy boys that all patients come to hate was having a full-on allergic reaction – wheezing, gasping, etc. — to whatever concoction was dripping from the pole. Nurses whisked right by me to pump him with Benadryl. I decided in that moment that I could not stay and we left.
From there, I decided to try another local teaching hospital. I heard a familiar refrain from this renowned oncologist that started, “…no matter how good the chemo is, the cancer will eventually win.”
“Good to know,” I thought to myself. One more consultation at another leading institution had already been scheduled, so I followed through with that. Though similarly ambivalent to my emotional plight, this institution had the credentials, and, I was told, the leading oncologist for EC, so I suspended my east coast search and committed to the appointment.
Chemo was scheduled for a day later that week and we arrived at the hospital by 6:45 am to get started. I really thought there was nothing left to go wrong. When we checked in, we were told we would see the doctor first because apparently insurance had rejected the pump which was the take-home part of the regimen. He said we’d have to come back another day. The emotional stress I had been enduring to work up the courage to get this poison had worn my already thin body to shreds. I was there to get my chemo because that was the first step to getting healthier.
I told the doctor that I was not leaving and that he’d have to come up with another option. I shared my long story again. I’d like to think his compassion just unintentionally looked like irritation. But I suspect his irritation just had an unintended consequence of compassion. He disappeared for a little while and returned to tell us that he could switch out the drug that used the pump for one that I could take orally. The regimen was less widely used here in the U.S. but was part of standard care in Europe. At that point, I didn’t really care. I thought a placebo might have worked, too.
One of my very worst days was this first. After the nightmare with insurance, I finally received my first infusion of EOX (Epirubicin, Oxaliplatin, Xeloda). The drip of the red epirubicin was a very obvious reminder of the toxicity dripping into my veins. It took all day. Finally, as we embarked on the hour plus ride home, I thought I could sit back in the car and rest, leaving the trauma of the day and the traffic to my husband. We were both spent.
It was June and warm. I grabbed a water bottle that had been in the car all day. The very first sip sent sheer lightning through my veins. We were 20 minutes gone from the hospital and I could not breathe. I truly thought I was going to die on Interstate 95. We called 911 and paramedics met us at the first rest stop. They administered oxygen and albuterol. Things calmed down. They called it a panic attack. I was sure it was an allergic reaction. What I later learned is that the oxaliplatin causes extreme sensitivity to cold temperatures. Even though the water bottle was room temp, it nearly killed me. I learned to avoid that later, but what I could not avoid was the rush of air, cold and air-conditioned from room to room, that I walked into or the lower temps of grabbing juice from the fridge. It made my jaw freeze to the point my mouth could not form words and my hands did not work. It was awful. There was also longer-term neuropathy in my hands and feet – and of course, the expected hair loss.
But I persevered, because I had to. In retrospect, this combination of false starts and rejections may be part of the reason I’m still here. I received 8 cycles of EOX — two cycles more than most people, resulting in interval resolution – progress! – with each scan.
While this was all great, I was already sensing that there were no backup plans or next steps, even though I felt like I had done my part to succeed. I asked about surgery and radiation but was told that I was in no way a candidate for either because I still had metastatic (though diminished) disease.
I had read about cell apoptosis, where radiation can actually turn your immune system to high alert to kill more cancer. When I raised it, the subject was met with no reaction. The doctor basically reminded me that “cure” is not a word used with EC. The data suggests that because so few patients survive, quality of life often trumps extended aggressive treatments.
While his data may have been right, it was only right for the majority of the patients – those in the middle of the bell curve. They were usually men over 60 who indulged more and exercised less than me. Since I was an active 43-year-old, who never took a drag of anything, and only enjoyed an occasional drink, I was relentless in my appeal to not be grouped with “them”, though it mainly fell on deaf ears.
Through a close connection and a stroke of luck, I met another physician who happened to lead the radiation oncology department of a major teaching hospital and had a special interest in EC. This experience was completely different. He thought I had a chance to outrun this disease. He immediately saw the life in me rather than the cancer. He discussed options – even untraditional ones that he thought my otherwise healthy self could manage. There were no certainties, but hope was important.
I had a chance for a consultation at yet another renowned institution — a place that everyone hears about. Those appointments are impossible to get and so I couldn’t back out, even after starting to pursue my ray of hope. I always figured that more information, more data was better, so why not? Ultimately, all of these consultations made me a smarter patient. I took copious notes and bounced questions from one doctor to the next.
I knew enough to not expect any silver bullets or easy answers, but after being sized up, and told I was operating at about 80% capacity, I was defeated. I may not have been in top condition, but after 6 months of brutal chemo, I was still active and strong. I took a deep breath and excitedly shared my current course of treatment and the hope that it would clear up residual metastasis so that I could make it to radiation and surgery. An esophagectomy is not something most people would wish for, but I knew it was my best shot at ridding my body of the cancer. I prayed for this to become a reality every waking moment.
This expert dismissed my ambition and hope. He also told me I was basically being sold a bill of goods with the radiation dream I was on. He echoed what one of the first providers had said, “eventually your body will resist the chemo and the cancer will win”. I was honestly speechless, defeated, and left in tears. It took me a few days to recover from this, but I knew in my heart that I still had hope – it was just going to be found elsewhere.
I went back to the other institution and made it through unorthodox chemoradiation. Follow-up imaging confirmed exactly what we had hoped. Both the primary tumor and some of the metastases were diminished enough that surgery could be an option.
I finally got my chance to meet the thoracic surgeon. His first words were, “We really shouldn’t even be having this conversation.” But we were. While there were a number of tests and near-term challenges, I had to make it through. I think my surgeon realized I wasn’t going away until this happened. And on June 9, 2014, after 15.5 hours of surgery, it did.
Recovery went well and life was even getting back to normal with mop-up chemo and frequent scans. Then, about a year later, a scan revealed a malignant recurrence from the same primary source. I was once again the subject of treatment discussion at Tumor Board, but better than the alternative of letting it grow in silence.
The cycle started again. Surgical biopsy and the need to make treatment decisions. But several years had passed since my diagnosis and those years brought scientific discovery. Things got even more interesting. My multidisciplinary team had the foresight to do tumor sequencing and test for microsatellite stability. Surprisingly, I came back negative for Lynch Syndrome (a familial cancer), but I had high Microsatellite Instability or MSI-H. Rare for esophageal, but fortuitous for me, because it made me a candidate for possibilities of immunotherapy. My physicians were able to get it for me based on the compassionate use rules since I had basically failed other lines of treatment. This turned out to be the best thing that ever happened to me. My MSI-H now explains why all of my markers over the years were so inconsistent and inconclusive. MSI-H means you have a high degree of fragmented, unchecked mutations. It sounds terrible. But, in a great twist of fate, this condition makes immunotherapy more likely to work. This predicament and access to immunotherapy is what saved my life.
That was more than five years ago just as immunotherapy was becoming a new option. While my present will always be carefully tracked and my future an incredible gift that I know is not guaranteed, I am grateful every minute for the chances I have been given. Every time I was told “no” because of my staging, we found a way to make it a “yes” and eventually got the extra chemo, radiation, surgery, and the immunotherapy before it was approved for EC. All of these modalities, plus an army of family, friends, and medical professionals, have played a role in my ultimate survival.
None of the treatments, decisions, or conversations came easily, but all of them inched me a step closer to survival. I share all of this now, because as a patient and advocate, I want to convey what I have learned so that others may also find what they need to survive with less struggle.
For me, it required a mix of tenacity, muscle, humility, vulnerability, competitiveness, and high-level organization to manage my family, work, and a full- time schedule for treatment – not always feeling great.
Cancer is tricky and can control us in many ways, but patients still have power. Even when you don’t think you do or think you can, I learned that there’s always a small lever you can pull to keep the gears moving. You can make a choice to control something every day. It can be a big thing like getting up to exercise or go to work, or a little thing like making sure you take that supplement that you believe in or meditating your way through very real physical discomfort and emotional despair.
Staying engaged and staying vocal about your health is one less thing that cancer take from you. No matter how bad I felt, I could mitigate it by getting up, exercising in some way, and getting dressed for the day. It became a habit and a mantra — never do less than you did yesterday and dress like you want to feel and be treated. And, importantly, be your own advocate. Read and ask lots of questions. Get involved. Connect with people. You never know what you will learn.
One of the most important things that I try to emphasize to patients and caregivers, whether they are newly diagnosed or forced back in the ring, is the gift of connection. It really can be the difference between life and death, both emotionally and physically. Illness, whether chronic or acute, can be one of the most isolating, scary places you will ever be. When you are in that despair – that pain – when you are in the center of the merry-go-round and life is twirling around you – the laughter, the colors, the noises – acting as if nothing is wrong, there is little that can break the field like the words of someone who has been there. This is a power that hardly any family, friends, or physicians will have because they have not walked in these shoes. They have not curled up in the fetal position after chemo, they have not felt the tremors as a neurologic disorder sets in, they have not woken up in a puddle of their own sweat or with night terrors about the unanswered questions, they have not had to change their will so their children are looked after, or explained to teachers and coaches why their kids may be distracted. They have not fasted to prepare for procedures, nor have they been nauseous over the results. And that is fine because they will be there to support you in other ways, but what you need are people who can cut right to the core because they have lived the same experience. These people who have come before you will validate where you are, understand your words, your hopes, your dread; they will give you tools to cope, give you ideas to consider, questions to ask, and hope to hang on to.
Just one connection can give you enough reason to make it through the next day. And there are some connections that impart so much more and even change the course of your care, improving your treatment. Getting to the next day is not trivial – in effort nor impact. It may take everything you have, but science is changing fast and that next day may indeed open new doors.
That is what happened to me. Through adversity, I also found opportunity. But that only happened because my own connections, self-advocacy, research, skilled physicians, and some luck, kept me alive until my breakthrough was available. That breakthrough was immunotherapy and while I know the future is never certain, I know I would have not had the past five years without it.
Find your team. Read. Question. Share. Make connections. Listen to your gut.
Dana Deighton is an accomplished professional with experience in corporate marketing, publishing, and partner/project management. After 20+ years at National Geographic, she is now Associate Director of Outreach and Strategic Partnerships at Scripps Research working on the All of Research Program, a historic effort to accelerate research and improve health by gathering data from one million or more people living in the United States.
Outside of work, she is focused on healthcare advocacy and policy. She serves as an Executive Board Member of ECAN, is a Patient Representative on the Locally Advanced Esophageal Cancer Guideline Panel for the American Society of Clinical Oncology (ASCO), a member of NCI Patient Advocate Steering Committee and NCI Esophago-Gastric Task Force and serves on the Esophageal and Stomach Cancer Project Patient Advisory Committee, a project led by the Broad Institute of MIT and Harvard. After many years as a caregiver to family members and surviving her own health crisis, Dana thrives on improving and empowering patient communication and connections to drive better health outcomes.
Dana lives in Alexandria, VA, with her husband and three teenagers, and enjoys travel and walking and running outdoors.