Lessons Learned from the Health Journey of a Cancer Survivor and Caregiver

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As I write this, we are in the midst of one of the most devastating health crises in history.

Every day, I painfully watch the parallels between what we are experiencing as a society and my own personal health journey as both a caregiver and a patient; mostly, how I had to learn foreign concepts very quickly, assess and interpret data, and make critical, life altering decisions for my son’s (Emmett) diagnosis and for mine. Everyone is feeling in one way or another what I’ve been through. But on a positive note, I’m witnessing amazing technology solutions, such as telemedicine, emerge to help patients… solutions I’ve been waiting on for a looooong time.

Did we really need a global pandemic to be the catalyst for this to happen?

 

 

 

 

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I want to shape the future of how technology can help improve access to care for patients and caregivers (like my son and me). My career in healthcare started at two different healthcare technology companies. My very first position in health IT was right out of grad school as a customer service representative. I became keenly aware of everything that was “wrong.” Then I progressed into physician practice management where I trained users on clinical information, patient records systems and electronic data interchange services designed to reduce cost and facilitate patient care in the physician practice. It was then that I was inspired by the capabilities of health IT to transform the lives of all stakeholders in the healthcare ecosystem. From there I was on to the world of pharma where I witnessed big dollars that could make a big difference for cures and disease reduction.

In the middle of this meaningful, mosaic career I was struck with what unknowingly would be the first of two shattering, life-changing events of my health journey. My younger son was diagnosed at 10 months with a chromosome disorder so rare that its resulting “syndrome” doesn’t have a name. His genetic karyotype is one of three known cases in the world. As a result, my son—now age 14—doesn’t walk, talk or do anything for himself. He is immunosuppressed, medically fragile and requires 24/7 care and monitoring, similar to a 6-month-old baby. And like a baby, he needs lifted, diapered, toileted, fed, medicated and is up several times per night. Figuring out his wants and needs is dependent on interpreting his facial expressions and cries.

In the process of determining his diagnosis, we stopped counting after visit to 60 different specialists, but there were many more. This was prior to EMRs. Emmett’s chart easily weighed 10 pounds and traveled from health facility to health facility. With each specialist who walked in the room and made us repeat his story, I bluntly and emotionally asked them: ‘Didn’t you read his chart? Didn’t you talk to the other physicians?’

It. Was. Annoying.

My husband and I possess three Master’s degrees between us, both worked in healthcare, and were dumbfounded by the lack of communication, lack of continuity and lack of information to help us navigate Emmett’s care. Being resourceful healthcare executives ourselves, we expected the clinical experts to find additional information to guide us on how to proceed from diagnosis to actual delivery of services to help our son achieve his best possible outcome:

• What therapies would be best for him?
• What sensory stimulation should we be doing for him?
• Are there supplements he should be taking?
• How can we connect with other families with similar challenges to try to emulate their success?

We had no playbook, and really no hope from our medical team. We felt like we were on a rare disease, special needs island with no way of connecting to the mainland. We were definitely navigating unchartered waters. Now 14 years later, we still are. Emmett has a part-time private duty nurse and attends an excellent school with incredible therapists. But I’ve had to fight for every support mechanism and every piece of adaptive equipment we have in place. My husband and I routinely say to each other, ‘If this is how we feel as educated, devoted advocates for our son, what is everyone else doing?’

Fast forward to another challenge on my health journey. I was always athletic, thin, a healthy eater, a non-smoker and a rule follower. So when I started experiencing symptoms of abdominal pain, fatigue and blood in my stool, I ignored them. When the pain became too much to bear, I saw my primary care physician who also wasn’t alarmed, but ordered a colonoscopy just to rule anything serious out.

Unfortunately, the colonoscopy revealed a situation about as serious, and unexpected, as it could get: an 11 cm tumor in my rectum that a PET scan revealed had metastasized throughout my body to my liver, lungs and lymph nodes. I had 27 tumors in total and a diagnosis of stage IV colorectal cancer. The news came on my 44th birthday.

That was about as tough as it gets for a mother of two young boys (10 and 8 at the time), and one being completely disabled with special needs. After I read some grim statistics and felt sorry for myself for about a day, I decided I had to give this everything I had to try and beat it for my family.

I did a ton of research, collaborated with my team to put together a durable treatment plan, and went to work. After 55 chemotherapies, two surgeries (the second of which was to identify the source of internal bleeding that happened during my first surgery which caused me to code and sent me into cardiac arrest), recovery in the intensive care unit hooked up to eight tubes, two blood transfusions and cyber knife radiation, I defied all odds to become cancer free. I’m what is known as an exceptional responder in the clinical literature. I don’t know why I beat it down so effectively against the odds, but I’ll take it.

Be Your Own Best Advocate

One huge positive that emerged from my dual devastating diagnoses and shifted my health journey was my superpower of advocacy. In my work on the healthcare delivery side, little did I know how hard you have to fight for equipment, therapies, medications, imaging, nursing, second opinions and basically EVERYTHING that is medically necessary for a patient to receive optimal care on the consumer side. Because of my education and professional healthcare background, I found myself more equipped to navigate this myriad of roadblocks assembled to cut costs.

I knew the language to use and the evidence to present to fight insurance appeals and win. I spoke up in online support groups to advise and empower patients on what to say and do to get what they needed to survive and thrive. I emerged as somewhat of an expert and even created resources and advice from my health journey. And my alter ego was solidified: Big Stace. Could be because I’m 5’11” but more because I’m not afraid or intimidated by anyone to fight for my life, my son’s life and the lives of others.

In my work, I’ve found that often times patients are afraid to question their healthcare team, particularly physicians, fearing backlash. It is absolutely okay to ask questions until you feel comfortable. Physicians WANT you to ask questions in order to fully understand and execute their plan. The best healthcare outcomes are based on a solid foundation of partnership that begins first and foremost with the patient. Utilize the internet, utilize outside research, utilize other information—but also listen to your healthcare professional who has years of medical training and expertise, and what they have to say.

Creating Empowered, Accountable Patients

Over these past 10+ years of caring for Emmett and facing challenges on my own health journey, I often wondered, why can’t we just do a phone consult, and as technology evolved, a web consult? And even in the past five years of my diagnosis when I was so nauseous and exhausted that I could barely move, why can’t we just do a web consult? I asked many physicians and healthcare stakeholders, ‘Why can’t this happen?’ I got various answers: privacy concerns, lack of interoperability, lack of reimbursement. Really?! But yet somehow in two months, we got over all of these hurdles right quick. Incredible!

The capabilities I am most referring to, and optimistic about remaining post-COVID19, are telemedicine, remote patient monitoring, and interoperability of patient electronic records. I am hopeful that because of these technology breakthroughs we will see a durable shift of power and accountability for healthcare into the patients’ hands.

Here’s an example: My 75-year-old father was having acute pain and inflammation in his hands (he has psoriatic arthritis), shortness of breath and fatigue. He has heart disease and a history of hemolytic anemia. Two telehealth visits, one with his primary care provider and one with a hematologist, were able to order the appropriate bloodwork panels to reveal that he wasn’t hemolyzing, but rather is suffering with hypothyroidism. The physicians further collaborated to order an ultrasound of his thyroid as a precaution and started him on medication. Those two telehealth visits saved at least four physical visits (along with wait times) to the office, just to order tests. We are pursuing ways to monitor my father’s comorbidities at home, since he is immunocompromised and we want to minimize his risk of exposure during COVID-19.

Luckily, my father has me to coordinate these appointments for him. So back to my earlier question, “What does everyone else do?” This is where the responsibility of education and health literacy to properly utilize these technologies lies with all healthcare stakeholders in the ecosystem: patients, advocates, insurance companies, clinicians, health systems, tech companies, pharma companies, government, non-profit organizations, etc. As well as the responsibility to furnish access to connectivity in the first place as a basic utility, such as water or electric. It’s the responsibility of everyone I’ve ever worked with or for. And if you’re reading this article, the responsibility lies with you.

Hope in the Form of Telemedicine

Watch Dr. Nohr of the Canadian Medical Association talk with HIMSS TV about telehealth and person-enabled healthcare during the COVID-19 crisis and beyond.

As I told a University of Pittsburgh first year, first day class of medical students, ‘Patients ultimately want two things: hope and options.’ We’re finally to a point where telemedicine is an option. It for sure shouldn’t replace the in-person encounter and relationship between healthcare provider and patient, but it is an option.

How does this option provide hope? I’ve learned from my cancer advocacy work that thousands of cancer patients are not receiving optimal care due to social and/or geographical determinants of healthcare outside of their control. They live miles and miles away from a cancer center equipped with the technology and treatments needed for their disease. Because of financial and/or disease constraints, they can’t physically travel there. How do these patients access the best care that they deserve? Through telemedicine second opinions.

Can we as the healthcare stakeholders in the ecosystem develop a template of necessary information for oncologists and surgeons to assess a case (e.g., pathology, bloodwork, treatments already tried, comorbidities, imaging, etc.), transmit it over a secure network across health systems and assure these patients that they are getting the best-in-class care that they deserve?

Here’s where tech/EHR companies/health systems should hire patients/caregivers to help compile the data we need to make this happen. It is my belief that this could safely and securely be done via an app. It may not necessarily change the outcome, but when I was given a less than 10% chance of surviving five years with my illness, you’d better believe that I said, ‘If I go down, I’m going down knowing that I did everything I possibly could.’ And certainly everyone should be granted that swing for the fences chance at beating cancer.

I am fortunate to be doing very well with my cancer disease status, so I fight and speak for others facing that diagnosis. I still look forward to genetic breakthroughs for Emmett, and would like to be hooked into places doing research to help improve his quality of life. I should be able to do that via telemedicine. There are so many more capabilities for telemedicine to connect patients to care – for patients too sick to leave their beds, for patients who are disabled or on life saving equipment and have to be lifted and transferred into their wheelchairs, for patients who have to take public transportation for over an hour to see a doctor.

We see what has been done. We know what can be done. Let’s keep pushing each other to innovate, work from the patient up, and ultimately, save lives.

The views and opinions expressed in this content or by commenters are those of the author and do not necessarily reflect the official policy or position of HIMSS or its affiliates.