A Year Like No Other
2014 was quite a year for my wife Julie and me. Her symptoms, which began in January while we were on vacation, included dizziness and high blood pressure.
Over the course of six months, Julie was seen by a variety of doctors across several states as we traveled and tried to go about our normal lives. At one point, she was so dizzy that we went to an emergency room while visiting family in Northern California. After two days in the stroke unit, where everything but her abdomen and pelvis were scanned, Julie was discharged with a diagnosis of anxiety.
We found a new primary care doctor back home in rural New Hampshire, and Julie finally had a CT scan on her 59th birthday. That scan revealed a 5 cm mass on her left kidney.
While it was a relief to get an answer, and a profound lesson in patient advocacy, we both knew how serious this was and how important it is to get the very best care. My sister had undergone a nephrectomy just 3 years earlier at the Cleveland Clinic. Her procedure was difficult, and she may not have survived if she hadn’t been at a world-class facility. Julie and I agreed that going to Cleveland for a urology consultation was the best approach, so we scheduled an appointment and drove 600 miles to Ohio.
The surgeon recommended a laparoscopic nephrectomy, which he performed the next week with no complications. Even before she received the official diagnosis of stage three clear cell renal cell carcinoma, we discussed the likelihood of the cancer recurring. We wondered how we would manage living year-round in our New Hampshire lake house, far from a major medical center.
Therefore, while Julie was recovering from surgery, we decided to move and made an offer on a house in Ohio. We ended 2014 with one less kidney, and one more house!
A New Role: Caregiver
Can you describe your experiences caring for your wife?
Being a caregiver was a new role for me and not one I expected to be very good at performing. After the panic of the diagnosis, I struggled with not being able to “fix” this.
Julie and I are fortunate to be able to talk honestly with each other, which helped us to accept that both of our lives had changed. Throughout this entire process, we have been able to work together to adapt to each new reality.
Planning and strategizing come naturally to me, so it gives me some sense of control to deal with “cancer admin,” such as scheduling, insurance, and pharmacies. This also gives Julie the freedom to focus on activities that are important to her, such as working in her art studio.
The most difficult aspect of treatment with axi/pembro has been dealing with all of the side effects and trying to maintain a good quality of life. So far, I have been at every appointment with Julie. I keep a detailed planner to update the care team and various specialists about any new symptoms or concerns.
What advice might you offer to a patient or spouse of someone newly diagnosed with kidney cancer?
It’s okay to be overcome with a range of emotions initially. Fear and shock are normal, but so are anger, resentment, and even anticipatory grief. Nobody planned for this and the future looks uncertain. Go ahead and feel these things.
However, the sooner you accept the situation, the sooner you can begin to move forward and help your loved one. Caregiving presents challenges for even the most resilient people, so try to find ways to stay mentally healthy. If you are unable to cope effectively, reach out to people for help and support.
“Being there for appointments and infusions is an important aspect of caregiving, because the patient may not be feeling great or be able to keep track of what is discussed. It’s true that the extra set of ears is crucial.”
– Tracy, wife and caregiver
The Decision to Move Closer to Care
What can you share about the decision to move for care?
We had watched friends in New Hampshire deal with cancer and the difficulties of access and transportation, as well as finding doctors who were up-to-date on the newest treatments. We were also at a point in our lives where we were contemplating a move; Julie was an art teacher for 30 years and had retired in 2011, so we could be flexible. After her surgery, we looked at the odds of progressing to stage four and agreed that having a world-class hospital system nearby made good sense for us.
When the cancer was found in her lungs in August of 2017, she began seeing Dr. Brian Rini, who advised active surveillance. In fact, she was still under his care in April 2019 when the FDA approved the axi/pembro combo based on KEYNOTE-426. In December of 2019, Dr. Moshe Ornstein took over Julie’s case, and she enjoyed a total of 38 months of surveillance before the cancer progression required treatment in October of 2020.
We have been very satisfied with our decision to come to the Cleveland Clinic. The staff are so caring and have deep knowledge and experience with kidney cancer. A few years ago, when Julie was hospitalized for another reason at a different facility, an oncologist there saw her records, told her she had kidney cancer, and said she needed to start taking Sutent immediately, which would not have been the best choice for Julie’s condition. She had indolent disease and did not actually need systemic treatment yet. We have seen firsthand the necessity of advocating for your health and finding kidney cancer specialists.
“Palpable Enthusiasm” for the Future
What made you decide to become an advocate for kidney cancer research funding?
I discovered KidneyCAN and Smart Patients several years ago, and the information from both sources has been incredibly valuable to us. After taking early retirement in 2021, I was free to spend some of my time engaging in advocacy. Many patients do not have the resources or energy to advocate for themselves, so this is one small contribution I can make on their behalf.
It has been almost eight years since Julie’s original diagnosis, and since that time, the treatment landscape has been revolutionized. The enthusiasm among kidney cancer specialists about the future is palpable – they just need the funding to conduct the research that will move us closer to a cure.
The Impact of KCRP on Patients
What would you like clinicians and researchers to know about the Kidney Cancer Research Program (KCRP) award process and how these High Risk/High Reward programs impact patients?
Since its creation in 2017, the KCRP has awarded $135 million to further its mission of promoting high impact research in kidney cancer. However, annual funding is not guaranteed and must be approved by Congress each fiscal year. Patients and their families are eager for major breakthroughs in treatment – giant leaps instead of baby steps – and the KCRP program offers researchers the opportunity to test innovative approaches that will advance current standards of care.
Optimism on Hard Days
What is something that motivates or inspires you on harder days?
There are some exceptionally compassionate and brilliant people engaged in kidney cancer research and treatment. Their optimism helps when we are going through a rough time with side effects and day-to-day hurdles. It’s also helpful to remind myself that we are very fortunate in many ways, and I don’t take the good things for granted.
