When Cancer Comes Home
Don S. Dizon and Christine McGinn
I remember being at home when Christine texted me.
“Who do you trust in Boston for head and neck cancer.”
It was an odd question. Christine McGinn is one of my closest friends at Brown, and she happens to also be my partner in my practice, where we treat breast and pelvic cancers, and sarcoma. All of our patients appreciate her greatly, and I have come to trust her without reservation.
“Why do you ask?” I texted back.
That’s when she texted me: Her brother had just been diagnosed. Fast forward to months later, I have witnessed the toll that occurs when someone you love is diagnosed, the consults they obtain, the treatments given, and the complications of cancer care. I have seen Christine play advocate and sister, have seen her determination and her tears.
I asked her to look back on it for this discussion and I was so grateful that she agreed.
1. What was it like when you first heard your brother had cancer?
Devastating really. Cancer? I was stunned. Unable to speak and all I could do was sob. I mean SOB. I was on the Cape that weekend; he called me from the parking lot—"It’s cancer." Those two words were uttered from the other side of the line, during a phone call that I had been dreading all weekend. Normally weekends feel short and are over in the blink of an eye, but that weekend lasted a lifetime. See, my brother is the "Master" of all things FUN. He is the rock in our family. He is the entertainer, the person who just makes you feel happy and welcome wherever you go.
My mind was constructing and deconstructing scenarios all weekend. Not only were we facing a cancer diagnosis (cancer is scary enough), but now dealing with cancer during a pandemic. I knew this would affect us ALL.
Early on, he asked me what led me into oncology…was this an even greater purpose? This was the first time I considered the question earnestly.
2. It must’ve been really hard to be both a sister and an Oncology NP. Can you describe that?
First, I had to accept that I couldn't fix this. I knew I could help—I could motivate, I could educate/inform and be a resource for him and his family. But I knew I couldn’t cure him.
From that day forward I promised to be his advocate and would do everything I could to support him. Cancer wasn't a stranger to me. We had gone through this with my father years ago. My brother was the navigator of his care back then; I was too young. He handled it all.
Now here I am years later as his sister and also a new practitioner in the field—trying to help him navigate his own diagnosis.
3. Was it hard not to be a medical voice in his life?
It didn’t feel like it was an option for me really—I felt it was a gift in many ways. I was so lucky to have the support of my family here at Lifespan Cancer Institute. They helped me arrange appointments and consults and whatever else we needed. There was no lag in time.
One of our GI Oncologists, Dr. Khaldoun Almhanna, agreed to see him right away. He was different than any other doctor we had met. He not only informed us of the next steps, but also helped bring us out of this funk we were all in. He helped my brother see this diagnosis in a new light, embrace each moment, and never lose hope for the best. That meant so much to me.
4. Did this change how you practice? How you approach people with cancer?
Every single time I meet a new patient I ask them to tell me their story. How were they diagnosed? What were their symptoms if any? Having them explain to me while I actively listen helps me build a strong relationship with the patient.
I’m constantly reminded of how it felt to be on the other side of the room during my brother’s initial appointment. It was a scary day to say the least. I always heard from my patients that the waiting time after diagnosis is extremely difficult. Now I can say myself it’s most certainly the worst part. The diagnosis process feels like it takes a lifetime. The different consults, the biopsies, the exams and procedures… and the scans. The anxiety around all these appointments is real. Knowing the cancer is there and waiting for it to get treated is an awful, helpless feeling. And to my patients—I’m sorry. I didn’t get it until now. What else have I learned?
- It has taught me patience on a whole new level. It's made me more aware of how we explain things to people.
- It taught me how cancer affects not just the patient but their entire family.
- It taught me the importance of follows ups and follow through. For instance, if my patient displays significant symptoms during an appointment, calling to see how he or she feels later in the week shows a level of caring and concern that patients really appreciate. I know because I did.
- It made me realize we don’t have complete control of what happens inside of our bodies, despite our best efforts. I think it’s important for patients to realize this. It’s nothing anyone did.
It also has reinforced how important it is to me that patients feel comfortable with me, from the second I become part of their care team. I want them to feel they have a support person they can lean on and feel open to ask any questions at any given time.
Health care is inevitably busy at all times, but allowing patients adequate time to address questions, fears and sometimes just time to "be" is priceless. Most importantly—a diagnosis should not change the way you view someone—at the end of the day, we are all people.
5. How has your brother, and by extension, your family, experienced health care? From your lens as a cancer care professional?
I know he is so grateful for his health care team. He always tells me how "good" everyone is here [at Lifespan Cancer Institute]. He talks about how everyone here "knows your name" and it's these little things that make coming here day in and day out so bearable. That makes me so happy and proud to work where I do. This experience has changed me; I will never be the same again. Maybe I am stronger, or perhaps I’ve learned a new way of life, a new normal.
6. What things do you think clinicians should know when/if someone they love is diagnosed with a serious illness?
Knowledge is power: Try the best to focus on facts, not fear (which I now know is not an easy task at all).
Stay optimistic: You can be a huge support to your family member by taking over tasks such as scheduling appointments, picking up/dropping off prescriptions, hanging with their kids or pets; doing household chores for them (I even learned how to cut the grass this year). Go on family bike rides, have a movie night, try to keep things as normal as possible.
Support your own mental health through this as well as your loved ones: Don't forget about you! If you are not taking care of yourself first, it will be almost impossible to care for anyone else (this has not been an easy one). Take long walks, confide in the ones you love.
As the popular saying goes, “You can't control the wind. But you can adjust your sails.”
NOTE: This blog was created and reviewed with Christine's brother's input. It is published with his permission.