Zach Juno shares his journey as a caregiver and fierce advocate for his mother, a stage 4 kidney cancer survivor.
I’ll never forget hearing it. “Your mother has a tumor the size of a tennis ball on her left kidney” That was the day I became my Mother’s advocate and cancer caregiver. This was in March of 2006 and the landscape of kidney cancer was so different. We kept reading things like “Renal Cell Carcinoma doesn’t respond to chemotherapy.” I immediately started reading statistics on the disease and remember breaking down in my living room. My mother, who has always been the center of my world and only 58 years old at the time had cancer and I just wanted to save her. I think I was trying to save myself too.
We were referred to a Urologist in the town she lives in. Our whole family attended the meeting and I’ll never forget how callous the surgeon was. My mother was terrified. She had lost her own mother to cancer and now here she was dealing with her own diagnosis through that lens. The doctor dismissed our questions. He dismissed my mother’s concerns which I feel were appropriate. In that moment, she just needed to hear that someone was going to take care of her; fight for her and he didn’t give that to her. We walked out of the door and said in unison “That man will not touch you”.
My mother was in no emotional shape during this time, so I took over finding care for her. After having HIPAA waivers, I got all her medical records and sought out care. We ended up at Roswell Park Cancer Institute with Dr. Kim who was a Urological Oncologist. I’ll never forget how they treated Mom. When we walked into the hospital, they greeted her, “Welcome Mrs. Juno – We’ve been expecting you”. When she met Dr. Kim, he took her by the hand and said, “I’m going to take great care of you”. I think it was the first time my mother exhaled since she was told she had a tumor on her kidney.
We opted for a full radical nephrectomy and surgery was scheduled quickly. Mom did very well. The pathology report came back. She had Clear Cell Renal Cell Carcinoma, stage 1, grade 3. Our family enjoyed remission. We rejoiced in it.
I wish I could tell you our journey ended there.
After an 11-year remission, Mom had some lung nodules that were changing. We immediately got her into the hospital where she had a core needle biopsy guided with CT imaging and it was confirmed that her lung nodules were indeed RCC. This made Mom’s cancer Stage IV. We were hearing words like “Incurable, manageable.” Again, fear came to me but here is something about fear. It may seem like a mile high and a mile wide, but it’s only paper thin. You must step through it and get into action. By this time, I was managing an operating room for Emory University Hospital Midtown in Atlanta which is an academic medical center. I’ve learned that there is a LOT of good work being done across this country and you don’t necessarily have to travel across the country to find it. I also learned that as a caregiver, I have a responsibility to make recommendations and offer love and support, but this journey is really my Mother’s.
I have to allow her to make decisions and feel good about those decisions. I haven’t agreed with them all either. She jokes with me and others that long after she’s gone from this world, I’ll come summon her and tell her “Come on Mom. They have a new treatment”. We laugh because it is true. I’ve never apologized for being a fierce advocate for her.
We ultimately went back to Roswell Park which is 3 hours from her home and her oncologist recommended Sutent or Votrient because Mom has such a long period of remission between initial diagnosis and recurrence. Her case is referred to as “good risk cancer.” I pushed for an Immunotherapy in combination with targeted therapy. If you don’t know what these are, I suggest you look at: https://kccure.org/patient-information/ .
Even though, I think that Mom would have done great with this course of treatment, she ultimately decided to try Votrient. Mom has now been on this treatment for close to four months and she has had a tumor burden reduction of 50%. This essentially winds the clock back. Mom is tolerating this drug with minimal side effects with the most notable being fatigue. She rests when she needs to but she’s still living big!!!
I think it is important to acknowledge fear as a caregiver with this journey. I have two small sons (Age 3ys, 20mo.) I very much need my Mom. My children need their “Grama.” As a cancer caregiver on this journey with Mom for 13 years now, I’ve had to realize that my Mom has evolved in her ability to drive her own care. While she may have started out paralyzed by fear in 2006, that isn’t current state and I must allow her to own this. That doesn’t mean that I won’t make strong recommendations, but they must be posed as questions. “Would you be willing to try this?”
For any good outcomes, our loved ones and patient must be engaged in their own care. It is crucial. When Mom gets scared now, I remind her that when she was diagnosed, there were only three drugs to treat her cancer. There are now 14 drugs. That is why research is so important. We must push forward the treatment of this disease so that there is more precious time together. We aren’t the perfect family. We haven’t navigated this without blunder but one thing we do have is love and respect for one another. It is our love that carries us through this journey and life.