Jonathan Palmer, LEO Study Participant & Kallie Palmer, Wife and Registered Cancer Nurse
Jonathan Interview:
My name is Jonathan Palmer, and I am currently in maintenance phase of treatment for Acute Lymphoblastic Leukemia (B-ALL). This “journey” started in 2019 when I was getting a routine physical with my general practitioner. In March and April of 2019, I began feeling tired, having difficulty walking upstairs, losing my appetite, having night sweats, and regularly running fevers. After pushing me for weeks to make an appointment with our general practitioner, my wife finally demanded I go to the doctor. When I arrived and began telling my doctor of all these symptoms, she decided to run some blood tests and asked if I could stay until the results were back. My doctor came back some time later and sat down. “Your blood counts are irregular and may be indicative of cancer,” she said. “Unfortunately, I cannot let you go home today. I need you to go to the emergency room. I have already called ahead and have referred you to a specialist I know.”
When I heard those words “may be cancer”, I could not believe it. It was a shock. It literally had never crossed my mind that I could EVER get cancer. I did not smoke, I was relatively young, I exercised, and tried to eat healthy. It just did not make sense. On May 14th 2019, I walked into an outpatient facility as a concerned patient and left being diagnosed with B-ALL. From there my life took a sharp turn into a direction I was quite unfamiliar with.
I spent 22 days on the oncology floor of Emory Winship Cancer Institute in June of 2019. During that time, decisions had to be made about living as a cancer patient and trying to hold together your “old life.” Bills do not stop, work is waiting, and a million other personal and financial decisions had to be made in “preparation” of something that was always in the back of my mind. When I was inpatient, the option to participate in the LEO study was brought up, and I decided to join. By participating, I could shape future treatment approaches and maybe help others.
Cancer has taken away one thing and yet given another. Cancer takes away TIME. Time that you might not have. It urged me to dig deep and make sense of it all. I finally learned to let go. I let go of the fear. What’s the point of being afraid? Is cancer scary? A resounding YES, but the rest falls on you on how to handle it. I’ve learned that addressing the emotional and mental toll of cancer is just as important as treating the physical aspects. I urge anyone reading this to know that your mental health is important and to not shy away from asking for help. I found working with a psychiatrist or joining a support group was a great way to wade through the waters of cancer treatment. I’ve always lived by the motto, “you can’t change the circumstance, but you can change how you react to it.” I learned to live each day to the fullest and that the loss of time made it that much more precious.
Kallie Palmer Interview:
When Jonathan was first diagnosed, we were devastated. All I could envision was the future we had planned, the life we built together vanishing. I was terrified of losing my best friend. We had been together since we were 18. At 33, I couldn’t imagine being without him. Then as he began his treatments in the hospital and later outpatient, we began to settle into a familiar routine: treatment every Tuesday and Friday, bone marrow biopsies and lumbar punctures every few weeks, lab reports, doctor visits. Cancer and treatment became our new normal. Slowly, the fear was replaced by an appreciation for life and the joy of living in the moment. Going through cancer treatments with my husband has given me a clearer perspective on what is important and what isn’t. Most of the things we stress about daily are not worth the worry. Today, I don’t stress minor details, and I try to remember to be grateful for all the blessings that we have. Jonathan is still here and healthy almost two years after his diagnosis, and that’s the biggest blessing of all. He’s in maintenance treatment and will be until December 2022, and I’m forever grateful to his doctors and nurses who continue to keep him going. Most of all, I’m amazed at my husband’s unrelenting positivity. He’s a superhero to me. After all that’s he’s been through, he still keeps a smile on his face and says “Thank you” to everyone involved in his care.
I would tell other spouses and support people to live each minute with gratitude that you get to spend another day with your loved one. Bad days, good days, boring days, sad days, happy days. I would also tell them it’s ok to cry. People think being “strong” means never showing sadness or tears, and that’s just not true. There were some days in the beginning that Jonathan and I just laid in bed together and cried. There will be rough days, and there’s no way around that. Be just as compassionate to yourself as you are to your loved one. Most importantly, be patient with yourself and with your loved one. Cancer is hard, and the learning curve is steep. Rest when you need to rest and don’t feel guilty about taking some downtime. The physical toll of being a caregiver isn’t even close to the emotional toll you will feel. Be gentle with yourself at these times.
When Jonathan was first diagnosed with ALL, I was working on an inpatient med-surg floor. Even though I was a nurse, I knew relatively little about oncology. I pulled out my textbooks that I still had from nursing school and began reading about cancer treatments, particularly blood cancers. I wrote down questions and took long lists to Jonathan’s doctor appointments.
About a year into Jonathan’s treatment, I transferred to the infusion center at Winship. From my time as a patient’s wife, I saw the nurses treating their patients with so much compassion. I saw them laughing with their patients. I saw them hugging their patients. I saw the kindness and the dedication, and I knew I wanted to be a part of that patient experience. My time as a patient’s wife has shaped my approach as an oncology nurse. I have a totally different understanding of what the patients and their loved ones are going through. I’ve experienced all their emotions first-hand. The despair, the fear, the helplessness of being a caregiver and wanting nothing more than to take away the pain and fear your loved one is feeling. I’ve felt it all. Knowing these emotions on a personal level has given me a greater appreciation of the patient experience. My sincere hope is that my patients know how much I care. When I have a patient who is having a particularly difficult time processing what they are going through, I share my story with them because I want them to know there is hope. There is always hope.
As a nurse, I’m glad I can use my own experience to guide my practice and help my patients feel like someone understands what they are going through.
Juan Davila, LEO Study Participant
Juan Davila Interview:
Although I had heard of the word lymphoma as a cancer, I had no idea of what the condition entailed prior to my diagnosis. Because I was too shocked to learn that I had advanced Follicular Lymphoma (stage IV), I decided not to make any big decisions except to do as my oncologist, Dr. Lossos, told me. Through research, my sisters and I found that Dr. Lossos at Sylvester Comprehensive Cancer Center at the University of Miami was an eminent authority on lymphoma. However, there was a 6-month waitlist for an appointment with him. Thanks to a dear neighbor who worked at Sylvester, we got an appointment sooner. When I met Dr. Lossos, I knew he was the right choice.
After I was diagnosed, I was open about discussing my diagnosis to my family and a couple of friends, except my 84-year-old mother. I thought it would worry her too much and being a mid-octogenarian, I did not want to worry about her health. I figured that after the 7 months of R-CHOP chemo, I would be in remission. Though I was cancer free for 5 months (a period in which I underwent Rituximab maintenance immunotherapy), the lymphoma came back. That’s when Dr. Lossos prescribed a bone marrow transplant. At the point, I decided to tell my mother. My family and friends were my real ‘immune system’ during treatment.
Surviving cancer cleared my vision just like windshield wipers do in a storm. Could withstanding so much suffering from chemotherapies and horrible side effects be the price one pays to have a sharper sensory perception? My respect for all living things has increased –from plants to insects, to birds and even to the biggest animals. Today, my awareness level of the present moment has also sharpened. I am more present and listen more acutely, allowing me to sense the interconnectedness of everything surrounding me.
Post-transplant, economic insecurity became the biggest battle to overcome after cancer. Thanks to the love from my family, friends, and the psychiatric/psychological team at Sylvester, I began to trust in my resilience. Today, I am steadily rebuilding as I grow stronger each day. I am regaining financial freedom through a new vocation that I truly enjoyed, not one that only breeds stress. With the help of Sylvester’s Cancer Support Services, I realized that fighting cancer had really made me stronger, gave me a new worth, and forced me to endure, giving me tools to rebuild anew regardless of what others think I can or can’t do.
My motivation to join the LEO study was one, because Dr. Lossos was a part of it and two, my desire to help others afflicted with this difficult illness. I would be honored and pleased if sharing part of my experience ended up helping someone. In fact, I literally owe Dr. Lossos my life. Never have I met such a fascinating, smart, and caring doctor. As earlier stated, when meeting Dr. Lossos, intuitively I felt that he truly cared about my well-being and was going to do whatever it took to keep me alive.
Joe Kanevsky, LEO Study Participant
Joe Kanevsky Interview:
We had heard of lymphoma before, but when I was diagnosed with Large B cell lymphoma that particular type of cancer was something I was not aware of. It was discovered at the Veterans Administration in West Palm Beach, FL.
We found out I had lymphoma because I unfortunately needed to go to the emergency room for an unrelated health issue and perhaps by divine intervention, they gave me an ultrasound. And there it was…the big C! They told me that I needed to have a biopsy to figure out what the scan showed.
After I learned the results from the biopsy, my wife and I were shocked by the diagnosis. We decided that I would receive radiation, which involved driving up to the VA Monday thru Friday for a period of three weeks. In the meantime, my wife was researching every waking hour about large B-cell lymphoma. She learned that there was a great clinic in Miami called the Sylvester Comprehensive Cancer Center and we immediately made an appointment with a wonderful doctor, Dr. Jonathan Schatz. When we met with Dr. Schatz, he suggested a treatment called “mini chop” and I asked him whether I would be able to tolerate it. After several months of treatment it was time for my first PET scan to check the results. The treatment worked and I have been cancer free for three years.
I have been very open about my condition with family and friends. My wife did a lot of research and was completely supportive in my cancer journey. She was there for all of my treatments. I am grateful to the doctors and nurses who helped me get well. If my story and participation in the LEO study will help even a single person then it will bring joy to my wife and I. We hope it will help many people. It is so important not to be discouraged and to never ever give up!
Mr. Kanevsky’s advice for newly diagnosed patients:
• Keep a positive attitude.
• Do your research.
• Prepare questions to ask your doctor.
• Be accepting of others’ help.
• NEVER EVER GIVE UP!