My name is Fred Ginsberg, and along with my wife and caregiver, Lori, I have survived more than 13 years with Kidney Cancer. My cancer is now a Stage IV cancer that has metastasized in both of my lungs. I have survived this disease all these years because I am a Cancer Warrior! My wife and I have never let my cancer dictate our lives. We have lived WITH it and lived THROUGH it each and every day. There have been so many loving, gifted and supportive hands along the way that have added to my journey. Surviving cancer is not a solo act. Those involved with your treatment can lift you and empower you in ways that are unimaginable.
2006 was a year that was destined to change our lives forever! I have lived with Atrial Fibrilation and kidney stones for many years, which added Warfarin (blood thinners) to my daily medication regimen. We were barely coming to terms with the loss of Lori’s mother from Pancreatic Cancer, when 3 months later, it was my turn. I went to the bathroom and discovered an abundance of blood in my urine. Off to the Emergency Room, where the doctors assumed that I may have unknowingly passed a small kidney stone, and having been on blood thinners, that may have been the cause of the bleeding. No ultra sound was ordered and we were discharged with the advice of following up with our Urologist if the bleeding continued. Awaiting scan results in the Urologist office, we had no inclination that our world, as we knew it, was about to come apart! We heard the word “Cancer” as a very probable diagnosis to my situation. Cancer? Me? Us? How can that possibly be? The following week I was recovering from a left kidney Nephrectomy, awarded a relatively comforting Grade II diagnosis because the 13cm x 9cm tumor seemed to be completely encapsulated and had not spread. Now it was gone and we celebrated being cancer-free even before we had time to integrate the full meaning of cancer in our lives!
Now, however, we had an Oncologist join our life to monitor the cancer that came and went. Undergoing CT scans every 3 months was worth the joy of hearing the positive results from each scan…Cancer Free! Over and over again…Cancer Free! 3 months of scanning now lengthened to 6 months. We were Cancer Free! However, when scanning my abdomen, my lower lungs were inadvertently included in the scan view, and there it was! Small tumors in my lungs! A most agonizing Open Lung Biopsy confirmed we weren’t Cancer Free at all. The Kidney Cancer traveled, leaving me with Stage IV Metastatic Kidney Cancer in my lungs!
Confirming to ourselves that Cancer was not a solo act, we found our way to the most incredible doctors at Sylvester Cancer Center, in Miami Florida. We met Dr, Rakish Singal, who more than 10 years later still remains our Oncologist. The tumors were too small to be included in a new and exciting trial, so he pulled his phone out of his lab coat and called Dr. Dao Nuygen, who scheduled an appointment to see him the very next day. Two major Thoracic surgeries later, Dr, Nuygen removed 14 tumors from both lungs. Cancer Free once again! However, time moves on and so does this disease and the tumors returned. Now, after the surgeries I have endured, I am no longer considered a good surgical candidate. Chemotherapy and radiation had found its way to our fight. From Sutent, the first-line chemotherapy protocol used to fight kidney cancer, we jumped to Votrient. Eventually we had to abandon both treatments because the side effects were unbearable and removed functional quality of life. When surviving modern cancer today, you hope to stay alive long enough to move on until the next treatment is discovered. For us, that was the approval of OPDIVO, a relatively new immunotherapy treatment. I continued with ODIVO for one year, comparatively with minimal side effects, until January of 2019, when this Cancer Warrior almost lost his fight.
Unable to eat with a non-existent appetite, I lost 30 pounds within one month. During that same time, I passed out on 4 different occasions and found my way to admittance to a hospital after each event. I suffered seizures, tremors, chemical encephalitis, memory loss and atrophy of my frontal lobes, and I have endured adrenal insufficiency, all later to be determined as side effects from by easiest treatment, OPDIVO! Now life was never to be the same after enduring life-altering and permanent changes to my brain and endocrine system, not from my cancer, but from my cancer treatment! We were terrified and needed to find some emotional help to held us move forward with our “new normal”. Unable to continue with OPDIVO, I was put on a maintenance dose of Prednisone and a cancer treatment called Cabometyx, which actually caused my tumors to shrink a bit, but the side effects were once again unbearable. I needed to cease treatments for 2 months to let my body rest and will resume shortly on a lower dose because my tumors all got larger without treatment. Though having lived with cancer for 13 years, I am once again back at the start line with a new lower dosage of a drug that may once again turn my life upside-down.
Sitting in the waiting room for an appointment at Sylvester Cancer Center, my wife noticed a card on the table for Gilda’s On The Go, a cancer support group for cancer patients, caregivers and anyone impacted by cancer. That was our “golden ticket” to mental and emotional release. During our 13 year cancer journey, we never felt the need for emotional support, but now it was clearly just what we were looking for. We walked through the Red Door at Gilda’s Club in Fort Lauderdale, and found our way home to a community of people who knew exactly how we felt. Gilda’s is a place where you can share your story, your fears, your joys your experiences with and through other people touched by cancer. There are separate meetings for cancer patients and another for caregivers, each supported by the most compassionate and loving facilitators. Within those rooms you spend 1 ½ hours, one time a week, getting lifted by others in the same situations and you lift others as well. You learn from others through their experiences and lives can change drastically through the give and take advice shared with the members in the room. Some people find the need for support groups because their diagnosis is new and they do not know what to do or expect or need to share their inner thoughts with compassionate ears. Some others, like us, have traveled this road for 13 years and found the missing piece on our journey, now that our lives have changed so drastically. Through Gilda’s Club Cancer Support Groups we found a loving group of people who knew exactly how we are feeling because they are feeling that way as well. I can relate to those patients walking into a support group with a new diagnosis and treatment because I am there with the same questions and fears now that I have to resume treatment with a drug that could again take away my quality of life.
Our lives have changed since finding Gilda’s support groups, even by realizing that you are not in this situation alone. We have learned as much as we have taught others. Our lives have improved through recommendations from other patients and/or caregivers. You have a place to convey feelings that you may never want to share with your partner in a safe and confidential way. Walking out of the door after a meeting you may feel empowered and stronger than when you walked in. We, at Gilda’s Club, are impacted by cancer and our own family and friends may not be able to understand what we are truly feeling when not living in our shoes. Roles may become reversed in a patient/caregiver relationship and each may need to learn how to deal with their new responsibilities. You may live in an environment where you have no help at all, yet within your groups you find friends who are compassionate and may offer many resources to help you. You are tired and may still be working at a full-time job. Anger and fear may rule your lives but through the group you realize the importance of not being alone. Support groups are just that…emotionally supportive. At Gilda’s Club, many programs are offered to members such as Tai Chi, yoga, painting, writing, cooking, improvisation, dancing, mindfulness awareness, talent shows, potluck dinners, etc, as well as targeted lectures by professionals from our community.
We have attended our meetings with fear and hope, with tears and laughter, with despair and encouragement, but have never left the same way as how we have walked in. Support groups have the inherent power to change you, whether small or in life-altering ways! Sometimes you may speak, while other times you may just choose to listen to others. Support groups are personal and may not be for everyone. We have walked through Gilda’s red door and found our way home! Through this journey we have found ways to stay strong, be our own advocates, ask questions, offer long-discovered advice and find laughter and smiles every day! We are Cancer Warriors fighting the fight and after 13 years, still winning!
- Fred and Lori Ginsberg
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Together we can continue to empower our members and strengthen their hope.