By Susan Chappell – Caregiver
January 27, 2019
In the beginning
When my loved one heard “you have cancer”, especially since there were no evident symptoms, I thought there must be a mistake. I wanted a do-over. Surely, they were wrong.
Once his illness was confirmed, I watched helplessly as my husband of 24 years at that time went through the stages of denial, anger, bargaining, depression and acceptance. I was not welcome to participate. The process was his. I could not add value, alleviate anything, resolve the situation, or offer solace of any kind.
For the first trip to MD Anderson in Houston, I sat firmly in the car in spite of orders to get out. Not a word was spoken during the 6 hour drive. Once in the hotel room, when he accepted I wasn’t going away, he shared that he did not want me to see him vulnerable. This admittance took effort, humility, an opening of his mind to reach out and no longer try to handle the situation all alone. I admired him for that.
The circle of informed parties consisted of him, me, our son (a medical student in Houston) and the doctors. Not what one would call an expansive support group. For over a year. While the doctors monitored the disease progressing at an increasing rate, I led a double life. At work and with friends and family, all was just peachy while doctor visits and trips to MD Anderson provided education in courses I resented, presented by empathetic, competent teachers.
And it starts
There comes a time when action must be taken to let the cancer know you are aware and it is unwelcome. Terms like standard of care, clinical trial, advanced directives, and mutations are introduced. My husband started down that path with a positive attitude and gave the elimination of cancer no room for failure. “It’s All Good” was the motto. Once treatments started, more members were invited to the inner circle. Our daughters, parents, siblings, and friends were read in and prayer warriors began their campaign.
I was skilled in computer programming by education, bank operations by training, and managerial service through work opportunities. The medical experience I had acquired was from caring for our three children through common childhood illnesses.
My medical expertise was significantly expanded when it was required that I change dressings, flush lines, and administer medications multiple times during the day – in the morning but not drug #2 as it interacts with # 1 and #3, around lunch but not within 1 hour of eating, and in the evening but only after eating 2 hours prior. Oh, and be careful, if you do it wrong, you could make him worse, or even kill him. I learned a lot. And took my responsibilities seriously.
There were times when I resented his need of my time, his dependence on me, his physical challenges, and then feelings of shame and guilt would swell over me. How could I think of myself when he did not ask for the situation either? He never complained. He powered through discomfort, pain, uncertainty, and hours and hours of waiting, just waiting. I would remind myself he needed me to be positive, supportive, capable and always present to take whatever action was needed. If not me, then who? It helped a LOT to insert humor, even if I was the only one laughing.
Gratitude provides consolation. For all the medical technicians, clinical trial participants, peer patients, medical physicians, competent nurses, research scientists, Pilots for Patients pilots and ground angels, I constantly felt immeasurable gratitude. For their courage, innovation, energy, compassion, sacrifices and vision – they made it possible that my husband could live and in doing so, help his parents, participate in his children’s graduations, walk his daughters down the aisle in marriage, hold his grandchildren and continue to be my best friend. What a gift they were!
Our family and friends provided virtual and physical hugs and constant positive messages throughout the years. Knowing their diligent support and love surrounded us gave us tremendous comfort.
The first time someone asked me how I was holding up, tears sprang to my eyes and I was speechless. I had never even considered the impact my husband’s cancer had on me. My job was to do whatever was needed with no pause for investigating how I felt about it. What good would that do? Examining would lead to questions I could not answer and would only make me feel uncertain, unqualified, and sad.
I was blessed to be allowed to perform my full-time job working remotely all while being the caregiver through multiple clinical trials and ultimately a stem cell transplant. Attitude defined each day. In the evenings, I had the pleasure of writing frequent updates to family and friends so they could have the most up-to-date status. Most times this was fun as we would insert humor. Here is an example from Day 3 after the stem cell transplant –
The technicians at MDA are unsurpassed. They are ALL friendly, professional, and each one on every shift now are our best friends. They even offer SPA benefits on the floor. For example, there is the Tranquility Room for those patients wanting to meditate. If a patient needs some encouragement or additional information, there is the Consultation Room. And for those who skip through the halls, laugh too loud, or generally cause a ruckus, there is the Isolation Room.
Life after “Cure”
Six months after the successful stem cell transplant, tests revealed continued presence of leukemic cells. Seriously??? Downhill went the emotions and the marathoner powered through yet another caustic wave of treatment. Unwelcome, burdensome side effects flourished and were slowly managed away, leaving permanent damage as reminders. Finally, we heard “deep molecular remission” and it was like giving cool water to a long-suffering wanderer in the dessert.
Was normalcy too much to expect? What truly is the new normal after cancer? We learned first-hand that inserting another human being’s cells into a new body was not without reaction. Referred to as graft-vs-host disease, another chapter began and with it new treatments requiring weekly trips to Houston, creams, lotions, salves, medication, monitoring tests, central line, and boosts to the immune system. In fact, maintaining the suppression of leukemia while controlling the dominion of the donor cells has been quite the challenge. The doctor described the process as “cumbersome”. An understatement for sure.
There is no end to cancer, no getting back to normal. One may no longer address the actual cancer, but instead, address the side effects of the treatments survived. As the caregiver for my husband of 36 years now and counting, I am privileged to lift a portion of the burden suffered, serve as a light for the dark days, and celebrate the wins as they come. We proudly continue living God’s promise daily…..together.
Susan McGraw Chappell, Executive Director
ULM Advancement, Foundation and Alumni Affairs
Susan joined the University of Louisiana Monroe (ULM) in 2014 as Executive Director. She is responsible for providing the vision and effective management necessary to achieve the Advancement, Foundation and Alumni Affairs strategic plans in support of the University of Louisiana Monroe.
Prior to joining ULM, Susan worked in banking with JPMorgan Chase (and predecessors Bank One, First Commerce Corporation and Central Bank). She currently serves on the Board of Directors for Habitat for Humanity and is a Rotary International Member.
Susan obtained her Bachelor of Business Administration in Computer Information Systems and French with a minor in Accounting and Masters in Business Administration from ULM.
Susan and Ryan have been married for over 37 years and are blessed with a son and two daughters, their spouses, and 1 granddaughter with two grandchildren to arrive in 2019.
Originally published in The CLL Tribune Q1 2019.