This year marks the 13th anniversary of Carmen Rice’s survival from Glioblastoma Multiforme (GBM) – the deadliest brain cancer that is widely regarded as incurable and universally fatal. Carmen’s thirteen-year survival is nothing less than miraculous and last month, we shared her incredible story with you. Today, we’d like to share Darrell Rice’s story. Darrell is Carmen’s husband of 42+ years and, as her partner, primary caregiver and advocate, he has been and continues to be at Carmen’s side every step of the way.
A Diagnosis of GBM
In 2004, Carmen was diagnosed with GBM, the deadliest brain cancer that kills 91% of patients within three years of diagnosis. At that time, Carmen’s doctors gave her six months to live and said there was a chance that she would not survive the surgery. Despite this grim prognosis, Carmen and her husband Darrell remained positive and hopeful. Thank goodness Carmen survived!
After surgery to remove as much of the brain tumor as possible, Carmen underwent radiation and chemotherapy. Despite this rigorous treatment plan, Carmen’s tumor returned in the same spot as her initial brain tumor four years later. With this recurrence, her doctors gave her six weeks to live…But Carmen continued to beat the odds and today, she lives a happy, healthy and active life with Darrell after surviving the “unsurvivable” GBM for 13 years.
Remembering the past thirteen years, Darrell notes that wrapping his brain around Carmen’s diagnosis initially was no easy task. Carmen’s treatment regimens were grueling and the side effects were life changing. He vividly remembers when Carmen lost her ability to walk. Over the years, there have many times when he had to feed her, bathe her and help her with the simplest of life’s tasks. He recalls, “There were days when it seemed like it was just too much but looking back, I see that the entire ordeal has made us both stronger.”
Being a caregiver is often far more difficult than most people realize. Feelings of sadness, frustration, anger, resentment, anxiety, fear, isolation and tremendous stress often accompany a life-threatening diagnosis like GBM. In addition, many caregivers often forego their own wellness while caring for their loved one.
Darrell says “When you learn that the one you love the most in the world may die of brain cancer, your life is changed forever. I knew I had to be strong for Carmen and yet my own emotions were very fragile and, at times, hard to keep in check.” Darrell accompanied Carmen to every appointment, surgery and procedure. But to truly be there for her—both physically and emotionally—Darrell had to manage his own stress. That meant accepting help from family, friends, neighbors and co-workers; joining a support group; setting realistic goals for each day and never giving up hope.
Fast forward to today, the importance of instilling hope in others facing a diagnosis of GBM is of paramount importance to Darrell and Carmen. They are enthusiastic speakers within the cancer community, inspiring others with their positive outlook and message of hope. The couple talk about how grateful they are to NFCR for the groundbreaking research done in the GBM field.
The American Brain Tumor Association has built an online Caregiver Resource Center created specifically for brain tumor caregivers by brain tumor caregivers. The extensive online center provides comprehensive information and resources to help caregivers anticipate, prepare for and better cope with the unique needs of caring for someone with a brain tumor.
Today’s Research Will Lead to Tomorrow’s Cures
Led by the best and brightest cancer researchers, GBM AGILE is a revolutionary global collaboration to test and develop new brain cancer treatments. Its personalized approach will allow us to accelerate the discovery of targeted treatments for individual patients.
This global coalition has attracted over 150 participants from more than 40 leading cancer institutions across three continents. It implements a new generation of clinical trials – called “adaptive trials” – which allow patients to be enrolled more quickly, receive treatment with multiple anti-cancer drugs simultaneously and does not require years of follow-up to determine whether a new experimental treatment is beneficial. This revolutionary approach accelerates research for curing the aggressive form of cancer GBM and will serve as a new clinical research model for combating other cancers as well. As a founding member of the coalition, NFCR has continued to take a leading role in this unprecedented effort. It is anticipated that patient enrollment may start in the first quarter of 2018. Stayed tuned!
Advice to Caregivers
- Talk with your doctors about what to expect and how to plan. Recovery after treatment can take a long time and helps to feel prepared. Also ask about palliative care at the beginning of treatment.
- Reach out to others who are also caring for someone with a brain tumor. Their experiences and insights can be very helpful.
- Break tasks into manageable pieces.
- If it’s hard to ask for help, start by picking just two or three things someone else can do.
- Don’t be too hard on yourself or try to be perfect. It’s difficult to adjust to the “new normal.”
- Know that there is no one right way of doing things.
- Aim to balance between caring for your loved one, caring for yourself and caring for others in your life.
- Secure proper authorization that allows you to gather copies of medical and treatment records. If you have not previously done so, discuss end-of-life concerns with the person you are caring for. This is a very difficult yet important conversation to have as advance care directives help ensure that a person’s health care wishes are known and respected.