As a part of our Faces of Courage series, we are featuring a patient or caregiver story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.
Our Caregiver of the Month for February is Bonita Morgan. Here is her story:
GISTory
February is the month in which Valentine Day falls. It is a pleasant diversion in the cold winter to celebrate commitment to our beloveds with red hearts, candy and flowers. Romantic love and the emotions of love play a part in our lives but for GIST caregivers, love generally becomes action.
Douglas & Bonita Morgan, California, USA
Shortly after Douglas and I were engaged in 1996, Douglas began to experience internal bleeding. An intrepid surgeon decided to take a look and removed a lemon-sized mass and a short section of the small bowel. The mass was simply referred to as a soft muscle tumor which was not likely to reappear. Douglas was released from the hospital on Valentine’s Day and we went about building our lives together. We both love to travel and have had wonderful experiences through the years which we remind ourselves of frequently during this year of being homebound. On bookshelves in our family room are pictures of every trip we have taken together, my arm around Douglas and his around me. These are lovely reminders of our years together. Because Douglas is a professional oil painter and I have had a lifelong interest in art, studying it in college. we have enjoyed visiting art museums around the world.
In 2017 in preparation for hernia surgery, a mass was observed near Douglas’s liver. CT scans confirmed GIST and surgery was performed by Dr. Carlos Corvera in San Francisco. He successfully removed a large mass and one third of Douglas’s liver. Gleevec was prescribed post-surgery until testing showed no presence of KIT which obviated the use of Gleevec. There were no other treatments available. The roller coaster began in mid-2019 with the re-emergence of tumors which responded to two new drugs developed for melanoma, – avapritinib and encorafenib. These drugs worked well until they didn’t, and testing showed the presence of an additional mutation. Surgery was performed again in November 2020 to ”de-bulk” and there was a second trip to the hospital for five days between Christmas and New Year’s 2021 for high blood calcium. The search for an effective treatment for his GIST continues.
Coping with GIST
Over the years, Douglas has had many opportunities to demonstrate his love for me through emotional support and generosity of heart. I had been slowly transitioning my love for him to being a caretaker first and foremost and have assigned my selfish desires to secondary or tertiary status making Douglas’s needs primary.
Being resilient physically, mentally and emotionally for me has three components which overlap; faith, support and maintaining my equilibrium. They are like the proverbial three-legged stool: each is needed for support.
Faith is a very personal topic so all I will say is that I devote time early in the day to reinforcing the principles I chose to live by; selflessness, service, humility and compassion. Meditation, as messy as it can be for me is a component of this practice as is a daily gratitude list which I share with a few select friends.
Support of family, friends and organizations like Life Raft Group are invaluable. When I retired from forty years of working, I realized I would miss the camaraderie of the work environment and I made an effort to develop a group of female friends who to fill my need for companionship outside of my life with Douglas. As we cannot meet in person, we have periodic Zoom sessions, taking turns to bring each other up to date on our lives. These are the women I call upon when I need emotional or practical help. People are always willing to help but are unsure what they can do to ease the burden. I have found being specific about what I need is important. So, I may ask a friend comfortable with dogs to pick up our furry companions from daycare one day a week for a set period of time. Or I may ask another to run errands for me. Specificity about the urgency or importance of the task is also important to communicate.
I have three brothers and a sister in different parts of the country with whom I was not in the practice of sharing life’s ups and downs. When our situation became more serious, I informed each of them. They all have different skill sets and have made it clear to me they are available if and when necessary. Regardless of whether I ask for their assistance, it felt good to share our situation and allowed me to feel less alone.
The Marin Cancer Center has a myriad of services besides doctors which include nutrition, treating side effects and emotional health. We have taken advantage of some of these services but the Life Raft Group has been an invaluable support to both Douglas and myself. Douglas has used the GIST Mentor program for patients and I have reached out for a caregiver mentor as well.
Last fall Life Raft Group began a facilitator-led Caregiver Support Group which meets weekly on Wednesday. This is an open group and different faces show up from week to week, some attending with regularity. Each of our situations are different, we have a variety of challenges and are in different cycles of life and the disease of GIST. Some are older like myself while others have children in the home compounding the caregiver role. I cannot state very clearly the benefits I receive from these weekly sessions except the reassurance that I am not floating alone on a sea of uncertainty and fear which has been a wonderful gift.
I have not had to be an advocate for Douglas as he has been very competent himself but if I need to be, I know Life Raft Group is a primary resource always ready to assist. Seeing the help Douglas has received from the LRG has been a positive experience. Knowing exactly where to go and having names of LRG staff provides me some peace of mind. Being familiar with available resources and where to obtain support gives me a foundation of security which is essential to keep from being overtaken by worry. I often remind myself I have everything I need to face any problem that arises. There are days that I have to repeat this to myself dozens of times.
Hobbies I Enjoy
Taking time for myself generally involves ensuring I maintain my equilibrium. Meditation which I have practiced on and off for many years became integral to personal balance. I meditate for about ten minutes early in the day and when I go to bed. After the reoccurrence of Douglas’s GIST in 2019 he asked me to teach and meditate with him which we have done continuously at least once a day. As he is more structured than I we use Insight Timer and have found numerous meditations we both enjoy. A shared meditation practice has brought a new level of connection and love to our relationship.
Being out of doors is rejuvenating and I love activity. I have difficulty sitting still so my outdoor time involves gardening and projects such as repairing the irrigation lines or painting outdoor furniture. Simple home fixes are a favorite pastime but sometimes I come up with a harebrained idea for home improvement which is a cause for humor. Being in Sonoma County California with its temperate Mediterranean climate means I can be comfortably outside throughout the year. A few hours outside and a hot bath and I feel like myself again.
When Life Raft Group asked me to tell my story under the heading of “Caregiver of the Month” I initially wanted to decline knowing there are so many GIST caregivers worthy of such interest. I have met some in the LRG support group and am impressed by the humility, strength and compassion they bring to their role. I hope something I have shared here is helpful. Douglas and I are grateful to be members of the LRG community.
Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.
Criteria for Patient of the Month
- Patient must be a member of the LRG GIST Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has GIST Patient Registry Online
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Criteria for Caregiver of the Month
Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.
Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: skaur@liferaftgroup.org
