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 April is Vicenta Salinas. Here is her story:
Our GIST story began early May 2020. Both of us are teachers and had been working from home since Spring Break due to the pandemic, spending most of our afternoons doing what we enjoy so much, working in our yard. On May 1st the state parks were reopened and we decided to visit Resaca De la Palma State Park for a hike and birdwatching. The following day Manuel was in a lot of back pain. We attributed the pain to all the physical work we had been doing in our yard or maybe he had just worn the wrong shoes for the hike. He had three sessions with a chiropractor but the pain persisted and kept getting worse, keeping him awake most nights. While doing his three-month blood work he mentioned his pain to his doctor who ordered a CT scan lumbar spine w/o contrast. Results came back and the doctor only mentioned a 1.6 cm hypodensity in the left kidney.
By this time, Manuel had to visit the emergency room due to urinary retention problems so the doctor became concerned and ordered another CT scan with contrast this time. We were concerned as well but we thought his pain was just a pulled muscle or pinched nerve. I requested copies of the first scan to keep in our medical files. That’s when our nightmare began. Since it was the Friday before Father’s Day, she purposely had omitted to tell us that there were multiple lytic lesions on the osseous structures and iliac wings suggesting metastatic disease.
Needless to say, this was the scariest time of our lives. We were distraught and frightened, not able to sleep or eat. We feared the worst was yet to come. When the second scan came back, the doctor confirmed that the kidney lesion was a small cyst but also there was an 11 cm mass at the level of the prostate displacing the bladder and multiple lesions on his spine and lumbar bones, multiple lower thoracic vertebrae and a 5 cm lesion on the base of his lung. At this point we didn’t know if it was lung, prostate, kidney, bladder, bone or what type of cancer it was. She asked where he wanted to be referred to. At first, he wanted to be treated in our local oncology center but my sons and I convinced him to go to MD Anderson. We wanted him treated in the best cancer hospital and we were only six hours away, a trip we made frequently to visit one of our sons.
I was told to stay strong, not cry or show him how scared I really was. We were both so scared and devastated and even as I tried to stay strong and positive there were many times that the only thing we could do was cry together. Thinking Manuel was going to get traditional chemotherapy or perhaps radiation I tried preparing him physically, mentally and emotionally for what lay ahead. We knew we had a long, difficult road but I kept reassuring him that we would pull through this nightmare and I truly believed that.
An appointment was set up at MD Anderson pretty quickly and what had always been a fun, exciting trip to Houston was the hardest and saddest one we had ever done. Our son and daughter-in-law accompanied us on the first trip to offer much needed moral support. We first met with Dr. Escalante and she reviewed the first scan reports. She told us it was most likely a malignancy and several biopsies were done on a Monday. We were told results would be ready in a week and decided to return home on Tuesday only to get a phone call From Dr. Escalante the following day. Our worst fears were confirmed, it was indeed a malignancy and it had metastasized. A very rare and aggressive type of soft tissue cancer she said. We went back to Houston to consult with specialist Dr. Anthony Conley on Friday. We made the trip back to Houston devastated and brokenhearted not knowing what more to expect.
We went to that appointment, nervous and scared of what the doctor had to say but at least Manuel was close to starting treatment to battle this cancer that had invaded his body. On our way to MD Anderson, I googled Dr. Conley and read all the qualifications he had. I assured Manuel that he was going to be in the best hands with Dr. Conley and I felt reassured as well. First, we spoke with a Fellow who told us that this cancer was not receptive to traditional chemo or radiation but that Dr. Conley would be the one to go over the treatment plan. When we were alone in the room, we didn’t know what to think, if it’s not chemo or radiation, what is it then?
When Dr. Conley came in the first question he asked Manuel was how he was handling his pain. Were the pills Manuel was taking enough or he could prescribe some stronger pills. He went on to explain the diagnosis of metastatic gastrointestinal stromal tumors. It was stage IV and incurable. Surgery was not an option. He told us to see GIST as a chronic disease and that Manuel would have to take a pill, Gleevec, for the rest of his life. The doctor told him to go on and live his life and do the things he always does but to listen to his body.
We were so relieved and overjoyed to hear there was a treatment option and how successful it had been for many people. The first day of taking his pill Manuel had a very bad side effect but after taking it for several days, he started feeling the benefits. We have returned twice to MD Anderson to meet with Dr. Conley, most recently Jan. 19th when my husband was informed most of his tumors are shrinking or are stable. He has since retired after 35 years of teaching emotionally disturbed students and is focusing on his own health. We know that this is something we will have to live with for the rest of our lives. We don’t know the future but we are very hopeful and optimistic on the progress he has made in the last seven months. I pray he continues to heal.
Coping With a Loved One’s GIST Diagnosis
I realize that at this time my husband’s needs are greater than mine and my full support, help and love for him is unwavering. As a caregiver you also need time for yourself. Time to do the things you like and time to take care of your bodies and minds. I cope by keeping my mind and body busy with things that I love such as going out for a jog, running 10ks, gardening, watching a movie or simply taking a needed nap. Staying positive, keeping a good sense of humor, bringing laughter into our lives, and enjoying activities together as often as possible are other ways that has helped us both cope with the added stress cancer has brought into our lives.
Advice for Fellow GIST Caregivers
My advice to other caregivers is to be positive and take one day at a time. Offer your loved one emotional support to make them strong. Rely on family and friend for support and always take care of yourself to better care for your loved one.
Hobbies We Enjoy
The hobbies that we enjoy together are many. We love working in our yard, tending to our butterfly gardens, and the many plants we have planted together. We enjoy day trips to South Padre Island to take walks/dips on the beach, dolphin watching, or just to enjoy a good seafood meal and a walk afterwards. We love birdwatching and are lucky to live in a birdwatching paradise. We love visiting state and national parks every chance we get.
We listen to a wide range of music genres daily. We also enjoy a little dancing. Whenever possible we take road trips to many different regions of our big state from the Gulf Coast, to the Panhandle, the Hill Country and the Piney Woods. Our last road trip last summer took us to Utah to visit the impressive Monument Valley. We are very passionate about these hobbies, nature, and music and are fortunate to have passed that passion on to our sons.
I don’t have a particular mantra. I simply try to let optimism, positive thoughts, laughter and dancing guide my life, one day at a time.
“Tengo la musica por dentro.”
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: firstname.lastname@example.org