As part of our Faces of Courage Series, we are featuring a patient of the month on the 13th of each month.
Why is the number 13 significant? 5,000 people are diagnosed with GIST each year in the United States.
That’s 13 people diagnosed each day. Read more about this on our Rare 13 site.
Our Patient of the Month for January is Theresa Rogers. Here is her story:
Thank you for naming me Patient of the Month. I am truly honored being selected as there are so many other brave and courageous patients that are deserving of recognition.
I am not sure how brief my GIST story can be because in all likelihood mine has been close to a 60-year journey. In 1958 I was born with a serious heart defect, Tetralogy of Fallot, which killed most newborns at the time. When I was four the doctors were to perform surgery for only a partial correction (that’s all they knew to do at the time) but my labs came back abnormal and showed that I had kidney cancer. They removed my kidney and followed-up with radiation treatment. Once I recovered from the kidney surgery, they then performed the open-heart surgery. (I actually remember the hospitalization of both of those surgeries albeit 55 years ago.)
In 1972, at the age of fourteen, the technology was advanced enough to perform total correction of the heart and I underwent my second open-heart surgery. Fast forward thirty-five years, outside of the regular cardiology monitoring and occasional heart blips I was able to bear three healthy sons and live a fairly normal life. I never saw another Nephrologist (kidney specialist) since my childhood because I was “cured” (that was a mistake). My physicians at the time gave no indication that I could have any other occurrences of cancer. Then in 2005 I started feeling out of sorts. My blood counts were low but I was often anemic due to my heart disease so my doctor twice increased my prescription iron intake. When that didn’t work I had an ultrasound, when nothing was found I had a CT scan. Nothing was found on the CT scan yet my anemia continued to get worse. I twice swallowed a camera that took pictures of my GI tract and nothing, I had an endoscopy and colonoscopy and still nothing.
Almost one year of test after test after test, and blood work after blood work, nothing was found to be the culprit. Then one day I fainted and was rushed to the ER. The CT scan showed that there was significant bleeding into my intestine (but no clear images of any tumors). My surgeon who was knowledgeable of GIST suspected that could be the cause but would not know for sure until he performed surgery. It was indeed a GIST tumor 6cm in size and was enfolded on the outside wall of the small intestine. It wasn’t until the CT scan captured the bleeding in progress into the intestine that they could actually see any problems. Luckily the entire tumor was completely resected and I went on Gleevec for one year with the prognosis that I had a better than 85% chance of staying cancer free.
Eight years after my first GIST diagnosis, regular oncology visits, and CT scans, I began having unbearable pain in my belly and it caused me another trip to the ER. Since I am very colloidal (due to colitis) and have had four other abdominal surgeries an achy belly was a norm for me. While in the hospital many tests were ordered, blood labs, CT scan, endoscopy and colonoscopy yet nothing showed up other than a slight blockage of my intestine. The doctors thought if I was NPO for a few days my intestine would loosen and unblock itself. When that didn’t work they performed surgery and buried in the midst of all the surgical adhesions was a .5cm GIST tumor. The tumor was resected but when the pathology came back it showed that it was not a metastasis but rather a totally different genetic makeup from the first GIST.
I then decided to seek out the professionals at MD Anderson Cancer Center in Houston. As a patient who has had congenital heart disease, Wilms kidney cancer, fibroid tumors, skin cancer, thyroid cancer and two different types of GIST cancer tumors, I needed some answers. Well, their genetic testing gave me no answers other than I am just a weird duck! None of my diseases are inherited nor should I pass them on to my children. They did say however, that the radiation treatment I received as a child for my Wilms tumor could be a cause for tumors. Their recommendation was even though my GIST tumor has been resected and there is no indication of other growth, due to my cancer history and hiding location of previous GIST tumors that I should stay on Gleevec for life. So that is my plan.
It was very difficult working full time and dealing with my multiple health issues. I woke up every morning exhausted. On top of everything else I have sleep apnea and I DO use my CPAP machine faithfully but I still never felt rested. While working I best cope by allowing myself to sleep in as late as my body wanted on my days off from work. I was forced out of my job last year, I’m sure it was because I was at a doctor’s appointment every week along with cancer, I have major lumbar bone deterioration and neuropathy, and am in constant pain. Thankfully I was approved for social security disability and although there is a loss in income the best part of being home is that I have no set time that I have to be up in the morning which gives my body the rest that it needs – I think that is the key.
I found that less physical, emotional and mental stress is worth the loss of income, I just didn’t realize it until I was forced into that situation. I also have a phenomenal caretaker. My husband has been a police officer for 30 years and has chosen to take the midnight shift so he can accompany me in the day to my doctor appointments. He prepares dinner nightly before he goes to work. He goes shopping with me so I don’t have to push a heavy buggy and load and unload it by myself. He is my rock, gives me unconditional love, physical and emotional support and is my biggest cheerleader no matter how crappy I feel. I could not manage life without him.
My hobby if you can call it that is going to church on Sunday. This also helps me to cope. It feels good to get dressed up even though most wear jeans to church nowadays. Although I can no longer sing in the choir due to my vocal cord paralysis from the thyroid cancer, I am able to close my eyes sit back and enjoy listening to others sing. I sit with friends during Sunday School hour and share life events. I pray every day even if it is for only for a few minutes, it feels better when I talk to God. I find that walking is soothing, sometimes I might only have energy to walk up the driveway other times it might be a trip around the neighborhood, or around the parking lot with a coworker, but I have found fresh air and sunshine (or even the rain) feeds both the body and soul. I try to find new recipes and laugh at myself when they are a flop – which is probably why my husband does most of the cooking. When we can I love going out with my family and spend time listening to what is happening in their lives. My children always find ways to make me laugh and feel good about myself.
My advice is to get the rest you need, spend time with people who lift your spirit, let your caretaker take care of you, and even when the news is bad, remember that tomorrow will be better than today.
Motto/Quote to live by
I have two mottos that I reflect on the most.
“You can’t always choose the path that you walk in life, but you can always choose the manner in which you walk it. “(UKN)
Matthew 11:28 “Come to me, all who are tired from carrying heavy loads, and I will give you rest.”
– Theresa Rogers
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 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 a GIST/PRiME account
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Interested? Contact Denisse Montoya, LRG Patient Registry Director for more information: email@example.com