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 December is Wanda Sebestin. Here is her story:
My name is Wanda and I am living with GIST. I live in a very small town in the Upper Peninsula of Michigan. In the summer of 2013, I was jogging, and I felt an unusual sharp pain at the top of my stomach when I took a deep breath. My small-town doctor got me in quickly and after being sent for multiple scans, I got a phone call. That phone call changed my life.
My doctor said that I had a “Huge Mass” (38 cm) in my pelvis, a very large tumor on the outside of my stomach and multiple, smaller tumors growing along a stock on my mesentery.* I was sent to see a brash, young surgeon at Marquette General Hospital in Marquette, Michigan.
You can say “Ignorance is Bliss” because I had no clue about the journey I was embarking on. As I sat in the small room waiting to see the surgeon, he walked in, looked at me and said: “Have you picked out your burial plot, yet”? I honestly replied: “Yes…pretty much”. He then said “You have GIST. I am going to take out all these tumors, get clear margins, take about 10% of your stomach. You will be in the hospital about 5 days, you are going to go home, take a pill, and you will live”.
He did. And I did. I was diagnosed with Stage IV GIST KIT Exon 11 (del 557/558).
When I came home after my original surgery in 2013, my husband went online and “googled” GIST. That is when we found out about The Life Raft Group. We reached out to them and they reached back. They are my lifeline. They dedicate themselves to helping those diagnosed with GIST. They help us understand and navigate this new world we live in. They help us make sense of our scans, pathology reports, lab numbers, mutation results, medicines & trials. How amazing is that? Because honestly, I don’t understand all I read about GIST. I don’t have the education, but they do. I don’t have to have all the answers, because I am a phone call away from someone who does. They have helped me, guided me, and held my hand when I have been at my lowest point. The Life Raft Group – They are my lifeline.
My husband of 38 years is my rock. He is my caregiver, my anchor, my best friend, my cheerleader. We enjoy traveling, going out for dinner, playing the “penny” machines at the local casino, having some laughs with friends over lunch or just sitting quietly and enjoying a good cup of coffee. We like to laugh and surround ourselves with people who bring us joy. I believe that exercise is so very vital to survival. I put on an MP-3 player with good music and I run. (not as fast as I would like), but I run. It is a great way to relieve stress. It forces me to breathe deep, open my lungs and get my blood circulating. I take B-12, potassium and magnesium supplements. It helps. Because I retain water with Gleevec, I take Lasix. I drink lots water. Because I am now on 800 mgs. Gleevec, I split the dose. 400 mgs. in the morning and 400 mgs. at night. I make sure to eat something before my pill. I have found (the hard way) that I am able to tolerate my pill if I take it in the morning with a toasted peanut butter sandwich. My stomach likes this. In the evening, for dinner, I make sure to include mashed potatoes, rice, or macaroni and cheese. Then after dinner, I take my pill. I have found that eating anything with a tomato base causes me a problem and so I avoid spaghetti sauce made with tomatoes or chili. I make sure to drink lots of water after taking my pill. Sometimes, I find that drinking a Coke helps relieve stomach gas.
Fast forward to 2018: I have since had two more procedures. In 2015, I had one rogue tumor to my liver surgically removed successfully with a desmoid tumor (Exon 11) and in October 2018, I had a successful ablation for one small tumor at the dome of my liver. I also found out I had a secondary mutation (KIT Exon 17 Y823D). My MRI scan in December 2018 – all clear.
Coping with GIST:
Physically, I see my oncologist and get my bloodwork and MRI scans every 3 months. I also see my primary care physician every 6 months. I get a flu shot every year. I also have gotten my shingle vaccine for 2018. I make sure to exercise every other day. I walk/jog/run/bike whatever I can do to keep my body healthy and my blood circulating. I sleep 8 hours a night. I make sure to eat 3 light meals a day. I take Gleevec 800 mgs. a day and I do not miss a dose. I hydrate by drinking plenty of water each day. I see my dentist each year for cleanings. I stay as physically strong as I can. I do this because I do not know when I may need a surgical procedure. I do not know “if” or “when” my cancer will mutate, but “if” it does, I want to be physically ready to stand up to whatever comes my way.
Mentally, I try not to dwell on the negative. I am not “brave”. I do not have a choice, cancer picked me, I did not pick cancer. But cancer picked a fight with me and I will do whatever it takes to stay in this fight while I wait for a cure. Does it overwhelm me at times? Absolutely. There are times when I go to my knees and have a good cry. Then, I pick myself up and tell myself how lucky I am. “Lucky” you may say? Yes, “lucky”. Because you see, I watched my only brother die of a very rare cancer in 1984. He was 34. His cancer went through him so very quickly. Within 6 months of diagnosis and multiple chemotherapies and treatments, he died. I loved him with all my heart and watched him suffer before my eyes. So, when I say I am “lucky”, I am. Because I can take a “pill”. I can take a little yellow pill that will help me live. And, if that pill doesn’t work, I can try another and another after that. So, yes, I am lucky.
Advice to fellow GISTers:
My advice to others is surround yourselves with healthcare providers that care about you. Always take someone in the room with you when seeing your doctor. Write down your questions beforehand. Speak up. If you don’t understand what your doctor is saying, ask him to explain it in terms you do understand. Get copies of everything and keep records of all scans, lab works and pathology reports. Learn as much as you can. Be your own advocate. REACH OUT…People are amazing, and they will help you. But you have to ask. And last, be good to yourself. Give yourself a break. If you are tired, take a nap. If you are too tired to cook, order out or let someone else cook. Give yourself a break, you deserve it. And of course, see a GIST specialist and join The Life Raft Group.
Hobbies you enjoy:
I like to bake cookies, plant flowers and read. I LOVE dogs, travel and meeting people.
Motto you live by:
Speak up, reach out, stand up.
“Hope springs eternal in the human breast”
*mesentery – a fold of the peritoneum that attaches the stomach, small intestine, pancreas, spleen, and other organs to the posterior wall of the abdomen.
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: firstname.lastname@example.org