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 at our Rare 13 site.
Our Patient of the Month for August is Debi Granus. Here is her story:
I was on a business trip to Chicago in January of 2015 when the big symptoms started. I couldn’t pick up my luggage to put it into an overhead bin because of the intense pain in my right side. I’d been nauseous the past few days and this dull pain had become incapacitating. The hour and a half drive home from the Philadelphia airport seemed unending!
I’ve spent most of my career in healthcare, primarily in the laboratory diagnostics area as a lab tech, corporate field troubleshooter, instructor and manager. I’d already diagnosed myself as having a gall bladder attack. Imagine my surprise at two in the morning to hear the Emergency Department doctor tell me I had some “type of cancer”, more tests were needed and I was being admitted. After a ten day stay, I was discharged with an undetermined cancer until the phone rang and I learned about “GIST”. I had to write out the entire diagnosis – gastrointestinal stromal tumor, Stage 4, inoperable. And the journey began.
I learned later that my slides were sent to Fox Chase Cancer Center for diagnosis and although I began my care elsewhere, I am now a patient at FCCC. I’ve had about two and a half years on Gleevec/Imatinib before failing last August.
The first year, I was determined to return to work. I lasted ten weeks due to fatigue and pain. Long term disability became part of my life as I struggled to find a “new normal”, a new meaning for getting out of bed and an unending search for why me. I was an active exerciser, golfer, tennis player and runner. I ate all the correct foods and watched my weight. Why me?
The second year called for two liver embolizations to try to slow down the growth while on Gleevec. These procedures helped, however the first one sent me to a very dark place as I tried to heal. I prepared for the second procedure with more information and self-advocacy. I insisted on an extended stay post-procedure. I spoke to the Interventional Radiologist directly about pain. I set up home health visits and home physical therapy. I wanted to avoid being in the “dark place” again where every day was a struggle to have a little hope. And these steps all helped me to heal faster from the second procedure.
I was devastated during my oncology visit in August 2017 to learn about the regrowth in my liver mets and primary gastric tumor. I had worked so hard at PT, I’d come back, I had a wonderful summer, I was golfing again and was looking forward to a Cancun vacation in September. I was informed there was a clinical trial I was eligible for, but the timing had slipped through the summer.
On faith alone, I decided to wait for the clinical trial to open, whenever it might happen.
I’ve been on the Deciphera Pharmaceutical DCC 2618 trial now for 11 cycles. The trial opened at Fox Chase Cancer Center on October 1st and I was there that week to sign consent forms. In two months, the liver mets had virtually disappeared, and the gastric tumor was silent! After dose adjustments, a few setbacks, and finally a 100 mg dose, I’m mostly stable and continue the Phase 1 expansion trial.
We each know everybody has a unique journey with this disease. Unfortunately for me, the trial drug has primary side effects of cramping and fatigue. Again, I searched for another “new normal” and yet I was so worn out of this daily fight. So what has helped me?
First, and foremost, spiritual faith. I believe this disease was put upon me to stop, slow down, listen, enjoy each day with gratitude, and to return to my youthful roots of my religion, which I’d abandoned. Every day I make time to pray, meditate, read scripture, and be grateful for what I do have. I am learning to not worry about what I cannot control about this disease’s impact on my life and the healthfulness lost. I focus on the goodness of each day and the hope of tomorrow.
Second, I worked to develop a stronger social network, face-to-face and through technology. Daily feelings of isolation for us can be overwhelming. I joined a monthly cancer support group. I tightened my close circle of friends and relatives through more phone calls, visits, and old-fashioned letters. I have benefitted from the Life Raft Group support of its website and listserv emails. I joined Facebook sites for GIST and sarcoma to connect with other patients. I bet you and I may have already crossed paths electronically!
Third, I continue to educate myself about our disease. We must stay open to changes and benefits the research brings to us. Even in my short almost four years, there has been so much progress! Staying up- to-date brings multiple benefits, especially the ability for self-advocacy. I know I would not be on this trial if it were not for my ability for self-advocacy, right from the beginning.
In summary, my experiences allow me to recommend:
- Don’t be shy about getting second opinions and working with your entire healthcare team that should include educational, financial, and social resources.
- Use technology. Search your local home area for additional resources like Meals on Wheels, exercise programs for cancer patients, and support groups.
- Define your new sense of purpose, identity, and priorities. Re-examine your personal spirituality through worship, meditation, and gratefulness for small things.
- Set small attainable goals for yourself every day. Change them up. Completing small goals makes you feel fulfilled, accomplished, satisfied and happier.
- Reach out. Learn to ask for help and accept help from others. It makes the daily journey easier.
My motto is, and has been for over three years now, “one day at a time”. Thank you for allowing me to share part of my journey with you. I hope this makes yours a little more hopeful.
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