As a part of our Faces of Courage series, we are featuring a patient 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 Patient of the Month for September is Eric Lindberg. Here is his story:

GISTory

In the spring of 2017, I was sitting in a boat on a lake in the north woods of Canada on a fishing trip with my brother and father when I noticed pain and pressure in my tailbone area. The symptoms progressed all summer and I figured I must have a case of severe internal hemorrhoids (“Why do we call them hemorrhoids and not asteroids?” – George Carlin) and I finally went to see my doctor in August. After several weeks of tests and being told by my doctor after a colonoscopy that this is likely NOT cancer, I received a call from the GI specialist who had performed a needle biopsy.

It was August 22nd, the day after I had watched the total eclipse of August 2017 in the totality path, and he told me I have GIST in my rectum. He then told me to look up Gleevec online, as I would likely be taking it for a while. I started Gleevec right away with the hope that it would shrink the tumor, and it absolutely did. Several days after starting the drug, most of my discomfort and other symptoms subsided. It was working! Then, eight months later and significant shrinkage of the tumor, it was time to remove the remnants. After being told by a surgeon at the nearest tertiary hospital that I would need radical surgery with a colostomy bag, I decided to seek a second option.

The Life Raft Group was extremely helpful with this. I ended up with a successful resection at Memorial Sloan Kettering in NYC in April of 2018. A GIST specialist there then did extensive genetic testing on the tumor and then convinced my local oncologist that I needed adjuvant Gleevec after surgery, and this recommendation is for lifelong use of the drug.

Coping

I am extremely grateful for the real heroes of medicine: the scientists, researchers, and brave patients working in labs and participating in clinical trials to create the next weapon to fight cancer. Sometimes I can’t help but wonder what my life would be like if these TKIs were not discovered. I am working full time as an Emergency Room nurse and my medical background has been helpful at times when navigating through my GIST journey.

I recently became a GIST Peer support volunteer with the Life Raft Group, and I hope to pay it forward and help other GISTers navigate their way through their journeys. Now I can say that I relate to the often sappy testimonials you see in the waiting rooms of cancer centers where patients are telling others about their newfound zest for life. I am celebrating my 49th birthday this month, and they do mean a little more now.

Advice to Fellow GISTers

It is my opinion that all GIST patients should see a specialist. Your local oncologist, although familiar to you and probably caring, likely does not know how to manage this orphan disease. Also continue to educate yourselves and keep informed on the latest discovers being made in this exciting frontier of medicine that we are part of. For those on TKI therapy, simple things like eating cleanly and getting enough rest really do go a long way. The fatigue the medications can cause can be the most difficult thing to manage. Look at your energy like a bank account with a daily balance and allocate it wisely.

Hobbies You Enjoy

When I have free time, I enjoy being out in nature. I live in the Blue Ridge Mountains of North Carolina and immerse myself in their beauty whenever possible, whether it be backpacking into the wilderness to camp or paddling down a spirited river. I enjoy taking my 8-year-old daughter with me whenever possible. I have two older daughters, one who is a sophomore at the state university – she is spending a lot of time working in the research labs there; my oldest daughter is in her first year as a middle school music teacher. I also enjoy cooking, skateboarding, reading, and starting (key word) DIY projects on my home that I probably have no business doing.

My lovely wife, Ana (by the way, give your spouse/partner/caregiver a really big hug or chocolate after reading this, as they are a key component to your GIST journey) has put a moratorium on starting, or even finishing, any more projects, so now I can be in the woods more.

Motto to Live By

“A person should be willing to give up all his tomorrows for one today, so that he doesn’t end up wasting all his todays on one tomorrow.” – The Alter of Novadik

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

  1. Patient must be a member of the LRG Patient Registry
  2. Patient is an active member of the Patient Registry, continually providing medical updates
  3. Patient’s record should be at least 80% up-to-date
  4. Patient has a GIST/PRiME account
  5. Patient must agree to provide consent to share his/her story to our GIST community on our website and social media

Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: skaur@liferaftgroup.org

read more member stories