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 June is John Garuti Jr. Here is his story:
John Garuti Jr., Florida, USA
My name is John Garuti Jr. I am retired and have been living in Naples, FL the past four years. In April of 2019, just after I turned 67, I experienced a slight stomachache that came and went for a few days until the day came when it would not abate. I figured I would go to my doctor but instead my wife of 37 years demanded I go to the emergency room at the local hospital. After a quick physical check and a CT scan, the ER doctor explained that I had two large masses in my liver, handed me the card of a nearby oncologist, and wished me luck. I was completely surprised. I was someone who always attended to my health, never missed a doctor appointment, reviewed my regular blood work results, etc. I was completely (cancer) asymptomatic; I later learned this is not uncommon.
Upon review the oncologist informed me that I did not have liver cancer and remarked that the primary cause of the cancer needed to be found. In the following days I received a PET scan and a liver biopsy. The results led the oncologist to believe that I had a GIST, a sarcoma. He insisted I see a sarcoma expert and so my next stop was Moffitt Cancer Hospital in Tampa, FL where I met my current oncologist who has “sarcoma” credentials. She immediately placed me on 400 mg of imatinib daily. It was the first day of May 2019, and she scheduled me for follow-up CT scans every three months. The primary cancer was determined to be in my stomach, but I also have metastatic liver.
Coping with GIST
I’ve have done incredibly well on Imatinib with no side effects and no activity or diet restrictions except to avoid grapefruit, which I never ate anyway. After 11 months on imatinib my stomach tumor shrank well over 50% as did my liver tumors, though not as dramatically, and so they recommended abdominal surgery to remove the stomach GIST. That was accomplished on Monday April 27th, 2020 and on Friday afternoon, May 1st, I walked out of the hospital under my own power and returned home to begin my convalescence.
My surgical pathology report addressed everyone’s question, “Did they get it all?” Yes, they did. In medical jargon it is called “NEGATIVE MARGINS”. So, things are looking up. Of course, I still have to deal with my liver. That will be addressed in July, at the time of my next scan when I will meet for a consult with an Interventional Radiologist. At this time, my liver is stable so there is nothing to do unless things change. There are additional drugs, like Imatinib which should help me and hopefully, should I have to turn to them, I will be able to tolerate them as easily as I did the Imatinib. When you have cancer, you have to learn how to live with uncertainty. I sleep just fine at night, unless my dog is snoring too loud. She sleeps alongside.
Advice for Fellow GISTers
My advice is…You must be your own health advocate. When dealing with doctors remember they are human and fallible. They have families of their own and other pressures – financial and otherwise – that they are dealing with and so are never completely yours regardless of how compassionate they may seem. They have many patients to deal with, each with their own set of issues and problems. And under the medical systems which exist in this country, like Medicare, they have precious little time to attend to you and you alone. So be considerate but be questioning and skeptical.
Make sure you understand what they are “really” saying to you and get additional opinions from other professionals as well. And digest all the reading material and literature you can understand about your specific condition. You must ADVOCATE FOR YOURSELF. I cannot emphasize that enough. It is the only way to get truthful answers. Provided that is, you want the truth. If you do not, I do not know what to say except that you will live a shorter life. And if that is what you want, it is your choice.
I enjoy traveling, have been thru 55 countries and 49 states, so I have more to go. I play a competitive game of golf and enjoy artistic endeavors that include acrylic painting and mosaic tile composition. Two grandkids and one on the way in the next two weeks is something to look forward to.
I borrowed a line from a Wille Nelson song, and I repeat it to myself every morning, “I woke up this morning and I am still not dead, AGAIN!” My plan is to keep saying that for as many days as I can.
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 Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: firstname.lastname@example.org