My GIST Journey
In early December 2008, I acknowledged that my stomach was not feeling normal. I felt better when I skipped meals and instinctively knew something was seriously wrong. I met with my physician who ordered a CT scan. The following morning, he called with the news that the scan detected a “mass” on, or possibly in, my stomach wall.
For a month I threaded my way through a medical system that didn’t know what to do with me. I had no answers, just panic that the mass could be growing. After prodding from family, I called admissions at The Mayo Clinic in Rochester, Minnesota, and was able to schedule an appointment that same day. Although it was 75 degrees in Arizona, where I was living at the time, and 20 below in Minnesota, we hopped on a plane the next morning to Minneapolis then drove the one and a half hour trip to Rochester and began my experience with the amazing Mayo Clinic system. Within two days, I had a diagnosis and on the third day I had surgery. The tumor was a sarcoma attached to the upper left quadrant of my stomach wall. The surgery was done laparoscopically, and my tumor was removed with clean margins. After a couple of days I was sent back to Arizona to see if I could find an oncologist who treated GIST.
The oncologist I found had never treated GIST, but understood the protocol and had previous experience with Gleevec. I was prescribed 400 mg of Gleevec and within two months was taken off the drug because of the adverse reaction to my liver. A month off and then my dosage was reduced to 200 mg per day for the balance of a year. (Side effects of the medicine are another story.)
Finding The Life Raft Group was critical to my physical and emotional healing. As everyone who experiences this frightening cancer learns, guidance on navigating the medical system, help with paying for Gleevec and the support of the Life Raft team and ListServ is significant. From 2009 through 2013 I continued with regular scans and the results continued to be NED (No Evidence of Disease)!
Life After NED
My husband was diagnosed with Parkinson’s disease and as is often the case with caretakers, we stop taking care of ourselves. I put GIST out of my mind, believing in a fantasy that I was ‘cured’ and stopped seeing an oncologist and doing yearly scans.
My husband died in 2014, and in 2015 I moved back to the Minneapolis area to build a new life near family and old friends. I settled into my new life and was able to follow many of my interests, one of which was to become a Spiritual Director. In the fall of 2017, at 80 years young, I enrolled in school. It was a dream come true, fulfilling, challenging, and exciting. I think of school as plasma for my soul.
In early 2018 I was experiencing digestive issues. I read about leaky gut, tried acupuncture, met with a naturopath, and then realized I better doctor up and request a CT scan. A couple of days after the scan, my internist called, his voice low and shaky. He asked me how I knew that I needed a scan and I said, “intuition”. He continued, “there are three tumors growing together in exactly the same spot, the upper left quadrant of the stomach wall, but they are considerably larger than the one from 2009.” He contacted the oncology department at the hospital and I met with my new oncologist a few days later.
She brought up the scan on her computer screen and explained that the tumors were pushing my stomach over to my right side and were also up against my left lung and pancreas. She also explained that I had few options. The first was Gleevec, which I declined because of my previous experience at 400 mg and concerns about cost. She did not press the issue. Surgery was out of the question for a number of reasons including the fact that I would probably not survive. What was offered was a drug trial – immunotherapy.
In a state of numbness and shock, I agreed to participate in the trial. A few days later I was infused with two drugs, Opdivo/Nivolumab and Yervoy/Ipilimumab. The drug trial’s expectation was that these drugs would target the tumors and shrink them, which it did not. What it did though was target my healthy immune system and caused microscopic colitis. For almost three months I had uncontrollable extreme diarrhea. I stopped eating and drinking in an attempt to control what was unstoppable. I lost over 15 pounds, which I could not afford. After a couple of weeks going to the hospital every day for IV fluids the doctor said I needed to be hospitalized. Meanwhile the tumors were slowly growing.
In May I told my classmates and teachers that I would not return in the fall because I was dying. I received such an outpouring of love and support, it was sad and at the same time, uplifting. In July my oncologist said I had probably four to six months to live and she recommended that I needed a palliative team and should go on Hospice, to which I agreed.
Because my stomach was so compromised by the tumors, I was only able to eat very small amounts of soft foods; otherwise I had increasing pain and bouts of vomiting.
I reviewed my will and my last wishes, shredded some files, closed credit card accounts, had lots of talks with my children, and signed the DNR which was then taped to the refrigerator. Hospice began their visits, which was comforting.
I have deeply held spiritual beliefs, one of which is that death may be the end of life as Eve, but my soul is eternal. This helped me to move into a peaceful acceptance that I was dying. I felt deep compassion for my family and dear friends who were grieving this news. At the same time, I acknowledged that the world is full of suffering and mine is no more important than it is for anyone else. It can be a teachable moment. I vowed that I would handle my last months with as much grace as possible.
Except for GIST, I’ve been a healthy, active person, I’m curious, love learning, and write for fun, love beading, read anything and everything including recipes. I love to cook and spend quality time with my friends sharing deep conversations about the meaning of life. I’ve lived a life that has held joy, love and tragedy – all material for learning, in an attempt to understand the ‘why’ of some of the events in our lives. Living into the questions, facing our shadows, becoming authentic, these are my passions but also led me to my only question directed to God – why now? I’ve finally become the person I knew was buried deep within. I recognize that I am now what is called a ‘wise elder’ and planned to share my hard-earned wisdom, experience and love in Spiritual Direction. But now you are telling me “never mind”. It felt wrong, but I assume every human when faced with death has a similar question.
One Saturday evening in mid-August I was clicking through hundreds of emails, deleting most without reading them when I was drawn to one from “The Guardian”. It was a science issue, which I decided to open and read. The seventh article down the list was headed by the statement, “Since ablation is so successful at killing Sarcoma tumors, why isn’t it used more often?” You can’t imagine the shock that went through my body. Further, the article quoted at length a radiologist who is a professor and physician at Mayo Clinic in Rochester, Minnesota. I read the article over at least three or four times and then went online, found an application for an appointment, found my patient number in my records from 2009 and sent it off. I couldn’t sleep the entire weekend and first thing Monday morning called Mayo directly. I had a conversation with admissions, then was transferred to oncology for another round of questions and was told that my request would be submitted to a team of doctors and I would receive a call back no later than Friday. The next day I received a call from scheduling!
Five days later my eldest daughter who lives in Minneapolis, a close friend and I drove to Rochester. After labs, and a scan, a few hours later I met with a team of sarcoma specialists, a department that Mayo did not have in 2009. The physician who took the lead in our meeting was Dr. Steven Robinson. The news I didn’t like so much was that ablation would not work because of the location of my tumors; the process would cause serious damage to surrounding organs. Then the suggestion that I knew was coming. Gleevec!
Dr. Robinson said, “Eve, I know you had a bad experience with Gleevec. I’m asking you to take a deep breath and hear me out. Although 400 mg was the prescribed dosage from Novartis, we now know that much less is still effective. Also, you need to know that Gleevec is a silver bullet for KIT gene, exon 11 tumors. We will shrink these tumors down, hopefully kill them off, and we should be able do this at 100 mg per day. Further, the oncology department secretary will help you with the application for financial aid from Novartis for Gleevec.” Hope, disbelief, shock and tears, we were stunned hearing that maybe, I/ Mom/Dear Friend is not dying after all, at least not yet.
Reaching out to The LRG
As mentioned earlier, I had lost touch with The LRG once I started taking care of my husband, but after my meeting with the Mayo Clinic, and being a bit hesitant going back on Gleevec, I decided to pick up the phone and call The LRG to see what their thoughts on going back on Gleevec were. Sebbi picked up the phone and I explained the situation to her. She comforted me and assured me that The LRG would work with me and the sarcoma team at Mayo to try to find the best possible game plan. That’s exactly what they did. Sebbi had a call with Dr. Robinson and they discussed Gleevec and my concerns about going back on it but thought of ways to manage the adverse reaction with my liver. She made sure to fill me in on any conversations she had with the Mayo Clinic and even Novartis when I was having trouble getting financial aid for Gleevec. It was such a process, but Sebbi made me comfortable and helped me through the journey.
A Gift of Life
The following week I received my first month’s pills, of course I transferred my care to Mayo and gently fired Hospice. The social worker from Hospice came to my apartment for me to sign the necessary paperwork, we had a wonderful conversation, and she was so happy for me. “It’s quite unusual,” she said, “People usually leave hospice feet first and you are walking out on your own.” I couldn’t believe it myself. I truly believe that without picking up the phone and calling The Life Raft Group, I’d be leaving hospice as the social worker said – feet first.
At the end of August, I sent the following email to my fellow students and teachers: “Time for an update – I decided not to die! Short version – went to Mayo Clinic, found out there is a medicine that shrinks tumors, had outpouring support and guidance from The Life Raft Group, and transferred my care to the sarcoma team at Mayo. Decided to choose joy and gratitude for life and that includes all you guys. So, I am back! See you in September. Much love, thanks for all your messages of love and support, Eve”
I’ve been on Gleevec for over two months, and although I won’t have a scan until December*, I know the tumors are shrinking because I can eat, though carefully, without problems. The side effects of Gleevec are minimal and I think my system is adapting to its presence.
A friend recently commented, “Eve, you really had a near death experience.” Yes, that’s true. This past year has brought me a miracle and has been full of challenge, learning, pain and love. I now live “closer to the bone”. I think both death and life live side by side in me. I can tear up over almost anything. I feel passionate about life, grateful that we have freedom to choose how to be in this world, and that everything, no matter how painful, holds a lesson and a gift.
One of my favorite quotes is from Leonard Cohen, the poet and songwriter. “There is a crack in everything, it’s the crack that lets the light in.”
– Blessings, Eve Evidon
*Eve’s December CT scan showed shrinkage of her tumors.