For more than two months now, I’ve been dealing with the knowledge that I have something very serious going on inside of me, after an emergency room visit in April. From there I was sent on a journey of scans, a biopsy, tests and a crash course in medical terminology that would rival cramming for any university exam.
On May 15th, it was given a name: “Stage IV Gastrointestinal Carcinoid Syndrome, which has metastasized to the liver.”
The picture painted by the Army surgeon was rather bleak. I was told that the primary cancer was a mesenteric mass and the liver was nearly completely riddled with cancer. Do nothing, and I likely had a year or year and a half. Or he could aggressively remove this mesenteric tumor and most of my liver to double my time, though, “there is a 70% chance this will return within a year.” We set a surgery date for the 11th of June.
The next two weeks were pure hell. I started preparing for my death. It was the lowest point of my life. After all, the doctor was the expert, right?
Thankfully, I had the wherewithal to ask for a second opinion with my former surgical oncologist at Seattle Cancer Care Alliance, who referred me to the liver tumor specialist at University of WA Medical Center (UWMC) just a few days later. I questioned the “either-or” approach. And for the first time in over two weeks, and with only a week before I was to have the original surgery, there was a flicker of hope, with a much different treatment protocol suggested. But as I have just a few hours before I need to get up and on my way to UWMC, I’ll save the longer story for a later telling.
It’s been nine and half weeks since symptoms began which prompted me to go to the ER. It took time for all the tests. What I never counted on was a fight with a surgeon whose ego got the best of him, being unwilling to accept that I would question his methodology by going to a facility which specializes in cancer research and treatment.
His decision to rescind an authorization in place for surgical treatment was spiteful, at best, and destroyed any modicum of trust I had in his judgement. Even after getting the advocacy department involved, the decision was made last Friday that there would be no referral outside of the Army system, and I was given no other options than to allow this one particular Lieutenant Colonel to operate. Never was there a point where my wants were considered.
I went with my “gut.” I went with what I knew was right for me. I knew that doing so might come with a consequence of having to pay out-of-pocket to do so, because my hand was forced by this doctor. But I was willing to do what was necessary to get the care that was best for me. Thankfully, I have been able to switch to a different type of insurance offered, so the out-of-pocket cost will have a catastrophic cap.
In a few hours, I will be leaving home to entrust my life to the hands of a skillful surgeon at UWMC whom I trust and who has shown me compassion throughout this ordeal with the challenges faced by the system at the military hospital. He has a sense of humanity and decency. He has a heart and considers me a partner in this process.
And I have been given choices. Each of these choices is based upon possibilities. Possibilities for future that could very well reach beyond the next couple of years.
Yes, I have Stage IV Gastrointestinal Carcinoid Syndrome. Living with this diagnosis will certainly be a challenge.
But I have hope. And I have a medical team, which has my best interest at heart. I also have an incredible support system of friends and family that spans the globe who have committed to love and encourage me as I take on this fight.
May I continue to see beyond what is immediately in front of me. May I always remember that people are watching me live in the face of what is to come.
And may I always remember that my purpose has been set in this life–to inspire others to see beyond the challenges they face in this lifetime.
I pray that I can accept and face this challenge gracefully.