Beyond the Challenge of a Carcinoid Tumor

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.


21 thoughts on “Beyond the Challenge of a Carcinoid Tumor

  1. I pray for you, the peace of healing, and the strength of the Lord who will carry you through this. I pray for your family and friends, whose love and support will bolster you. I pray for your doctor and his team, that their hands may be guided to your best outcome.

    You are not alone today, as I go with you in spirit.

  2. Denise

    Love ya gal. Will keep you in my prayers and thoughts always. If it can be done you can do it. Your strong and strong willed.

  3. Shaking my head, wiping a few tears away, and stunned at the ever-increasing strength and relevance of your personal mission, Coral. Indeed, it has already been fulfilled – many times over. Holding you (and your whole team) in my heart this day. xoxo

  4. Nicole La Gala

    Kick its a**, Coral!~ This is just one of many other things that I know you have the strength to do. I will be thinking about you today, and hoping for an update. Much love to you!

  5. Dave Rasmussen

    Sitting in the Rainier Inn, teaching a class at North Fort Lewis that probably would have been yours, and thinking that some people will do almost anything to get out of teaching a class in this heat! Seriously, Coral, it sounds like you have a lot better handle on this than the first week we met. Judy and I are so happy to hear that there’s an alternative. Judy’s one to defy the medical “authorities” too, so she’s doubly happy. Please let us know when you’re back out and able say, “I told you so!” to your original doctor.
    Best wishes for a continued recovery,
    Dave and Judy Rasmussen

  6. Mick

    I read your updates on blackberry while in the south of France, but could’nt reply from there. I remembered you on the morning of your surgery, and I hope you’re doing okay in the post-op period.

  7. Amanda

    You have been in my thoughts. I’ve been reading your entries and emails. You have always been strong and known how to follow your gut. In medicine more than anywhere else you have to be your own advocate and you have shown us all how its done. I have too many words competing to spill onto this page — all speaking to your strengths, your fight, your hope. Most, I wish and hope for you that you have exactly what you need in each moment. Love & Hugs. Amanda Feller

    1. Thank you, Amanda, for your kind words. They came at a time needed most. I have been remiss in writing updates. I vacillate on wanting to continue to tell this story–my story–and to stick my head in the sand. The sand has been winning lately. It’s time I continue to speak my truth. Hugs, Coral

  8. Pingback: One Year Ago Tonight… | Beyond Life's Challenges

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