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.

Surgery Rescheduled–Asking for Your Thoughts and Prayers

Last Friday, I learned from the Madigan medical system that they would not refer me out to UW Medical Center for the surgery.  There is much more to this situation that I can write about for now, as I’ve contacted an attorney.  What I need now is an abundance of positive thoughts, prayers, good feelings, love, joy and laughter that I can receive.

I have an amazing circle of people in my life, including friends, family, acquaintances, workshop participants, doctors, etc. who have shown me so much support, love, and encouragement in the past several weeks.  Some of these people have also been total strangers.  I’m very fortunate, indeed.

So, now we begin the road to learning to live with this disease called, “Carcinoid Syndrome.”  We start by getting rid of the culprit.  On Thursday, I am scheduled to have an ileocecectomy, which is a partial resection of my small intestine where the primary tumor is likely located and removal of the cecum in the colon.  They will reattach the intestine to the ascending colon.  The surgeons will also remove the lymph nodes that have metastatic disease.  They will also remove lesions in the left lobe of the liver and leave the right side alone for now, until I have recovered and we can see what the cells will be doing once the primary tumor is removed.

I am confident in abilities of the UW medical team.  I am confident in my support system outside of the medical team.  I am encouraged by all those who have rallied around me as I prepare for this fight.

I will be in the hospital for about a week before I’m released to go home to recover.  I look forward to seeing some of you in the hospital and in the weeks to follow.

Just remember, I will probably not be able to entertain you.  This is when I get to let you have center stage.

Please don’t get too used to it, though.  I’m planning on being back to my normal and ornery self  sooner than later! 😉

A Quick Update–Surgery Cancelled

UPDATE–

Surgical resection of the right lobe of my liver scheduled for this morning at the local military hospital was cancelled.  I called the surgeon last week to cancel it.

I sought out a second and third opinion from Seattle Cancer Care Alliance and University of Washington Medical Center Liver Tumor specialists.  The treatment protocol suggested by these two doctors was quite different than that of the military surgeon.

I decided that I wanted to pursue treatment at UWMC, which was a less radical surgery on the liver.   They also considered other options as far as the genesis of this cancer.  Each of the two doctors with whom I consulted feel that the primary tumor has originated in the ileum and NOT the mesentery, which was not even suggested by the original doctor.  This is based upon their expertise, having specialized in gastrointestinal cancers.

Surgery was approved through Triwest for the procedures to be covered outside of the military system.  However, this approval was rescinded after the military surgeon went to Triwest and complained that he did not authorize this approval, after I shared with him that I was more comfortable with these other two doctors and their suggestions.

It is important to note, as well, that the original doctor painted a much bleaker picture for a hopeful prognosis.  I held little hope for much of a future, based on how things have been presented to me.  Even if it may be truth/reality, these other two doctors have given me more “light” for a longer and more hopeful future.

For many reasons, I felt that I could not talk to the original doctor.  I had tried, but to little avail, as I tried to discuss the other options and was shut down.  I did not want to get upset with him, as his reactions seemed to be ego-driven.

I did not want MY ego to get the best of me (and it can), so I went to the Patient Advocacy office for help.  He stated to my advocate that he will not refer out under any circumstance, claiming that he can perform the surgery as the specialists will.  I have declined his offer, as my confidence in the system and this particular doctor has bottomed-out.  In a word, this has gotten quite “messy.”

The advocate has presented the case to higher authority in the system and I am awaiting the decision.  I hope that it is favorable for going outside the military system and into the UW Medical system.  I just want to get back to some semblance of health and wellness and on the road to recovery. I want to concentrate SOLELY on getting the best care for me, and stay positive in this experience as I face this fight of my life.

Thanks to all for your support, thoughts and prayers. I will keep you posted, and will fill-in the details when all has been sorted out.