A year and a half after diagnosis

Today I received a wonderful phone call from the scheduler for my medical team at University of Washington Medical Center.  Not only does she keep on top of things so I do not forget to make the appointments, last being seen in December, but she is so darned nice.

When I look at the differences in how I feel today about my situation and what I was facing a year and a half ago, I would say that I am a different person completely.  Not in simply my feelings, but how I view life and those in it.

Although I recognize that how I behave, think and feel has a major element of personal responsibility, it cannot be denied that I have reacted (not so well) to those who have presented information in regard to the diagnosis, prognosis, and treatment.

This morning when I wrote “Customer Service in Medical Profession”  I recognized that my initial fears were more elevated by HOW the information was shared, and then the fears skyrocketed after my initial surgeon responded by having my insurance approval rescinded, when I felt more comfortable with another doctor in a different medical system.  In the UW system, I encountered others who made me a partner in my care, rather than telling me what to do.  Nor were they hell-bent on “being right,” but presenting me with more options so that I had better knowledge to make informed decisions about my life and the care I was to receive.

One and a half years ago, I was a mess.  I would even go as far to say that even six months ago I was still “waiting for the ball to drop,” consumed by the fears of “what if” and “when.”

Although I know that carcinoid cancer is not going away, I am LIVING with it.

I am grateful for the words a friend spoke to me in the spring, saying:  “Coral, you are lucky to have an opportunity to view life from the existentialist’s point of view.  Some never get that chance.”  Those words changed my life.

I agree with philosopher Søren Kierkegaard in that I, as an individual, am entirely responsible to living my life genuinely, and with the passion that I deem is important to me.  This also means that I have to be honest with myself and make choices about the meaning of my life, regardless of what others may think about me or what they would do (think I should do) in the situation.

I am glad that I was willing to face the situation last year, and that I had the supporters I did (and do).  The people who have played each role have taught me so much, and each have had such impact as I move forward in this journey, facing whatever lies ahead.




2 thoughts on “A year and a half after diagnosis

  1. Very insightful comments. Are you now in remission? I agree so completely doctors and patients need to be a team presenting information and making choices, the days of the doctor saying do xyz with insight into your feelings on the matter ought to be gone.

    1. Hi Sandy, and thank you for stopping by and commenting. 🙂 Unfortunately, with carcinoid cancer, there is no “remission.” It is something that we all will live with, as it is systemic. Thankfully, it is slow growing, but the nature of the disease means that it is always there. There may be periods where they is no “evidence of disease.” In my situation (as with many of us who are “zebras”), my liver has quite the tumor burden, but it has not grown substantially in the past year and a half after diagnosis. I have no new detectable tumors, as there was the primary in my intestines that was surgically removed in June 2013. I will have my next MRI in January to see what has been going on since the last one in June.

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