End-stage Carcinoid Cancer

Hi.  If you are reading this post you may either have been diagnosed with or suspect carcinoid, or have a family member or friend with carcinoid.  I have advanced carcinoid, so I will warn you now that what I am about to say may not be encouraging to you.  This is about my journey through end-stage carcinoid.  I am sharing this because I don't read much about end-stage carcinoid and I just thought maybe others would may be interested to know and maybe share also.

I am giving myself this label now:  end-stage carcinoid, and now I tell people I have terminal cancer.  Since I was diagnosed in May 2006, I would say I am a carcinoid survivor, or that "I have" carcinoid cancer.  Now, I am making my own distinction based on what I am hearing from my doctors.  Believe me, they candy coat everything so this is my own doing.  I just need to know where I am in the process so I can figure it out the best I can.

I just got back from my 3rd PRRT in Bad Berka, Germany last week.  The incredible Dr. Baum, God bless him, showed me my new GA68 scans.  The good news:  my disease in considered "stable/remission" according to Germany's standards of measuring things.  That means no new tumors, and the tumors I have all show decreased "uptake" and even the huge liver tumor is necrosing, or dying.

The truth about my disease status:  my liver is huge.  The normal-sized liver is protected by the rib cage and ends at the bottom right rib.  My liver has grown all the way down to my right hip.  My whole liver shows "uptake" which means that my whole liver is full of tumors.  I asked Dr. Baum: what is my prognosis?   Something US doctors won't answer directly.  Dr. Baum told me that my liver is critical and that if I had not gone for PRRT last year I would probably not be here now.  Since my liver is all full of tumors, he said there is no liver resection possible for me.  Only possibly a liver transplant and that they have done 4 at his hospital for carcinoids.  He asked me if I have a sibling that might give me a half liver.  Since my sister stopped talking to me when I got diagnosed with cancer, I really don't have a sister.  Dr. Baum told me I would probably die waiting for a liver, since I'm not Steve Jobs, so there is basically nothing left for me but to live my life while waiting for my liver to fail.

Meanwhile, he did say it may be possible to continue PRRT treatments.  The problem is we are out of money and this treatment is not available in the USA.   My husband's employer, by some miracle of God, paid for my 3rd PRRT but I cannot expect they will pay for another.  

As my disease has progressed I talk more with others who, like me, have advanced carcinoid, I am learning that  so many of my recent ailments are carcinoid-related.  The migraines, heart palpitations, the high/low blood pressure variations, the extreme fatigue.  This on top of all the other carcinoid syndrome symptoms that I have been trying to manage for the past 4 years.  As my disease progresses, I can expect to have more illness, sometimes severe and then getting better, until one time I won't get better.  We just won't know which time that will be.

Dr. Baum told me that a person with a liver like mine is like a 20 year old strapping young man with hepatitis C.   The fatigue from the sick liver can be completely debilitating.   My liver functions are still normal, but my liver enzymes are always elevated.  I am afraid of how I will die and I am afraid of suffering.  I do not fear the death itself, just the getting there part.

What can I say?  I am half Slovak and half Siciliana and inherited the traits: "strong like an ox" and "stubborn as a mule".  My mother's motto was "Never, never, never give up"  I think it was a quote from Winston Churchill.  My family jokes is that it would have been better if she had given up sometimes.  Oh how I understand that!

So, I am reading several books to help me through transitions as my carcinoid cancer progresses.   One great book I am reading is called "Handbook for Mortals".  I am learning about the concept of "living with cancer" and "dying of cancer" and that my special transition time can be one of the most meaningful and productive times of my life in so many ways.  This book is helping to make sense of: a lot of hurt, confusion, fear, sadness, and the feeling that  I don't know how to do this dying thing.  The book says, hey - you figured out so many things in your life that you didn't know how to do - you'll figure this one out, too.  I believe that, though it may not be easy.

Because of my caregiver situation, I will need to write down and make as many choices as possible before I cannot do these things myself, like: What hospice do I want to use?  Where do I want to die?  What kind of end-of-life care do I want?  And, how to make all the arrangements for these and so many other things and put them in a book for my husband to follow.

My husband is working full-time, and caring for me and my 2 sons, ages 10 and 15. 

There are so many "letting gos" with cancer.  Each one has to be recognized, grieved, and let go of as I move on to others.  As an engineer, I always envisioned myself working. In 2006, I had to let go of work and all that went along with that: productivity, meaning, identity, friends, and money.  

More recent "letting gos" - that I can't care for my kids or my husband many times.  I can't figure out how to help them or actually help them when I desperately want to.  I have to let go, and be thankful for the things that I can still do for them and myself each day.  

So my plan now is to live in the moment, choose to focus on the good things in life as much as I can, do what I can when I am feeling well, spend time with friends and try to reach out to my fellow noids as much as I can in the time I have left.

If you would like to post a comment, or reply to me in private that would be awesome.

Peace,

Andrea