NEUROENDOCRIN/CARCINOID CANCER

Carcinoid A rare form of "slow-growing" neuroendocrine cancer

Susan Anderson - An advocate for Carcinoid and Neuroendocrine Tumor Awareness

Eulogy for Susan
By
Howard C. Anderson

Howard is having someone else read this because he cannot read it aloud without crying uncontrollably and he wants you to be able to hear and understand what he wrote.

Susan and I met at a “Parents without Partners (PWP)” meeting in Columbia, Missouri. We only talked briefly at the meeting but, in her book, “Becoming Sunny Susan”, she says she thought I was “brilliant, shy and sensitive.” She had volunteered to be a “caller” for PWP so had the complete phone list. In her book; she says she did the unthinkable in those days: She called me to ask if I would attend an opera, “Tales of Hoffman”, with her on Friday the 13th in November 1970. I agreed and, during the opera, I thought wow, here I am for once with somebody intelligent and refined. Strangely, we only allowed ourselves one superstition and that was that 13 was a lucky number for us. Both our parents were married on the 13th and many other good things over the years had happened to me associated with the number 13. That was partly why I agreed to go with her to the opera instead of going to the PWP party that was planned for that night.

We had both been divorced only a month before we met. We were engaged on the 13th of December. A month and a half after we met we were married. Looking back, that was crazy and never should have worked. But amazingly it did.

We had planned to get married later than we did but I was finishing up my Master’s degree in Mathematics at the University of Missouri and, during the Christmas break, I finally had time to think and realized that we would lose $3,000 in income taxes if we didn’t get married before the end of the year. So we got wavers, scrambled around, found a judge on New Year’s Eve of 1970 and got married.

I graduated in early January. The Air Force assigned me to an intelligence organization at Strategic Command Headquarters in Omaha, Nebraska where we bought a home. Susan greatly enjoyed being able to play the roll of a normal housewife for the first time. (She had been working and supporting two kids and an alcoholic husband for 11 years before her divorce.) We lived in Omaha until I was reassigned to the Pentagon three years later in July of 1974.

Washington, D.C., was a very high cost area so most military wives worked. She worked for a while in a real estate office but then accepted a job with the Chief of Naval Operations in the Pentagon. She loved working in the Pentagon! She held several jobs there and eventually was the Administrative Assistant to the Director of Naval Intelligence, Covert Submarines, where she was granted a Top Secret clearance. She found the work extremely interesting and got to sit in and observe practice runs of classified mission briefings before they were given at the White House. She very much enjoyed the people she worked with. Two of them became book authors, P. T. Deutermann and Richard Marcinko who was the founder and first commander of Seal Team 6. He wrote the book “Rogue Warrior.”

I also had a Top Secret clearance and worked in a “vault” in the Pentagon where the door to our office area had a combination lock. Her clearances included additional intelligence level clearances so she could visit me in my office but I could not visit her in her office.

We had a little camper on a Dotson pickup truck and traveled up and down the East coast. One day in 1975 Susan said “Let’s go to the Harper’s Ferry Fiddle and Banjo Contest. That is what got me started on the banjo. Susan was totally supportive of my efforts to learn the banjo and to eventually buy a really good banjo. We joined the Capitol Area Bluegrass and Old Time Music Association and the Tri-State Bluegrass Association. Susan organized weekly Bluegrass jam sessions in our home in Virginia for several years.

We worked in the Pentagon for 9 years until I retired from the Air Force as a Major.

I was hired by Motorola and we moved out here to Arizona. We bought a great house that we both loved. Susan started a book discussion group since she loved reading and discussing books. She read literally thousands of books during her life. She accumulated vast amounts of knowledge from them.

She also started Bluegrass jam sessions in our house that were held every Wednesday night from 7 to 10 PM. She organized all of that. I just played music. Without her, none of the jam sessions would have occurred.

In May of 1995, after 8 years of occasional vomiting, severe abdominal pain and finally weight loss of 62 pounds, she was diagnosed with Carcinoid cancer. It is slow growing and incurable. When I heard the diagnosis, I cried but when I went to her room I found she was very happy. She finally had a diagnosis and could now devote her efforts to studying and overcoming the problem. She threw herself into working for her survival.

Estimates at that time said she would have only 2 to 3 years to live. She researched the internet, found the world’s leading Carcinoid doctor in New York, Dr. Warner, and flew there to consult with him. He was her hero. He is why she lived an additional 22 years. He had discovered that Sandostatin alleviated symptoms and it was later found that it also prevented tumor growth. Sandostatin is what kept Susan alive for so many years.

Susan created her web site, http://www.carcinoidinfo.info, and put everything she had learned about Carcinoid out there to help people all around the world. She included many items on how to live a full life with Carcinoid including pictures from all of the trips we took. Carcinoid patients around the world benefited from her web pages and she answered thousands of Email messages from other patients, particularly the newly diagnosed who were frightened. She helped them overcome their fears.

Susan also survived breast cancer. She had a liver resection for Carcinoid. Many times over the years I cried when I thought I would lose her but she always overcame everything.

In 2013, Susan published her book “Becoming Sunny Susan.” It is available on Amazon.com on the internet. It is essentially her life story. Also in 2013, Susan published “Pioneers Past and Present: A Family History” which includes further details of our lives, her parents lives, etc. It is also available on the internet via Amazon.com.

On 2 June 2017, Susan suddenly became incoherent and I feared that she might have had a stroke. Instead, it was a simple Urinary Tract Infection which, I have learned since, often causes older people to become incoherent. She was treated for a couple of days in the hospital then released. Then the next day, 6 June, her legs collapsed and she returned to the hospital. She was diagnosed with C. Diff. a bacterial infection of the gastrointestinal tract that causes unrelenting diarrhea. C. Diff. is extremely difficult to cure. We tried everything. Two fecal transplants, Vancomycin, etc. Hospital, rehab facility, hospital, home, hospital, rehab facility, and finally home on hospice. The hospice people were trying to make her comfortable while I was trying to keep her alive.

The C. Diff. infection, I think, was cured by an 8 week course of tapered Vancomycin but she had gotten weaker and weaker and could not stand up or walk. Some days I thought she would live then some days I thought she would die. It was awful. Near the end when she could not talk in sentences, I heard her say “God damn it” a couple of times when she was apparently realizing that she might not overcome this situation. Several times when she couldn’t talk, she reached out her hand to me and squeezed it and I got a chair so I could sit by her and hold her hand. I was crying of course. I think she held on as long as she could because she was worried about me.

The hardest thing I have ever had to do was watch her slowly decline and die.

I supported her in everything she did. She supported me in everything I did. We were each other’s best friend. The loss for me is almost unbearable. We were together 47 years and I was expecting more time together.

From a blues song, Saint James Infirmary http://www.astroshow.com/FolkMusic/Track 8.wma:

Let her go, let her go, God loves her, wherever she may be.
If I search the whole wide world over
There’ll never be another woman for me.

 

Proof of poster I designed and had printed by Staples:


 


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Last modified: 07/19/15