Introduction - Everything I Never Wanted to Learn About Cancer

Written by Sharon as told by Ruth.

This blog is being started in order to inform interested parties about my newly discovered cancer.  I have Gastrointestinal Carcinoid Cancer which has metastasized to my liver.

On August 20th, my doctor told me the biopsy of the lesions on my liver confirmed that I had cancer.  Looking back, my symptoms started in November 2008 when I was playing the organ for the eleven o'clock service at Centenary United Methodist Church in New Bern, North Carolina.  I felt my face turn red for no apparent reason.  This is one of the major symptoms of gastrointestinal carcinoid  cancer, called Carcinoid Syndrome.  Good sources for more information online are Cancer.org, cancer.gov and carcinoid.org.  My other symptoms have been swollen legs and ankles, blisters on my legs, loss of appetite and weight.  Each symptom was treated separately by my primary care doctor, the loss of appetite was blamed on the antibiotics I had been taking for MRSA, a type of staph infection I had last fall. 

After my daughter Sharon expressed her concern over my weight loss in June, I went back to my doctor and insisted that something was wrong.  He ran some blood tests and everything was normal.  I went back later, still bothered by my lack of appetite.  I had been weighing myself daily, relieved if my weight didn't drop.  Hubby John was trying his best to feed me and I tried to eat, but couldn't eat very much at a time.  I felt like I had to speak up louder to get my doctor's attention and told him again that something was wrong; I shouldn't be losing weight.  He listened better this time and ordered a CT scan done of my lower abdomen which revealed several lesions on my liver.  A biopsy done a week later revealed the lesions to be malignant, but a secondary cancer.  Primary liver cancer is usually seen in people who have had Hepatitis or alcoholics.  The cancer cells indicated that the cancer had metastasized from somewhere else in my body to the liver.  But where had it started?

Apparently my cancer is somewhat rare in that it wasn't until my oncologist, Dr. Chris Taylor, met with a group of other doctors that the primary source of the cancer was determined.  The doctors put their heads together in the meeting and figured it out....it was carcinoid cancer and that usually starts in the small intestine.  There is no known preventive tests for the small intestine as a colonoscopy only looks at the large intestine and I just had one of those done two years ago.  Regardless of the source, the treatment is the same.  The goal is to protect and save my liver as it is the most affected by the cancer. 

I started self-injections of Octreotide three times daily this Tuesday.  Actually John has taken on the nurse role since it's easier for him to reach my upper arms.  The Octreotide is used to manage the symptoms of Carcinoid Syndrome, the flushing of my face and neck being the primary sign. 

On Wednesday, I had an ultrasound done of my heart.  There are a few minor issues with it which will be discussed later after I meet with a cardiologist.  Daughter Sharon flew down from her home in Connecticut to accompany John and me as we visited the NC Cancer Hospital in Chapel Hill on Thursday (yesterday).  We met with Drs. O'Neal and Kuykendal whose candor and straightforwardness was really appreciated.  Up till now, we were pretty frustrated by the confusion of primary source, how bad it was, treatment, success of treatment, etc.  Sharon came along with the binder she put together to keep all my cancer stuff in one organized place and took notes.  The doctors discussed a procedure called chemoembolization in which they enter the liver through an artery in the leg and inject chemo directly into half of the liver at a time, effectively sealing off the rest of the bloodstream from the chemo drugs.  Sharon asked how effective this procedure was.  Dr. O'Neal responded that it's very effective in shrinking and controlling the cancer, enabling me to live another another 20 to 30 years.  John replied, "I'll take it!"  and Sharon said something to the doctor like, "I love you for saying that."

With that encouraging news, we discussed details with Dr. Dixon who will be performing the chemoembolization procedure next Thursday, September 9th in Chapel Hill, which just happens to be the anniversary of my parents' wedding in 1934.  Side effects of the procedure are minimal and I should be able to go on our Caribbean cruise in October as planned.  I'll have the other side of my liver done in a couple of months and remain on the Octreotide indefinitely. 

I plan on updating my blog (or Sharon will do it) as things progress and more information is learned in order to keep friends and family up to date without having to repeat the same story over and over.  If you'd like to sign on as a Follower in order to be notified of updates by email, that might be a good idea.  Thank you all for your prayers, cards, flowers, gifts and concern.  I truly feel loved and want to keep everyone informed.  It's just a lot easier for me to communicate to the masses via the internet.