Darlene Jaman

My dark night of the soul had started—stuck in bed for three week with pneumonia and chronic bronchitis. My only companion was a TV on that date 9/11/01. My tears didn’t stop! I decided then, that regardless of what it took, I would go for my dreams to be with my grandchildren in Puerto Rico.

By the fourth of August 2002, I was out of LA—it had taken a full year of packing, placing belongings into storage, garage sales, letting go of my clients. Moving out…and moving in some personal things to a trailer on my sister and brother-in-law’s property next to their beautiful home in the valley, abetting me to come back with NO timetable. I wanted to be a gypsy. During that time, I also changed to Kaiser Woodland Hills and met new doctors, who performed exams, lab work and a mammogram right before I left town.

When I arrived in Puerto Rico, I rented a small apartment close to my son and the grandkids and began to look for work… it was then I got the first of many phone calls. On August 19, 2002, a letter arrived from Kaiser bidding me to come back to take more tests. No way would I! It had taken too much to get here, close to my family. But, their x-ray findings showed the lumber spine was not normal. They thought there was a chest abnormality. I needed more tests?

Letters and calls from my doctors kept coming. Kicking and screaming, a wave of that dark night crept into my bones. Then, a call from my sister and her plea for HELP! “Please come home.” She could not cope alone. Her husband had lung cancer! 8/19/02

I walked the beach that night totally crushed; the wind had torn down my sails and been knocked out of my dreams! I had to go! I had a place to go. That little trailer next door to their home would be fine. Little did I know that this would be the beginning: my nest to fight the cancer and to be of service.

I don’t know how long the “Carcinoid tumor" stayed hidden in my right lung. I felt fine. ~ I was scared and confused going through the cancer discovery process with my son at my side. I needed answers from the battery of tests: PET scan, PULMONARY FUNCTION TEST. BRONCHOSCOPY CT scans, CAT scan, Octreotide Scan etc. Findings: “a mass” right side bottom near windpipe. Also spots of possible Pneumonia scars: Then the call from Dr. Fife: THEY FOUND LUNG CANCER.

SURGERY was set on 11/13/02: Partial Removal of “Carcinoid cancer tumor” 3 cm from the biopsy (note: still some of that tumor could NOT be taken out.) WHY? Dr. Fagolu, M.D., Remove staples; One month later. 12/8/02 still weak. Still in pain. Help!

The only light was from dear Nickolette Way and her Carcinoid Support Group, who gave me real information and a direction on understanding Carcinoid tumors. I Found Help. Through this group, I found doctors who had many other cases of this very rare slow growing Carcinoid tumor.

I cannot tell you the day, time or year from one doctor’s office, emergency room visit, and hospital to the next, with the three of us in such bad shape. My heart broke when the will to live was gone from my sister Myrna as her husband got close to passing. I became caretaker, cook, and driver and finally the day came to wash and pray over their bodies… lay them to rest. They both died in my arms. Bob Entwistle Jr. passed away on Father’s Day 2003. My sister Myrna hardly got out of bed that year before she too died, broken hearted and crazed from brain cancer 8/27/04 I Left Kaiser Permanente Woodland Hills – Left the valley. Their property sold. Homeless. I was a gypsy again. The dark night had passed. Thank God for giving me this very special time. My son took me in and I am now painting.

Karen S. Johnson

I was diagnosed in November of 2005 with Neuroendocrine Carcinoma. Primary was in the tail of my pancreas, with mets to the liver and a vertebrae. After radiation and four months of chemo to try and shrink the primary, a distal pancreatectomy was performed with removal of my gall bladder, spleen and 14 lymph nodes. I currently take a double dose of Sandostatin, and will be seeing a new doctor at UCLA this month. Thanks for letting me be a member of your organization, even though my stripes are a little different!

Silvia Knight

Silvia Knight was diagnosed with neuroendocrine carcinoid disease in December 2004, after admission to the hospital for a bowel obstruction. After extensive surgery and a later liver chemoembolization, she continues to fight the good fight. Silvia celebrated her 80th birthday last October. She is currently enrolled in a clinical trial for the new Novartis SOM 230 at Cedars Sinai Medical Center in Los Angeles and is under the nurturing care of Dr. Edward Wolin at Cedars-Sinai Medical Center and Dr. Pisegna at UCLA. Silvia always has a positive attitude, which she says is "what really counts."

Evelyn Long

In August, 2003, I was rushed to the hospital for emergency surgery for a ruptured colon. I had recently complained to my doctor that I was always tired (he said don't work so much), that I had a lot of abdominal rumblings (he said take Metamucil), that I couldn't get over colds (he said take vitamin C), and that I had a hot flash when I drank wine (he said don't drink wine). These are all the seldom recognized symptoms of carcinoid syndrome.

I was in critical condition and in the hospital for three months after extensive re-routing of my small and large intestines. My family's support got me through those dark days. Two years later I had liver resection to remove the metastatic tumors. A third surgery removed the remaining few carcinoids and included a hysterectomy to remove a newly discovered, aggressive endometrial cancer. I'm now symptom free, feeling good, and enjoying this marvelous gift of life.

I was first diagnosed with rectal carcinoid cancer 45 years ago, in 1961. I grew up during the depression and things were very bad in Wales. Mass unemployment and the saying “It's a great life, if you don't weaken.“ was my grandmother’s. Over the years has become one of my expressions.

Jean has not weakened!

After biannual check ups for five years I finally stopped worrying about it. In 1998, there was a reoccurrence. I had surgery for rectal/pelvic tumor plus total hysterectomy. In 2005 I had another surgery removing 40% of my liver and also RFA to the other side. 2007 has brought news of bone metastisis.

I am not having treatment for bone mets at the moment, but understand if they become a problem I can get radiation. I had about four weeks of chest pain, seems I may have had a stress fracture. At the moment all is well and I am truly thankful.

I truly believe I am blessed to have found our support groups and the kindness and expertise of my doctors.

Jean is very active in the South Bay carcinoid support group and brings hope and inspiration to many through her cheerful attitude and frequent e-mails.