Judy Fornia

June 2014

I am a retired RN with more than 25 years experience in health care management and quality improvement. My cancer journey is an example of how long-term effects of life-saving treatments changed my perspective of what “normal life” is.

My gynecologic history was unremarkable. I had a hysterectomy in 1992, and the pathology confirmed fibroids. My tubes and ovaries were removed in 2001 when I had bladder surgery, and the pathology was normal. I was faithful about my annual exams and pap smears. I assumed I was “safe” from gynecologic cancers.

I was treated for irritable bowel syndrome for several years prior to my cancer diagnosis. My symptoms seemed to worsen beginning in 2003 — more gas, more unpredictable bowel activity. But I had just started a new job, and my mother had died in late 2002. There were new stresses in my life, and I hadn’t taken the time to schedule my annual gynecologic visit.

In March 2003 (at age 56), I had some vaginal discharge that caused my gynocologist significant concern, and she asked to see me right away. She found a pelvic mass, which was confirmed by diagnostic imaging (ultrasound, transvaginal ultrasound and CT scan).

The next day my gynecologist referred me to a gynecologic oncologist, and my journey into the world of cancer began. To be honest, the only word I remember hearing initially was “oncologist.”

My new gynecologic oncologist took my history into account (including the fact that I no longer had any gynecologic organs) and first scheduled a biopsy about a week later. This confirmed a malignancy. My CA-125 was in the normal range and has remained in the normal range since.

Numbness, disbelief, sadness were some of what I remember feeling on May 1, 2003 when my gyn onc told me the tumor cell pathology confirmed Stage IIIC primary peritoneal and endometrial cancer. Six of 13 lymph nodes tested positive for cancer. How could this be happening? My children and husband were as confused as I was.

After my cancer diagnosis, I had six weeks of weekly chemotherapy with taxol and carboplatin, followed by six weeks of daily abdominal radiation, and then three sessions of internal radiation (brachytherapy). The radiation therapy was to treat the endometrial cancer component and caused significant weight loss from ongoing bowel problems. Then my gyn onc said, “Since you did so well with the first round of chemotherapy, why not do another six sessions?” He was right; I had minimal problems with chemotherapy, unlike many others. My treatment was completed in January 2004 following the additional six weeks of chemotherapy.

I remember moving though all of this like a robot. I kept working, inspecting nursing homes in Washington for licensing and quality of care. Work was my support group; work kept my mind active and focused on other things; work gave me control over an aspect of my life; work helped provide some normalcy to my life. Some might call this denial, but for me it was a life-saving and life-control attitude. I decided cancer is part of my life, but it is not my whole life.

In 2006, the effects of all the radiation treatment converged in my body, and I started learning how to manage new “normals” in my life.

That summer I had a colostomy due to bowel stricture, and an ileal conduit diverting urostomy due to blockages in my ureters that were causing kidney failure. My bladder was removed due to excessive bleeding from radiation damage. Unfortunately, my radiation-damaged bowel did not react well to surgery and a second surgery was needed to resect dead and leaking intestine.

I have little memory of four weeks in ICU, of pain, or even the second surgery. It was my family who suffered and felt helpless. I came home after six weeks in the hospital with a large open abdominal wound that took four months to heal, and severe GI mal-absorption and weight loss. I was home a couple of weeks when I developed blood clots in both my legs. Fortunately in 2004 I had had an IVC (inferior vena cava) filter inserted due to a history of two pulmonary blood clots during and after radiation therapy. That way the filter “caught” the clots before they could travel above the pelvis and cause serious damage or death. I finally had to face reality and resign from work when I realized my health was not going to return to a pre-surgery level.

I continue to manage the long-term effects of treatments that were used to prolong my life. One of these is spinal compression fractures. The radiation caused the lumbar bones to weaken and I have three compression fractures that limit my ability to do some things now. Beginning in 2007 I had numerous episodes of partial bowel obstructions requiring hospitalizations three to four times per year.

The pain I endured was my “10” on the pain scale. My diet became more and more restrictive and less nutritious as I tried to avoid eating foods that contributed to the obstructions. Finally in 2013, my surgeon and I decided it was time to remove as much of the scarring, adhesions and damaged bowel as he safely could. In December 2013 I had this major surgery, came home, but had to go back into the hospital a few days later with a post-operative bowel obstruction. I am happy to say that was the last bowel obstruction I’ve had, and that I can now eat foods that I have not been able to enjoy for several years.

But I consider myself one of the fortunate ones, and consider my life blessed. On May 1, 2014 (now at age 67), I became an 11-year survivor. Being told there’s a 70-80% chance you will not live five years has made me plan to enjoy every day — my husband, our three children and their spouses, our eight grandchildren (in September there will be nine!), my hobbies, my pets, and traveling with my husband.

I find a great deal of satisfaction in teaching and supporting self-advocacy. I am a speaker in the Survivors Teaching Students® (STS) program, and especially enjoy speaking to students in nursing schools. I also completed the Peer Support training program through the Ovarian Cancer Alliance of Oregon and SW Washington, and spend time with others who are experiencing a cancer journey as a patient or a family member.

Additionally, I am a volunteer Long-Term Care Ombudsman, helping residents in long-term care facilities maintain their dignity and rights through self-advocacy.

I believe those who must make the cancer journey are incredibly strong people, embodying the definition of the word “survivor,” which is defined as: “to remain alive; to live on; to continue to function or prosper despite hardship.”