My journey officially began on August 10, 2003 when after a week of discomfort from a large distended abdomen, back pain and diarrhea, I agreed to let my husband take me to the emergency room. I was thought to be pregnant, easy to think as my belly was at least the size of a full term pregnancy and I certainly was waddling and frequently urinating as if I were pregnant! I went in determined that I would not leave until they found the reason for all of this. Little did I know that my diagnosis would change my life forever.
A few hours and a barrage of tests and questions later, a CT Scan was ordered. After what seemed a lifetime, the ER physician asked who my OBGYN was. I thought that was a very odd question until it was explained that the CT Scan showed a large, 17 centimeter, ovarian mass and I needed a consult with an OBGYN. I was stunned! This couldn’t be possible as just 3 weeks prior I had a perfectly “normal” yearly GYN appointment.
The doctor arrived, I was subjected to yet another painful internal exam, (just the beginning of the numerous ones that lie ahead) and more questions. Just as he began to explain this nightmare to Tom and me, he was called to an emergency delivery. For an entire hour we waited together, frightened and confused as to what was happening and what could be ahead.
Finally he returned and said that this was a highly suspicious mass and too large to have surgery in that hospital. A consult with an oncologist from Women and Infants Hospital in RI was necessary. The doctor referred me to an oncologist; a cancer doctor. My mind reeled - how could I have cancer? I was just fine 3 weeks ago! Although he would did not confirm it was cancer, I was not at all comforted by the words “highly suspicious” or the nurses who came in and said “I am so sorry”. After discussing my impending surgery I was sent home with an appointment first thing in the morning for a transvaginal ultrasound.
I do believe that night was one of the longest nights of my life. I don’t think I have ever been so afraid. I was only 45 years old, living a wonderful, happy life with an amazing hubby, four children, and countless friends and family I loved and somehow at that moment I believed "I am going to die".
I made it through that night wrapped in the arms of my sweet husband and because of the prayers and love of some special friends and family. I don’t know anyone who can cry all night and look great in the morning so needless to say as I walked into the doctor’s office I looked horrible, I was scared and very uncomfortable. Thankfully my “rock” and best friend was by my side as he has always been throughout our 26 years of marriage.
The ultrasound was far from a piece of cake and it confirmed the size of my tumor which I now named Elvira. It also confirmed the size and placement of my ovaries, which I dubbed, Cruella and Deville. After inquiring about my blood work, I was told my CA-125 was 580 - normal is below 21. (Cancer Antigen 125 is a protein that may be found in high amounts in the blood of patients with ovarian cancer. ) The office called for an emergency consult with an oncologist at WIH, my appointment was scheduled for August 14th. I am usually not short on words, but I left the office numb and speechless.
In the three long days waiting for that consult, much went through my mind, mostly, that I was not ready to leave my family. I will never forget sitting in the waiting room thinking, I do not belong here and this was not happening. I don’t know where the strength came from to walk into that exam room, but I believe it was because I silently repeated over and over, Philippians 4:13, "I can do all things through Christ who strengthens me".
More questions, nurses, not one, but two GYN/ONC’s giving horribly uncomfortable exams. The verdict - Elvira needed to go and soon. Surgery was scheduled for August 19th at 2:30 p.m. Funny, you never seem to forget these dates.
August 19th, 5 hours of surgery which included a total abdominal hysterectomy, bilateral salpingo-oophorectomy, omentectomy, washings and biopsies, 6 liters ascites fluid drained and 33 staples to finish up the job. Good bye Cruella, Deville and Elvira, who was quite large and ugly (I do have pictures of the beast). Ovarian cancer was confirmed in the OR. I would have to wait for my follow up for stage and grading, but the surgical team felt they got it all.
September 2nd the verdict is in. The surgeon's suspicions that I was stage IV due to the ugliness of Elvira, was not the case (power of prayer I say). Elvira’s medical name was Endometroid Adenocarcinoma, Stage 1, Grade 2. My doctor asked me if I named my uterus anything as a second unrelated cancer was found there. “Ursula”, Endometrial Cancer, stage 1B grade 1. Goodbye Ursula!
September 5th I started my first of 6 rounds of chemotherapy, cocktail of choice, Paxitaxel and Carboplatin. Chemotherapy, along with the steroids and numerous other meds for one thing or another, was no walk in the park, especially 2 days after each treatment when I thought for sure I had been hit by a Mack truck. By my last treatment on December 29th my CA-125 went from 598 to 7, a great indication that as difficult as it was, treatment did its job!
One thing I did during my journey was make a scrapbook. I journaled my thoughts, events such as shaving my head or getting chemo, took pictures of everyone I loved and cared for me during that time. I also have copies of all my hospital notes, reports and charts. It was a life changing experience for me; I needed to remember it all and perhaps someday it would help someone else on this journey. It is amazing how you can get through something as difficult as cancer with a positive attitude, the support of loved ones, lots of prayer and a team of doctors and nurses you trust with your life.
For me there was no getting back to my “normal” life after my diagnosis, there was however realizing a new normal and purpose for this journey. Finding a way to encourage and support other survivors so that they know they are not alone in their diagnosis and getting education and awareness of this insidious disease out into the community became my deepest desires. In the 12 years since my diagnosis, I have had the privilege of serving many newly diagnosed women and their loved ones through volunteering, fundraising events and working for a national organization specifically to support ovarian cancer Survivors.
I hold a special motto close to my heart, “In ALL things, good or bad, find the lesson or the blessing or it has happened for naught!” Ovarian cancer was a “bad” part of my life’s journey but because of it my life has a renewed purpose and has been richly blessed by so many wonderful people I would have not had the joy of knowing otherwise. I look forward to the new adventures and blessings God has in store for me and today, not only do I have that amazing guy still by my side, but our family has grown to include three daughter-in-laws and four beautiful granddaughters!