Natalie Leithem

May 2015

I am 53 and have been married to my high school sweetheart for almost 30 years. We have 3 adult children ranging in age from 22 to 28. In 2013, my family and I celebrated two big occasions: the birth of our first grandbaby and the wedding of our oldest daughter. Life looked great. Little did I know what was to come.

During the week of the wedding, I began having diarrhea, which I assumed was due to nerves of making sure all the important details of my daughter’s wedding were coming together. Although I had struggled with IBS (Irritable Bowel Syndrome) for several months the previous year, it had been under control. Little did I know at this time, but the subtle changes I had experienced for over one year like changes in my bowel movements, frequent urination, pain with intercourse, and post-menopausal bleeding, were some symptoms commonly reported by women with ovarian cancer.

One week after the wedding, “IT” revealed itself when I felt something painful near my right ovary area while having a bowel movement. As I slightly repositioned, the pain subsided. A few days later, during a yoga class, I felt that same pain. As I continued my regular workout routine, I could feel the pain with every movement and I knew something was definitely wrong.

I was unsure of which of my doctors to call, so I began with my urogynecologist. She had performed a stress incontinence procedure five months previously, so I thought maybe something was wrong with the “device” inside me. After anxiously waiting one week for the appointment, I noticed things were getting worse. I wasn’t feeling well, was overly fatigued and knew something was not right. At the appointment, I expressed concern to my doctor that I thought I had a tumor near my right ovary. She topically examined the area and specifically told me “the good news is you do not have a mass.” My vaginal examination of the device was also fine so she referred me to a gastroenterologist and ordered lab work since I still was having diarrhea. My biggest regret that day was not insisting I get an ultrasound.

After this appointment, I felt like I was on my own. I could not see the gastroenterologist for two weeks even though I expressed the urgency of my condition. I was beyond frustrated and not sure what to do. Nine days later, I was finally able to get an appointment with an internist who clearly empathized with my journey and discouragement. I was in so much pain, and I pleaded with him to admit me to the hospital.

However, he wanted to take one step at a time and ordered CT scan first. Unfortunately, this could not happen until much later the next day. I knew immediately I could not wait, so my husband took me to the emergency. After several tests, including a MRI, CT scan and a transvaginal ultrasound, the concerned look on the specialists’ faces indicated to us that indeed something was found. We were told it looked like I had a grapefruit-size tumor on my right ovary and a mass in my chest cavity. One of the doctors could clearly feel the mass as she examined the area near my right ovary. She held my hand as she tried to comfort me. Later, I was given a tumor marker blood test called a CA-125 and learned my “number” was over 1400; 35 and below is considered normal.

The next day, we were told to have family members present as we met with a gynecological oncologist. I was in shock hearing the word “oncologist.” Cancer had entered into my precious world.

We were told it looked like I had stage IV ovarian cancer. There was no sugar-coating this. I remember the doctor telling me “I’m going to save your life and it will not be easy for you. You must do your part and fight very hard if you want to live.” We all cried and were numb with disbelief and fear.

Ovarian cancer? What little I knew of this disease was not good. My life was changed in that moment, as was my family’s.

On Tuesday, September 17th, 2013, exactly one month after my daughter’s wedding, I underwent the most difficult surgery I could have ever imagined. Called a debulking, this surgery included a hysterectomy, removal of my appendix, resection of omentum, removal of 12″ of the large intestine, and removal of some lymph nodes. After the surgery, I was officially diagnosed with stage IIIC ovarian cancer.

When I met my oncologist for the first time, she shared the options for my treatment. Additionally she suggested genetic testing for a mutated gene which could possibly explain why I got ovarian cancer. Two months later, I found out I was BRCA1 positive, which meant I also have 87 % lifetime risk of breast cancer. I felt like I was living a nightmare while trying to fight for my life through chemo.

For the next seven months, I endured seven difficult rounds of chemotherapy, two of which were Intraperitoneal, also known as IP therapy. IP therapy is done through a surgically implanted port in the abdomen.

Since September 17th, 2013, I’ve had seven surgeries. I chose to eliminate the 87% risk of breast cancer by having a bilateral double mastectomy and breast reconstruction, which I completed in January of this year.

Since learning about this genetic mutation and the high risk it presents of breast and ovarian cancer, my family members have been tested. My 22 year old daughter tested positive as did my sister. Gratefully, this information will reduce their risk of these life-threatening diseases.

I am forever grateful for each one of my doctors and medical staff that helped me throughout my journey. My pharmacist played a huge role during the course of my treatment. On my first day of chemo, he took time to thoroughly explain the chemo/medication regimen by providing a detailed calendar of days I would start a medication and when to stop based on my chemo schedule. This made it much easier for my husband to follow, and the bathroom slowly transitioned into a mini-pharmacy. The same pharmacist also personalized the type of meds I would take for nausea and emphasized the importance of how to avoid constipation. I had constant difficulty with the chemo regimen, which changed at least three times, and he would team up with my oncologist to discuss what the next plan would be to get me through each cycle. He treated me as an individual, knew me by my first name and always followed through on his word. I often felt like I was his only patient as he always took his time to answer my questions or problems; I could easily reach him and he always reassured and encouraged me.

I’m happy to say that as of May 6, 2014, I have no evidence of disease. I continue with blood tests and pelvic/rectal exams every three months. I am choosing to live life to its fullest, appreciating each day even though this diagnosis will always be a part of my story. I am a survivor!

Editor’s Note: Natalie’s wonderful and supportive family members, including her parents, all shaved their heads prior to her beginning chemotherapy. The only member who didn’t wasn’t there to do so.