We had just returned from a fabulous trip to Paris in September 2009. It was our 15th wedding anniversary. I was experiencing some post-menopausal spotting, so when we returned from the trip, I made an appointment with Dr. Taro Adachi, my gynecologist at Mercy Medical Center in Baltimore.
Dr. Adachi ordered a sonogram and during the sonogram, the technician could not find my ovaries –neither could the radiologist. Finally, they sent me with film in hand to see Dr. Adachi. Because the films showed something, but Dr. Adachi could feel nothing, he ordered an MRI, which I was able to schedule quickly.
The radiologist who read my MRI called Dr. Adachi, who immediately scheduled an appointment for me early the next day. Based on the radiologist’s report, Dr. Adachi explained that I had a cancer that was not a tumor but rather made up of mucus. He referred me to Dr. Armando Sardi, an expert on the subject, and insisted that I follow up that day.
Chuck and I scoured the Internet for information about this mucus type of cancer and found very little. We talked about the severity of what we were facing and what odds were we willing to take. If there was treatment available and the odds were above 50 percent, we would go for it. If the odds were less than 35 percent, then I would refuse treatment. Between 35 and 50 percent, we would have to think about it. So, we were very well prepared to meet with Dr. Sardi.
Dr. Sardi showed us the CT scan, which he ordered prior to my appointment. His initial diagnosis was appendix cancer, although the diagnosis was changed to Stage IV PPC following pathology analysis on tissue removed during surgery. He explained that the best treatment option would be cytoreductive surgery with heated intraperitoneal chemotherapy (CRS with HIPEC), a major surgery lasting up to 18 hours, removing organs that were affected, and finally a hot chemotherapy bath (107.5 degrees for 90 minutes) because the heat would kill the microscopic tumors that could not be removed surgically.
Dr. Sardi gave me an 80 percent chance of recovery. We felt like we had won the lottery! We had gone into the meeting expecting a death pronouncement only to be given hope. Dr. Sardi said that it could take at least two months to recover from the surgery, but perhaps no chemotherapy would be necessary afterwards.
Surgery was scheduled with only three weeks to prepare. I had two pre-operative procedures and arranged for around-the-clock care while in the hospital at the advice of Dr. Sardi’s team. The surgery was hard on the surgical team, and recovery was hard on my team and me. Surgery lasted 10 hours and required the removal of my spleen, gall bladder, ovaries, uterus, appendix, fallopian tubes and part of my liver. Remarkably, I was out of my bed and walking a few steps within 24 hours of surgery. Friends rallied to provide care, along with an excellent and caring medical staff during my 10-day stay.
My son, Alex, created a blog called Helen’s Update so that Chuck could post my progress each day. Our daughter, Anna, flew in from L.A. and stayed for 10 days to help Chuck take care of me. I needed help getting out of bed, walking, eating and taking my medications. Progress was slow. The Mercy medical team was wonderful –always available when we had questions and constantly reassuring me.
By mid-December I had another CT scan that came back showing no cancer. However, I had lost 30 pounds and could not eat. Everything tasted like cardboard. Even water had a bad aftertaste. I also slept more hours than I was awake.
In late January 2010, I began chemotherapy with Dr. Peter Ledakis, a colleague and research partner of Dr. Sardi at Mercy. He prescribed six treatments of a combination of Taxotere and Carboplatin, delivered every three weeks. It was eventually extended by another six treatments, but with only one drug and spaced out every four weeks.
As expected, I felt ill, weak and crampy, but the anti-nausea drugs worked well. My bowels fluctuated from too tight to too loose and I was extraordinarily tired for two weeks. Then, I would regain my strength and feel pretty good only to go back in for another treatment. Other side effects of the chemo included continued digestive issues, neuropathy in my feet, body aches and peeling fingernails. Such is chemo. I used acupuncture three times per week, which was very helpful and I would recommend it to anyone who is recovering from cancer.
Through it all, I discovered that a positive attitude was crucial to my recovery. It was difficult, but most of the time I was optimistic, as were those around me. My doctors were so very pleased with my progress and very reassuring when I was in doubt. I measured my progress in unconventional ways: from the use of electric scooters at the grocery store to holding onto a cart a month later. Even though I suffered from fatigue all of the time, when I saw other patients, I realized that I could have had it much worse.
The support of my family, friends and medical caregivers has made all the difference to me along my cancer journey, and it is a gift to have Dr. Sardi and his care team to guide me through this disease and treatment.
I have been on my cancer journey for two years and I am happy to report that I am currently cancer free! I know from first-hand experience that this disease is truly horrible, but there is hope. Through networking, I have found tragic stories as well as incredible survival stories. One of the patients in Dr. Sardi’s care who was diagnosed with PPC more than 17 years ago, underwent CRS with HIPEC and is currently alive and disease free. I am committed to creating awareness about this disease and helping others survive by supporting the actions that will discover what causes the cancer, how it develops and the tests that will support early, correct diagnoses. Sharing the story of my journey is one of the steps that I hope will create awareness and hope for others.
Read more details about Helen's Journey on her Blog: http://helenupdate.com/