Three ovarian cancer survivors recently met to share their cancer journeys and to provide words of advice to those who are newly diagnosed. Here’s who they are and what they have to say about living with ovarian cancer –
Who We Are
GINNY – “I am a pre-natal genetic counselor and have worked here at Johns Hopkins for thirty-seven years. Six years ago I married my long-time partner who is a retired pediatrician. We enjoy travel and one of my favorite places is Montana where my dad’s family comes from. I sing in a church choir and enjoy that very much. I also enjoy attending Center Stage performances with a group of female friends. In recent years, my husband and I have been caring for aging parents.”
WENDY– “I am 72 and a retired consultant in the field of organizational development. I have enjoyed a career in senior level management that involved working with individuals, groups and organizations to help them discover how to solve problems and achieve goals. I have been married for 50 years and have two children, a daughter who is an artist and a professor and a son who is a clinical psychologist. I also have two adorable grandchildren. My mother is turning 99 soon and has been a rock in my life. I love people and have friends the world over; I love to swim and walk for exercise and I practice meditation and yoga.”
MARCIA – “I recently turned 65 and just retired as a lobbyist representing non-profit public health organizations in Washington, D.C. I am a cancer survivor and a cancer widow – my husband of twenty-three years died of pancreatic cancer six months after I finished my cancer treatment. I have a stepdaughter that I keep up with. I live part-time on Naked Mountain in central Virginia and write this blog. I am also working on a memoir and volunteer as a patient navigator with breast cancer patients at Georgetown-Medstar Hospital in Washington. D.C. I enjoy nature and music and make regular exercise a priority.”
Our Cancer Histories
GINNY – “I was diagnosed with stage IIIC epithelial ovarian cancer in 2002. I was 50 so turning 50 was difficult. I immediately got tested for genetic mutations because of some family history and because I am a genetic counselor. I was found to be BRCA 1. So, I also worry about breast cancer. I had the standard debulking surgery that involved colon resection. I had the standard six cycles of IV chemotherapy with two drugs. Then I was offered additional intraperitoneal chemotherapy. It was not standard treatment so I did a lot to research to figure out if I should do this or not. The answers I got were conflicting, so that didn’t help. I finally decided to do it because I reasoned that if I got a recurrence and hadn’t tried it, I would always wonder. I did three cycles and was very sick; it was awful.”
“That was my initial treatment phase. Since then I have had four recurrences. They have been localized and each time I have had surgery followed by six cycles of chemotherapy involving different sets of drugs.” Wendy interjects – “So, they undid your zipper each time?” Ginny replies that they did open her up through the same incision site, but for two recurrences involving the liver, the incision goes diagonally across her abdomen. Marcia remarks, “I have incisions that go horizontal at the bottom of my abdomen and then vertical from the chest to the pubic area and cross over a little bit!” We all laughed about our crazy scar patterns.
Ginny has been cancer free for four years. She needed a double hernia repair six months ago secondary to abdominal weakness caused by her prior surgeries.
WENDY — “I was diagnosed at age 67, out of the blue. I thought I was the incredible hulk. I had never been ill so it was a complete shock. I have a rare kind of ovarian cancer involving two different kinds of cancer cells. I was also stage IIIC at diagnosis and was experiencing right before some bloating and knew that my waistline had expanded. I got the diagnosis on May 6th 2008 and on May 14th I was in surgery. I was put into an induced coma for six days to help me heal given the extensive amount of surgery that was done. A mere three weeks later I received six cycles of three different drugs to address both cancer cell types and then received three additional cycles of intraperitoneal.”
Wendy has had one recent recurrence after being cancer free for about 2.5 years, she is a little unsure how long since her medical team followed a slightly enlarged lymph node in her periaorta region for a year or longer before this lymph node began to grow and finally lit up on a PET scan indicating it was probably malignant. It took four months for her medical team to schedule surgery to remove the lymph node because two different kinds of surgeons had to be involved given its location. Wendy says, “It was very difficult to wait once the decision had been made to go ahead with surgery. But my oncologist says I have the slow, sluggish kind of cancer which is a good thing.” Wendy’s surgery was followed by six cycles of chemotherapy involving Taxotere, Carboplatin and Avastin. The latter drug, which interferes with cancer’s ability to form blood vessels, is a new treatment addition for many ovarian cancer patients.
Wendy had a more difficult time with chemotherapy with her recurrence, particularly intestinal gas and severe diarrhea. Her oncologist recommended she continue on Avastin after completing chemotherapy which she did for four cycles. However, she developed high blood pressure and had to go off the drug. Since stopping Avastin a few weeks ago, she has been feeling much better.
MARCIA – “I was diagnosed with stage IIIC epithelial ovarian cancer on March 12, 2008. I was 60 years old. I had my first laparotomy in a Virginia hospital where the diagnosis was made, but I transferred to Johns Hopkins for my follow-up care. I received three cycles of IV chemotherapy with two drugs, Taxotere and Carboplatin. Then I had another laparotomy followed by six more cycles of combination IV and intraperitoneal chemotherapy using the same drugs. I had very manageable side effects throughout, but became very fatigued by the end. My biggest problem was repeated infection of the abdominal port site for administering the intraperitoneal chemotherapy. My medical team nearly pulled the port out several times because of infection. I had to take antibiotics for this and once was hospitalized for C-Diff, intractable diarrhea. That was a real low point in my treatment journey.”
“I have been cancer free for four and one-third years.”
The toughest time in our cancer journeys
GINNY – “The initial diagnosis was very tough. I was confused, upset, drained. The first recurrence was also very tough emotionally. You finish treatment and think, “I beat this cancer,” and then it’s back.”
WENDY – “The initial diagnosis was very hard, shocking, unexpected. The recurrence has been tough too. It robs you of the innocence you felt. Living with uncertainty is hard.”
MARCIA –“The toughest times have been the initial diagnosis and then my husband’s diagnosis of pancreatic cancer and his death six months later. His symptoms first surfaced one week before my last chemotherapy.”
How we coped then and still cope now
GINNY – “Continuing to work has helped me. It was and is a good distraction from thinking about cancer. I was very fortunate to be able to be treated in the place where I work. My office was supportive about giving me time off for surgery, recovery, chemotherapy and then I came back full-time. Being treated in the place where I work gave me immediate comfort with my medical team that others may not have.”
“My husband’s support and reconnecting to friends who have been supportive has been very important.”
“I found the ovarian cancer support group at Hopewell Cancer Support in Baltimore very helpful. No one else really knows what you are going through like they do. It has also been a good source of information sharing on all kinds of issues.”
“My church community has been supportive and the prayers of so many friends has been a source of support for me.”
“I feel lucky to be still be here. I try to value the relationships I have with family and friends and don’t let things go by without fully experiencing them. The irony is that here I have cancer, but someone who thinks they are perfectly healthy can suddenly drop dead of a heart attack. So, valuing each person in my life and each experience is important to me now.”
WENDY — “I use the power of the mind. I have my own brand of spirituality, I live in the moment. If the sky is pretty, I soak it up. Awareness that death is real — I have stared into that black hole when I was in intensive care after the first surgery — helps me live in the moment, experience now. I use meditation and yoga as techniques to help me do this, to use the power of the mind.”
“Time helps healing. I had such a terrible time this last round of chemotherapy that I said to myself I would not do it again if faced with another recurrence. But as time passes and the discomfort fades from memory, I feel differently now. Time is healing in that way.”
“My husband and I have just reached a new insight – the lighter we can be about having and dealing with cancer, the better. At our age, 72 and 76, so many of our friends are dying, are ill, are losing their minds. Too much of our conversation has been about illness.”
MARCIA — “I am very fortunate not to have had a recurrence, at least not yet. This has allowed me long periods of time when I truly do not think about having cancer, except when I am making a concerted effort to help others who are being impacted by cancer. I also do much more living in the moment as both Ginny and Wendy now do. I am more relaxed and appreciate what I have and how I feel today, right now. It sometimes makes me almost giddy with a combination of indulgence, relief and gratitude.”
“But I am also very unfortunate in losing my wonderful life partner to cancer. My happiness is often interrupted with periods of grieving, even now, nearly four years later. What has helped me with loss is writing this blog about nature and its inherent joyfulness, as well as writing about cancer recovery in an effort to help and inform others who are impacted.”
“I am also writing a memoir about how my husband and I came to buy an undisturbed mountain in central Virginia, place the land under a conservation easement which earned it designation as one of the state’s 60+ natural area preserves, made wonderful discoveries along the way and then suddenly were faced with the challenge of battling two terrible cancers. Writing the memoir is very therapeutic for me.”
Our advice to those newly diagnosed with ovarian, or any other cancer
GINNY — “Be prepared that having cancer is at least a part-time job, and at times a full-time job. Allow yourself to rest, but stay involved in something that will distract you from having cancer. This can be work, as it was for me, it can be your children or grandchildren, it can be a hobby, a faith group, whatever will work for you. Seek support that will be helpful to you. This may be a spouse, a sibling or parent, a friend, a cancer support group that either meets in person, or online. Understand that family members may not know how to support you, be forgiving and help them. Ask for things you need, like a ride to the grocery store. Don’t delve too much into statistics about your cancer. They represent the average, and you are a unique individual, not the average. When the medical team gives you the treatment plan, make sure it is comprehensive – add to it whatever social and emotional supports you feel can be helpful to you, such as a faith group, cancer support group, complementary medicine, and so on.”
WENDY — “Develop trust in your medical team before you go into surgery or chemotherapy. Assert yourself by asking questions, and getting opinions from different sources, believe in yourself as you do this and then once you are satisfied, let the medical team do their work. Know that surgery and chemotherapy are instruments to help you, not hurt you. Keep your emotions steady, not too high, not too low. Listen to your body; let it tell you what you can bear, what you need help with. Don’t let cancer become the main dish in your life, keep it a side dish. One thing I do to help ensure this is read to young children. It is very engaging, it is the main course. Like Ginny, I have also found Hopewell Cancer Support in Baltimore very helpful and attend sessions of their ovarian cancer support group.”
MARCIA — “The most important tool you will need is someone who can support you, preferably the closer to you the better, but someone! Some people have legions of supporters, but you need at least one. Find ways to distract yourself from thinking about your cancer, whatever works for you as both Ginny and Wendy suggest. Try to exercise as much as you can. This is easier if you have done this regularly before diagnosis, but make a point to at least walk every day, or go to a gym and use the stationary bike or treadmill, do something! Exercise is a known mood elevator. Eat right – you know how to do this – fruits and vegetables, lean meats and dairy. Eating is difficult for many people undergoing chemotherapy, but the drugs to control nausea are getting much better all the time. This may be sacrilege for cancer patients, but stay away from sugary, fatty foods. Not every calorie is the same. There are powerful antioxidants, cancer-fighting qualities, in many foods. Help your body fight the disease. You can read more about this in the book, Anticancer, written by ¬¬¬¬David Servan-Schreiber MD, PhD a brain cancer survivor who is also a research psychiatrist. Keep a journal and write about what is happening to you, how you are feeling, what you are doing to stay busy and distracted, comment on experiences you have, write down your dreams.”
Ginny, Wendy and I know what you are going through. We wish you the very best on your own cancer journey.