By: Annette McElhiney
Most of us have at one time or another worked outside the home and with other people. Certainly, most of us have been introduced to the concept of team building. According to Wikipedia, “Team building generally sits within the theory and practice of organizational development, but can also be applied to sports teams, school groups, armies, flight crews and other contexts.” I think it can be linked to coping with cancer as well!
Initially, when one is diagnosed with cancer, ones’ reactions jump from shock, to disbelief, to confusion, to anger, to worry, to fright, to despair, and, not necessarily in any particular order. Yet, once the surgery is over, the pathology report back, and the chemo started, what do you do next?
Of course, a stage III cancer survivor given a 25-35 percent of living 5 years like I was, may think of writing a will, signing a Do Not Resuscitate order (DNR), making a plan to tell your children, grandchildren and friends of the disease etc but the question remains “What else can you do to reclaim part of your life?”
Perhaps, I was more selfish than others in rejecting the most logical , activities, but almost from the beginning I actively pursued building a team that would help me survive, all the while I saw my surgeon and continued the grueling regime of chemotherapy.
Because I felt physically debilitated and had lots of time to think, I knew myself well enough to know some of the things I would absolutely need in order to survive. While I was thinking, I began painting the painting accompanying this post. Visually, perhaps because I felt so uncertain, vulnerable and Insecure, I saw myself sitting at the center of a circle surrounded by various figures. All these figures joined hands to create an enclosure where I felt safe enough to heal.
I realized that even though I had a Gyn-onc who had done my surgery, I absolutely needed:
- A knowledgable, but supportive and hopeful, gynecologist/oncologist who would willingly be the technical leader, not dictator, of my team. Because my initial relationship with my surgeon wasn’t compatible (he wanted to make the decisions and for me to be quiet and obedient), I sought a 2nd and 3rd opinion from another 2 doctors. The 2nd Dr. direly repeated the1st prognosis: “ultimately you will die of ovarian cancer!” I didn’t accept this prognosis from either number 1 or 2. Instead I got a 3rd opinion. She told me I was doing great for just 6 months after surgery, and her job was to keep me alive for 10 years after which there could be a cure for ovarian cancer. I’m alive 7 years later and a cure seems closer. So if your Dr. doesn’t seem to put your needs first, whether physical or psychological, outsource him/her and get one who does.
- A reliable and adaptive caretaker is also absolutely essential. When I was diagnosed at age 67, I’d been married for 47 years to my husband and had supported him through 2 heart surgeries. He immediately stepped up and worked like a champ to feed me, accompany me to Drs, appointments, cheer me up and encourage me. Often, he wanted me to eat a steak, but when I told him I couldn’t and preferred grilled cheese and tomato soup, he faithfully made it for me sometimes surprising me with yummy root beer floats! So again find someone who can and will put you at the center and work towards helping you heal emotionally as well as physically.
- A “Go Between”, an assistant oncology nurse, a nurse navigator, a social worker or someone who had access to my Dr. at all times and could answer questions for me etc.
- A group of supporters and friends is imperative. One of the first overwhelming feelings I had after diagnosis was loneliness. Neither my Dr or my caretaker, knew what it felt like to have ovarian cancer. I had many friends with breast cancer, but I didn’t even know anyone with ovarian cancer. A friend of mine told me about her friend who was the Vice President of the Colorado Ovarian Cancer Alliance. I called her, we went for coffee and I asked her the many questions I had. She invited me to a march at the capitol to raise awareness about ovarian cancer and then to the next support group meeting at a local church. Slowly I began feeling less and less alone. Today 7 years later, I still go to group meetings. Many faces are no longer there (except in my mind and heart) but my group facilitator says having long time survivors attend gives newly diagnosed women hope. These meetings always make me put the miracle of living front and center, and I renew my gratitude to be alive and my commitment to support others.
- In addition, I continued reading in various blogs and columns about ovarian cancer:
- Inspire.Org — The National Ovarian Cancer Alliance’s Site for Ovarian Cancer
- Libby’s Hope — Helping Ovarian Cancer Survivors Persevere Through Education
- Med Worm — Ovarian Cancer RSS
Each medical term or article I didn’t understand, sent me back to read more. In addition I began searching other medical websites like Science Direct. My thirst for knowledge was insatiable.
In 2010, somehow I found the Clearity Foundation’s website http://www.clearityfoundation.org. I asked my own doctor if I should get a molecular profile and she said it was a good idea. Weeks later, Dr. Shawver phoned to give me my molecular profile report. Her knowledge sparked my appetite for understanding molecular profiling and 2 years later she was the invited speaker at the Colorado Ovarian Cancer Summit. Since that time, I’ve known that if and when I recur, I will again seek Dr. Shawver and Clearity’s assistance because they are an essential part of my team. The passion they have for helping survivors shines through in all their actions and words.
Team building is important to me because after my diagnosis, my life has shifted in a totally different direction. Before, I was retired, I thought my professional life was over. Consequently, when we retired to a golf community in warmer Southern Ca. our major goal was to enjoy life after spending years of working. For many years, doing so seemed to be a dream come true
Then, entering center stage, came the diagnosis of High Grade Serous Undifferentiated Ovarian Cancer IIIC. Initially, despite the support I was given, I felt very different from every woman in my fun loving community. Slowly, over the last 6 years of remission, I tried to understand what I wanted to do with the rest of my life.
Gradually, I realized the satisfaction being a part of the ovarian cancer community gave me. For awhile I served on the Survivors Teach Students at the University of Colorado medical center. Once I asked the director of that program why I was the oldest speaker. She said “Because you are the oldest one doing this Annette.” Initially, I felt antiquated and thought I’d lack credibility because of my age. Then remembering all the sisters I’d lost, and how fortunate I’d been, I said to myself,
“Shame on you! You are alive, healthy, and your voice is strong. Go out and be the Gray Panther of advoacy for ovarian cancer.”
So here I am! Perhaps not in the prime of my life physically, but loving each day.
In 2014, and 2015, served on the Department of Defense Ovarian Cancer Research Program’s (DODOCRP) committee reading and critiquing proposals for ovarian cancer research. Doing so introduces me to many innovators and scholars who work so hard trying to find a cure for this disease and a better quality of life for survivors. I would encourage any survivor to do this as it renews your hope!
Suddenly, I’m no longer adrift but caught up, instead, in the excitement of not just hoping for a cure, but rather in educating, fund raising, and volunteering for it. I feel safe and invigorated by by interactions with my Dr. and the Clearity community.
What I’m hoping my posts on the Clearity portal will do is gather together many like minded survivors who seek and share both information they have about the disease and their personal experiences with it.
None of us may have deliberately chosen this cause, but it has chosen us! Now that it has, I hope you will join me and others in trying to understand and accept the challenge!