Author: Aurelie Chuong, Secretary & Treasurer - [email protected]
I spent the summer of 2014 at Ovar’coming Together, an Indianapolis-based ovarian cancer non-profit organization, for my MPH practicum, working closely with the Executive Director, Robin, and the Administrative Assistant/Volunteer Manager, Kelly. The organization’s mission is to raise awareness about ovarian cancer, support survivors, caregivers, and their families, and fund research.
Ovarian cancer is a cause that hits close to home as I am a survivor. It is important to note that my and Ovar’coming Together’s definition of a survivor follows that of the National Coalition for Cancer Survivorship’s definition, which define a survivor as anyone with a history of cancer, from the time of diagnosis and for the remainder of life [1]. I was diagnosed at the age of 26 with a borderline ovarian tumor as I was doing my doctoral studies in the Department of Biochemistry at Purdue University. I underwent two (2) surgeries and went back to the lab; however, something changed after recovering from the surgeries. With the support of my family, my advisor, and my closest friends, I transferred to Purdue’s Master in Public Health (MPH) program in order to pursue a course of study to help people more directly and share my story. Today, in terms of my recovery, I have been in the clear for over a year and a half now and I am back to my old active self. I was lucky that I went and sought help when I felt something was not normal and that my health professionals made appropriate and timely referrals to help me.
Raising Awareness
Ovarian cancer is the deadliest of all gynecological cancers and many women believe that the Pap smear can detect the disease; however, the reality is there is no screening test available. Because of my personal experience with ovarian cancer, I want to spread the word about ovarian cancer as it can happen to any woman, at any age, and of any race, which aligns perfectly with Ovar’coming Together goals. The organization raises awareness to the Indiana community through their Speakers Bureau and booths at health fairs by distributing literature, symptom cards, magnets, etc. Unfortunately, the symptoms of ovarian cancer, such as abdominal bloating, pain, urinary symptoms, and unusual fatigue, etc. [2] are subtle and persistent and they could be misconstrued for other medical issues that could be benign, which is why women should not be afraid to seek help when they feel something is abnormal.
Supporting survivors, families, and caregivers.
The majority of Ovar’coming Together’s activities focus on supporting survivors and their support system through fundraising activities and survivor events. Some fundraising activities, which include raising awareness, include a Basket Bingo Benefit, Turn the Canal Teal, Dine and Donate events, and the annual Teal Ribbon Run/Walk (coming up on 27 September 2014!). Ovar’coming Together also puts together an annual survivor luncheon to honor all ovarian cancer survivors. There is a monthly Gynecological Cancers Networking group and as part of my practicum, I started a young survivors group. There are many other events that can be found on the Ovar’coming Together website [3].
You Only live Once – Young Survivors Group (YOLO-YSG)
Robin has had a young survivors group on her to-do list ever since some young ovarian cancer survivors expressed the need to have a group their own age. As a temporary measure, she decided to send them to support groups for other cancers (i.e. breast cancer) but the young survivors felt that they did not have anything in common. For my practicum project, Robin and I agreed that I help start a young ovarian cancer survivors group. During a meeting with other young survivors who happen to be past the treatment stage of cancer, I thought they would ask for a support group, but as it turns out, the need was for a networking group. We felt that family, friends, and caregivers would get tired of hearing us talk about ovarian cancer a year after the fact; after all, we are past it, we have survived! This group would give us a safe place to openly talk about our unique experience(s) with ovarian cancer because we focused on getting better when we were sick, but now, we want to reflect. We collectively decided to do “bucket list” activities, hence the YOLO nickname. Our first outing was ziplining at Eagle Creek Park and we are planning to go cliff diving, visit a haunted house for Halloween, SkyZone (indoor trampoline world), and a polar plunge! We will also meet up for dinner once in a while but I would love to hear any other suggestions you may have!! See the pictures below from ziplining!
I spent the summer of 2014 at Ovar’coming Together, an Indianapolis-based ovarian cancer non-profit organization, for my MPH practicum, working closely with the Executive Director, Robin, and the Administrative Assistant/Volunteer Manager, Kelly. The organization’s mission is to raise awareness about ovarian cancer, support survivors, caregivers, and their families, and fund research.
Ovarian cancer is a cause that hits close to home as I am a survivor. It is important to note that my and Ovar’coming Together’s definition of a survivor follows that of the National Coalition for Cancer Survivorship’s definition, which define a survivor as anyone with a history of cancer, from the time of diagnosis and for the remainder of life [1]. I was diagnosed at the age of 26 with a borderline ovarian tumor as I was doing my doctoral studies in the Department of Biochemistry at Purdue University. I underwent two (2) surgeries and went back to the lab; however, something changed after recovering from the surgeries. With the support of my family, my advisor, and my closest friends, I transferred to Purdue’s Master in Public Health (MPH) program in order to pursue a course of study to help people more directly and share my story. Today, in terms of my recovery, I have been in the clear for over a year and a half now and I am back to my old active self. I was lucky that I went and sought help when I felt something was not normal and that my health professionals made appropriate and timely referrals to help me.
Raising Awareness
Ovarian cancer is the deadliest of all gynecological cancers and many women believe that the Pap smear can detect the disease; however, the reality is there is no screening test available. Because of my personal experience with ovarian cancer, I want to spread the word about ovarian cancer as it can happen to any woman, at any age, and of any race, which aligns perfectly with Ovar’coming Together goals. The organization raises awareness to the Indiana community through their Speakers Bureau and booths at health fairs by distributing literature, symptom cards, magnets, etc. Unfortunately, the symptoms of ovarian cancer, such as abdominal bloating, pain, urinary symptoms, and unusual fatigue, etc. [2] are subtle and persistent and they could be misconstrued for other medical issues that could be benign, which is why women should not be afraid to seek help when they feel something is abnormal.
Supporting survivors, families, and caregivers.
The majority of Ovar’coming Together’s activities focus on supporting survivors and their support system through fundraising activities and survivor events. Some fundraising activities, which include raising awareness, include a Basket Bingo Benefit, Turn the Canal Teal, Dine and Donate events, and the annual Teal Ribbon Run/Walk (coming up on 27 September 2014!). Ovar’coming Together also puts together an annual survivor luncheon to honor all ovarian cancer survivors. There is a monthly Gynecological Cancers Networking group and as part of my practicum, I started a young survivors group. There are many other events that can be found on the Ovar’coming Together website [3].
You Only live Once – Young Survivors Group (YOLO-YSG)
Robin has had a young survivors group on her to-do list ever since some young ovarian cancer survivors expressed the need to have a group their own age. As a temporary measure, she decided to send them to support groups for other cancers (i.e. breast cancer) but the young survivors felt that they did not have anything in common. For my practicum project, Robin and I agreed that I help start a young ovarian cancer survivors group. During a meeting with other young survivors who happen to be past the treatment stage of cancer, I thought they would ask for a support group, but as it turns out, the need was for a networking group. We felt that family, friends, and caregivers would get tired of hearing us talk about ovarian cancer a year after the fact; after all, we are past it, we have survived! This group would give us a safe place to openly talk about our unique experience(s) with ovarian cancer because we focused on getting better when we were sick, but now, we want to reflect. We collectively decided to do “bucket list” activities, hence the YOLO nickname. Our first outing was ziplining at Eagle Creek Park and we are planning to go cliff diving, visit a haunted house for Halloween, SkyZone (indoor trampoline world), and a polar plunge! We will also meet up for dinner once in a while but I would love to hear any other suggestions you may have!! See the pictures below from ziplining!
This practicum experience has been crucial in my training as I saw how a non-profit organization runs on a day-to-day basis, from planning events to attending a Board of Directors meeting. Ovar’coming Together is the only ovarian cancer organization in Indiana that services the whole state, and it heavily relies on the generosity of donors and volunteers, many of which are ovarian cancer survivors themselves. There is a lot more to do and not enough money or people to do it all. Overall, I was very lucky to have been able to have spent my summer with Robin and Kelly at Ovar’coming Together and would highly recommend anyone else who is interested in cancer awareness and survivorship to go work with them in the future.
References
[1] “Survivorship.” Ovar’coming Together, Inc. Accessed 17 May 2014. http://ovariancancerin.org/Survivorship.html
[2] “What Are the Symptoms?” Centers for Disease Control and Prevention. Accessed 17 Aug 2014. Updated 10 Mar 2014. http://www.cdc.gov/cancer/ovarian/basic_info/symptoms.htm
[3] “Events and Education Calendar.” Ovar’coming Together, Inc. Accessed 17 Aug 2014. http://ovariancancerin.org/Event-Page2.html
References
[1] “Survivorship.” Ovar’coming Together, Inc. Accessed 17 May 2014. http://ovariancancerin.org/Survivorship.html
[2] “What Are the Symptoms?” Centers for Disease Control and Prevention. Accessed 17 Aug 2014. Updated 10 Mar 2014. http://www.cdc.gov/cancer/ovarian/basic_info/symptoms.htm
[3] “Events and Education Calendar.” Ovar’coming Together, Inc. Accessed 17 Aug 2014. http://ovariancancerin.org/Event-Page2.html