While October is famous as Breast Cancer Awareness Month, did you know that September was Ovarian Cancer Awareness Month? Today we welcome fellow type 1 Donna Tomky in New Mexico, a well-known diabetes educator who has also lived through her own diagnosis with ovarian cancer. We're grateful that she has agreed to share her story with 'Mine readers.
A Journey to Peer Support, by Donna Tomky
Who needs emotional, physical, and spiritual support? The answer is everyone!
The day I was born I needed someone to care for me. Usually my parent(s) were there to provide emotional and physical support. I was lucky to grow up on a Colorado family farm with two brothers and a sister. Growing up on a family farm made us close as we worked towards common goals. Extended family members also lived close by, providing support and memorable gatherings throughout my childhood, teen years, and adulthood. Spiritual support came in the form of Sunday School and church, only to discover more expansive spirituality later in life.
It’s been almost a half-century since I was diagnosed with type 1 diabetes (in 1975). In those days, all newly diagnosed patients with diabetes were sent to the hospital for treatment and education, even though I wasn’t in diabetic ketoacidosis or critically ill. However, my blood glucose was near 500 mg/dL, so my doctor started me on the usual care of one injection of Lente insulin a day. No self-blood glucose monitoring, insulin pumps or continuous glucose monitoring technology therapies were available. The only available option for a “quick” glucose check was drawing ”stat” plasma glucose with results reported 1-2 hours after the fact. During that hospitalization, I had my first hypoglycemic event, an experience like no other—suddenly feeling shaky, sweaty, hungry, and having palpitations only to feel my mind being totally confused as to what was happening. It was reassuring to get on-site support in the middle of the night from nurses bringing in a can of orange juice. The next day, my doctor told me it was a good thing that I had experienced an “insulin reaction” in the hospital, as it taught me how I might feel when my blood sugar became too low and learned to treat myself.
There wasn’t much education in those days except learning diabetes pathophysiology, prescribed diet, how to inject insulin, and hypoglycemia recognition and treatment. Self-blood glucose monitoring wasn’t even on the market. Besides, it was strongly believed most people died of nasty complications approximately 20 years after diagnosis.
I dutifully followed my internist's instructions to return for a six-week follow up visit after being discharged from the hospital. He asked the usual questions about how much insulin I was taking, if I had any insulin reactions, and what were my morning urine glucose test results? He was satisfied with my answers and gave me instructions to follow up with him in a year; and of course, I could call him if I had any trouble. To this day, I’m not sure what he meant by that last statement. He effectively said, since I was a registered nurse, that I "probably knew as much about diabetes as he did." Wow, did that sound strange!
A Lonely Life with Type 1 Diabetes
Thinking back to those years, I felt very isolated and depressed to be floundering for information and support. I really didn’t know whom to turn to for support. It seemed like the pervasive attitude by so many people was “ignorance is bliss." Only later after becoming an adult nurse practitioner, moving to Chicago, and working for a kidney transplant team did I realize how scary it was to be “on my own” managing my chronic illness. People did get and die from diabetic complications. My significant other at the time, a surgeon, thought I was crazy for wanting to specialize in diabetes to help others – he thought it would be “too depressing." Obviously, we had different opinions of what I needed and felt others needed as well.
In 1981, I moved to Salt Lake City, UT, to live with my sister. I arrived in August just in time for a regional nurse practitioner conference held at Snowbird ski area. I decided to listen to a local and respected endocrinologist, Dr. Dana Clarke, give a presentation on “New Diabetes Discoveries." Those discoveries at the time were human insulin, self-glucose monitoring, and insulin pump therapy. Although those devices were big and clumsy compared to today’s technology, it was the first time tight glucose control was achievable. Also, I knew intuitively those new therapies were important for better health and longevity. I was an “early adopter” and started using these devices 12 years before the (landmark study) DCCT results changed the standard of care for type 1 diabetes. Dr. Clarke soon became my physician and employer after attending his presentation. Being on the cutting edge of treating my own diabetes, I began learning that peer support was an essential component for being physically active and pushing the limits as much as possible while living with diabetes. I was so grateful to meet other people with type 1 diabetes through my practice as a nurse practitioner and diabetes educator under the mentorship of Dr. Clarke.
Over the next couple of years, a small group of Dr. Clarke’s pump wearers formed a social network by sharing the love of the outdoors in Utah. We had our first introduction to the harsh reality of wearing a rechargeable insulin pump and hiking for 3 days in the high Uinta Mountains after Labor Day. Keeping batteries charged and preventing insulin and blood glucose strips from freezing required sleeping with them at night. Dr. Clarke was our leader, mentor, and teacher. We learned about the sustained glucose-lowering effect of physical activity by doing it. During our camping trips throughout the next 10 years we always knew someone would likely become hypoglycemic during the day or night with our mutual support readily at hand.
As a novice diabetes educator, adult nurse practitioner and pump wearer, I set a goal of continued professional training about diabetes. I started advancing my knowledge by joining and attending my first AADE (American Association of Diabetes Educators) meeting in 1983. Many of the diabetes educators had diabetes, but not all disclosed their chronic condition. The ones that did so amazed me and I had immediate respect for them. I was especially grateful to learn from people with the same chronic condition. I also developed a friendship with a woman about my age with type 1 diabetes. It was a huge discovery and a blessing to finally get one-to-one peer support.
In the early 1990’s, I was exposed to my first computer—what an exciting discovery! I established an Internet account after marrying my “tech savvy” second husband and software engineer, Bob, 25 years ago. The Internet was not in widespread use at the time I was diagnosed with T1 diabetes. Social media as we know it today wasn’t even a concept, except in behavioral research labs. My early attempts at using Facebook were faint at heart, as I establish an account to view my nephews’ and nieces’ posts. I would occasionally read a few posts on social media in the mid-late 2000s, when I needed self-guidance or verification about something related to diabetes. By then, social media and information via the Internet was coming of age!
Ovarian Cancer Turned my World Upside-Down
Then in December 2016, my life was shattered again as I was diagnosed with Stage 3c ovarian cancer. All of a sudden, I became very ill and couldn’t work. I felt like I had abruptly abandoned my diabetes patients without a choice. My plan of retirement came nine months earlier than intended and our extensive travel plans were placed on hold. My new normal became a world of chemotherapy, fatigue, and uncertainty about the future. I was grasping for information, any way possible, and soon realized I needed more then just my gynecologist/oncologist and infusion nurses. I needed a TEAM of healthcare professionals and peer support! Fortunately, I found that TEAM at the University of New Mexico Comprehensive Cancer Center. I not only have a great Gynecology/Oncologist with M.D.s, physician assistants, and nurse practitioners, but also a full team of nurses, health navigators, social workers, psychologists, and peer support groups.
Besides having a competent medical-surgical team, I also needed ongoing mind, body, and spiritual support from past, present, and new friends as well as from my family members. My “ah-hah” moment to seek out online social media peer support groups came a few months before engaging in local support groups. My reluctance to attend local support group sessions stemmed from my fear of infections from chronic chemotherapy. That fear was realized when I let my guard down five months after beginning treatment and landed in the hospital for 11 days. My mortality had starred me in the face! So I kept my guard up, and became paranoid of serious infections that kept me close to home, reticent to travel and associate with friends, and not attending social functions of any kind…ugh!
I then became curious and knew I wanted and needed support from others living with cancer. I found my first social media support group by simply “Googling” search words of “ovarian cancer support." It was so easy! My first peer-to-peer support group find was the “Ovarian Cancer Teal Warriors” using social media through Facebook. I liked the group’s guidelines about posting and felt reassured about my privacy. Only women with ovarian cancer, or occasionally their significant caregiver (usually) a daughter or spouse/partner can post to the group. Caregiver posts are common when things aren’t going well for the person with cancer.
At first, I was timid and only observed many brave souls posting concerns or questions before becoming confident to write a reply or post my own questions. I learned to ask appropriate questions for my edification and abstain from assuming the role of giving medical advice. Besides, I am not an expert AND I know everyone is unique in their staging of ovarian cancer, age, co-morbid conditions and resources. My real reason for seeking out this group was to understand how other women lived and thrived, or did not, with ovarian cancer.
I soon found out that some of the posts were technical or needed individualized evaluation and answers by their oncology team. Others engage by sharing their positive or negative experiences. Some share spiritual uplifting messages. The thing I like about social media is I can chose to read or delete the post at my discretion. I so appreciate reading the supportive and thoughtful “replies” from members. As my treatment and experiences are changing–my need for discovery of other cancer peer support has also changed. I recently joined a PARP-inhibitor (a new medication for ovarian cancer) peer social media group to learn more about other’s experience compared to my own.
It is challenging for me to keep positive knowing that ovarian cancer may be the medical condition that causes my death. I feel blessed to have lived 43 years extremely well with type 1 diabetes. I wonder what my life would have been like if I hadn’t? Through the online support groups, I read about long-term survivors of ovarian cancer, very young women afflicted, women in hospice and others who have earned their “Teal Wings” or passed. We call ourselves the “Teal Warriors” as teal is the color for ovarian cancer and we all fight using surgery, chemotherapy, radiation, with newer discoveries coming out every year. Some women are extremely lucky and go into remission after 6-8 months of treatment with most having recurrence in a few months or years. Basically ovarian cancer survivors have very little input about treatment options, unless a person decides to opt out of medical treatment altogether. However, I’ve decided that in spite of my chronic conditions, it is important for me to continue living and enjoying each day to it’s fullest.
I’ve become much more passionate about peer support groups since my ovarian cancer diagnosis. I’ve always known, but realized even more that peer support provides an important aspect in living with chronic conditions. Quality of life is as or perhaps even more important than quantity. Most of us want to experience feelings of normalcy and acceptance, build our knowledge, avoid isolation, enhance empathy towards others, and continue to hope for the best. It takes hope, love, and strength to live with any chronic condition!
Dr. Kate Lorig and her colleagues’ from Stanford School of Medicine were pioneers in researching self-management peer support. Her research has focused on the development and evaluation of self-management programs for people with chronic diseases. I am proud to have served on the 2012 Diabetes Self-Management and Support (DSMES) Standards committee. At the time, members wanted to emphasize “Support” as peer support was coming of age. So we added “Support” in the Standards title. In my opinion it takes an “All hands on deck” approach by heath care professionals, peer support groups, friends, and family providing management, education and support for those of us living with diabetes, cancer or any other chronic condition. So at this point, I continue my life’s journey of evolving challenges and forever grateful for weaving peer support into my medical care.
Thank you for sharing your story, Donna!