It’s been six years since our mom, Marsha, passed away. By the time she passed she had achieved so much, overcome so many odds, collected a stadium full of friends, and been an amazing daughter, sister, and mother. However, a few themes always persist to us and the many lives she touched - she was a loving, kind, witty, and smart teacher and advocate.
When our mom was 42, she went to bed one night expecting a normal day that following morning. She’d been a stay-at-home mom for a few years and was running a scrapbooking business out of our basement. Knowing her, she was probably thinking about us kids, the tasks she wanted to get done the next day, and prepping food and supplies for her Friday night scrapbooking parties (just think of 10-15 women drinking margaritas, listening to Prince, chatting away, all while crafting beautiful memory books of their families – it’s as fun and wild as it sounds). But that following day, she woke up with crossed eyes and double vision. She didn’t seem to be stressed at first, more just confused by the sudden change. She wore an eye patch to see more clearly, and to make us kids more comfortable, she joked about it, and we called it her “Patchy the Pirate” costume.
She booked a few appointments with her primary care doctor and the eye doctor, which just lead to more questions and more appointments with specialists. Some diagnosed her with MS, Lupus, and various eye conditions, yet none of those diagnoses sat right with our mom. As a former analytical chemist (before her stay-at-home mom days), she wasn’t satisfied with "maybes" or ill-fitting assumptions about her condition: she wanted scientific proof. So, she sought out a few more doctors and opinions. It was at this point that she learned – and then taught us – an extremely valuable lesson: be your own advocate. While your doctors are highly educated and specialized, and your family and friends will support you, YOU are best suited to lobby for the results, service, and care you deserve.
A few weeks later, after finally getting in touch with a neurologist who believed our mom, that it was something more than the previous diagnoses and more tests were required, an MRI was conducted. The results showed a walnut-sized mass, wrapped around the carotid artery, pressing against the optic nerves, sitting in the pituitary region of her brain. At that point, they knew they’d found the truth and the culprit. It’d take a few more months and a surgery before we received the new and odd diagnosis of a clival chordoma.
With that, our mom was gathering a team of specialists who would stick with her throughout her journey, and who would help her advocate for treatments and care. We’d be remiss not to thank Dr. Troy Paynor (currently with Goodman Campbell Brain and Spine, Indiana) and Dr. Allan Thornton, Jr. (Proton Doctors Professional Corporation) for their dedication, as well as impeccable skill and work with our mom, and for their compassion to us kids. They were there for her at the very beginning and stuck it out with us kids even after her last day.
A year or so into this journey, and in need of some additional income to pay for medical bills, she decided to return to work full-time. She enjoyed being on the same schedule as us kids, so she began working as an instructional assistant at our local middle school for English language learners. At this point, she clicked with her calling - she wanted to be a teacher. She was always a teacher to us, those who came into contact with her, and the kids in Sunday school, but she felt called to do it professionally as well.
Amid ongoing treatment, she enrolled in a transition-to-teaching graduate school program at the University of Indianapolis. In two short years, she was done with school, passed her exams, and was teaching chemistry and physics to high school students. As many teachers will tell you, it’s a tough job, but it has bright pockets of being rewarding. She loved it, her students loved her, and this ultimately inspired the youngest of us three siblings (Sara) to follow in her footsteps to also become a high school teacher.
Circling back around a bit, her first surgery to remove as much tumor as possible around the carotid artery and the proton therapy seemed to be a success. Of course, as a person with a teaching spirit, and at a teaching hospital, she had many medical students and curious medical professionals following her case. We had several white coats in the room everywhere she went. She always had the attitude of the more the merrier, everyone needs to learn, and it might as well be on her. We knew chordoma (back in the early 2000s) was still in its infancy of being understood. Then and now, we continue to hope that the lessons learned from our mom’s case will help others with chordoma, or those studying chordoma, with treatment and care options.
Unfortunately, after three years of no new tumor growth, her eyes started to cross again, and she was back to square one. This started the routine of surgery intervention every few years, sprinkled in with radiation treatment. Over 12 years, our mom would have seven surgeries, two rounds of proton therapy, a round of gamma knife radiosurgery, and much travel between Indiana and Virginia for care. During that time though, our mother lived a full life. She continued to raise us, teach, go to church, scrapbook, travel, and spend time with friends and family.
Up until the last two years of her life, she taught professionally, loving the work and the kids. Ultimately, her tumor required more frequent treatment and intervention, and her energy needed to become focused on healing and resting. These two years were the hardest. Dr. Paynor and Dr. Thornton advised us that treatment was becoming more difficult, more unprecedented, and riskier. With this, they tried one more surgery and another round of proton therapy. At the time, no one really knew what the results of a second round of proton therapy would have on a chordoma tumor and the surrounding tissues. Our mom was willing to try anyway, to progress the learning, treatment, and understanding of chordoma, and often told people she can’t give up, she has kids to raise.
During the start of that final year, we were extremely hopeful. This round of proton therapy treatment had been more difficult on her body than the first round years prior. She’d been alone in Virginia (except for the odd weekend we could get off work or school early on a Friday and drive over) struggling with the roughness of treatment and the toll it can take on the body and missing us kids who were scattered back in Indiana. When she came home at the end of treatment, we were joyful, ecstatic even. Surgery and proton therapy had given her years in the past, and we’d thought we’d get that this time too. A few months later though, she awoke early in the morning with an aneurysm of the carotid artery. The tumor had eaten away at the artery, and radiation had weakened it further. Dr. Paynor and his team worked for hours and were able to patch the aneurysm, but she’d suffered several strokes and her recovery was uncertain. For a month we would remain at the hospital monitoring her condition. Though limited in speech and movement, we thought there could be a glimmer of hope for more recovery, and she was transferred to a rehabilitation center. After a month and a half at the center, she had a second aneurysm that claimed her life.
Our mom wasn’t just incredible to us, but also to her friends, family, students, and others in her life. During her treatments, and when she passed, we always had an outpouring of support from her friends and members of the church she attended. Although an introvert, people recalled to us how she made people feel welcome, taught enthusiastically, had an unexpected sense of humor, and seemed to have much more energy than someone battling cancer and raising three kids as a single mom should. Our memories of her teaching us to “be our own advocates” in a myriad of situations are not a rarity. At her funeral, friend after friend recounted her inspiring them to be more active in the path of their own lives and her students recounted her passion for teaching and science.
Still to this day, our mom is a teacher and an advocate. We remember her words of wisdom, life lessons, and passionate heart. We hope others diagnosed with chordoma can learn from our mom’s experience and will advocate for themselves to receive the treatment they need and the care they deserve. We hope family members and caretakers like us stay involved in their loved ones’ treatment, educate themselves on their needs, and are comforted that they have a community of us willing to help and support them. We kids feel blessed to have had our mom longer than the ten years the doctors initially gave her. She was able to be the best part of our lives for 23, 20, and 16 years, respectively. We hope others who she impacted continue to talk about her and share her memories so the world can continue to benefit from the life of Marsha Ann Hopkins Zimmerman (01/01/1963-10/02/2016).
We love and miss you, Mom,
Andrea, Nick, and Sara
Thank you again to Dr. Paynor and Dr. Thornton, to our family, friends, bosses, and the Lifepoint Church for the support during and after her life, and to Brooke’s Place for providing us a space to grieve after she passed.
