Walking the Path of Life
I thought I’d have a little more time to talk about my medical condition with my 5 grand-daughters. My rare disease is hard enough for adults to understand, and the oldest of the girls is only 11. I have a pheochromocytoma and multiple paragangliomas– tumors that grow near nerve pathways in my body. They are slow growing and typically “benign,” although capable of metastasizing and/or secreting hormones that can result in stroke or heart attack. These tumors can destroy nearby tissue as they grow, affecting vital functions like breathing, swallowing, and speech. Fortunately, after radiation and surgery, mine are stable and non-secreting.
I’ve accommodated to the hearing loss in one ear and imbalance caused by my skull-based tumor. I also experience pulsating tinnitus, a constant “whooshing” sound in my head, due to compression of blood flow near my middle ear. To minimize this, I take medications to reduce my blood pressure. I also need background noise (TV or radio) when sleeping or in quiet environments to mask the noise.
I’ve never withheld my symptoms from the girls, but neither have I felt the need to elaborate on them. After all, I’m doing great. I’m up on the latest treatments and have the best specialists in Boston. With my oldest son’s urging to do cross-fit, I’ve come to terms with my body. I have actually never felt fitter.
My recovery involves advocating for my rights as a patient. I negotiate how frequently to scan for new growths, knowing the benefit of shorter intervals, but also the added exposure to toxicity or the unnecessary anguish they cause. I opted for radiation vs. high-risk surgery that might have resulted in loss of swallowing or breathing on my own. With this autonomy, I am able to accept my disease and the treatments I need.
And as with life, I want my death to reflect these values. I am comforted by the progress made by other states to allow individuals to choose a death without the pain or the indignities that may well face me at the end of my life. This is why I joined NHAEOLI, and why my oldest grand-daughter happened upon my bio on the Alliance’s site when searching her Meemee on line.
It was a blessing and great surprise to see how natural it was to discuss these issues as she questioned me about my role in the group, its purpose, and my prognosis. She was clearly able to tackle the difficult questions and their answers. No, I assured her, I am unlikely to die for a long time, and no, I don’t want to die, but when the time comes, I want to do so in peace and without suffering. We talked about standing up for what is important and working for change. Then this bright, articulate and fearless child hugged me tightly, and I could only marvel at how much she taught me about her resilience and capacity to understand and connect. I know we will continue to talk and grow together.