I meet hope head on by carrying on my husband Christian’s memory and knowing that his brain cancer journey, though difficult and full of waves – ups and downs, did not drown out the great person he was and the permanent mark he left.
My husband started his journey at age 45 with several unusual phantom smells over the course of a couple of months, a grand mal seizure that caused a fall down our basement stairs, followed by a 3-month journey of tests, 2 brain surgeries and eventually, a diagnosis of a grade 2 Astrocytoma. His 2-year journey of treating and living with his brain cancer was difficult, but he, our son and I were surrounded by the love and support of his care team at the cancer center, our amazing friends and family, and our community. He, sadly, succumbed to his disease, as it spread and grew into a larger grade cancer.
He fought bravely the entire 2 years. Although he faced deficits and decline, he never gave up hope and often had a smile on his face throughout his journey. He passed away on May 19, 2019 and is forever missed and remembered. I often compare the brain cancer journey he went through – and what our young son and I went through with him – as a series of waves. This is what I wrote shortly after he passed away, and how it felt, and continues to feel, as we traveled the brain cancer journey: “A disturbance on the surface of a liquid body, as the sea or a lake, in the form of a moving ridge or swell.” “A sudden occurrence of or increase in a specified phenomenon, feeling, or emotion.” “An unstoppable force.”
Waves. The surge/tsunami. A sudden, huge seizure, out of the blue, causing an uncontrollable fall down the basement steps. Feelings of extreme fear, panic, drowning and end of life. The ripple. After the shock of the seizure tsunami, the ripples of subsequent hospital visits, biopsy, tests – stretched over 3 months – worrying and trying to find a diagnosis. Another surge. A 2nd biopsy and the weight of a diagnosis: a brain tumor, brain cancer. The tide. The rising and falling of the treatment process – radiation, chemo, weekly blood draws, bimonthly infusions, MRI visits every other month. Ongoing fear. Periods of calm – weekly labs becoming routine; forming positive connections with doctors, nurses and hospital staff; hope that the tumors will shrink and then observing that the tumors indeed have shrunk significantly.
The swell. After a period of stability, tumors start to change/grow inside his brain, starting to expand over to the other side of his brain. Platelets dropping, chemo and infusions no longer stopping the tumor growth. Trying to maintain feelings of hopefulness, while being knocked down by waves of fear, sadness, and hopelessness. Another surge. Ending treatment, starting home hospice. Pounded by daily struggles when dressing, eating, walking, relating, being. A tsunami of change, loss, sadness. Moving away from home to inpatient hospice – flooded with sadness and fear of the end of life. Then, surfacing, emerging out of the flood – breathing, relief, accepting.
Shallow waves. Moving closer to the end. His breathing sounding choppy, difficult … then slowing down … slowing … the last, long wave/breath … then … the waves stop. … the ripple, swell, surge, tsunami …. waves of grief/loss – swelling, hitting at unexpected times, then slowing, the tide. Until the next surge, then tide … life continues.