I always try to prepare myself for a new admission. Reading over the notes and reports, a plan starts to take shape in mind, even before I have my first visit. Plenty of times, almost as if it were habit, autopilot kicks in. CHF? Oxygen, morphine, diuretics, meds to increase the strength of the heart’s contraction…. you get it. Try as I might, I can’t seem to avoid doing that. But, there is one diagnosis where all of the above becomes untrue. One that makes me slow down and causes my heart to quicken….
Glioblastoma. For my non medical friends, it’s one of the nastiest cancers you can be unlucky enough to be diagnosed with. A brain cancer, which is often diagnosed in the more difficult to cure stages, because that’s when symptoms begin to arise. Median survival time: 12 months, if you are lucky. The chemotherapy is awful and the surgeries are brutal. The pressure on the brain causes swelling which lead to seizures. It is so gut wrentching because despite advancements with other cancers, glioblastoma remains so lethal. Personally, reading it as an admitting diagnosis takes my breath away because it is what claimed the life of my father.
It was my first real experience with cancer. My first bitter taste of mortality. My dad had been the type to never get sick. He never smoked… he drank alcohol only on days that don’t end in y (which is to say never)… he was a pescatarian (only ate fish) and he was active. He started with headaches. Then, odd behaviors. Not too long after, an MRI revealed the orange sized tumor in his brain. 14 months later, as we were helping him back to bed, he began to have a seizure… it just so happened that my mom, my brothers and I were there. He seemed to look at each of us as his body writhed and took his last breath. The sound of my scream from that moment is often so loud, that I have to wonder if it is just in my memory.
She was a kind woman, with the most honest eyes..and her admitting diagnosis was glioblastoma. As I continued to skim over the information, it was clear that she was pretty healthy before this silent invader. Just like dad. These similarities would present themselves so many times… Could it be that it was coincidence…?
It’s the family and loved ones.. the journey they are taking.. The feelings that are unspoken but seem to come bounding back as if it were not 17 years ago, but rather yesterday. Of course, my heart aches for the patient. But, as I have only been a caregiver/family member in this situation, the true bond of understanding cements my relationship with the families.
The feelings of helplessness as your loved one suffers. The hope – that never seems to dissipate of a remission. The prayers that the end will be peaceful. Moments where the feelings overwhelm and feel as if they have engulfed your entire existence. Waking up in a panic because you actually slept and were afraid of missing a moment. The role reversal… from cared to caregiver.. from being reassured to reassuring…from broken to shattered.
My sweet lady had an amazing family. She was so loved and not for a second could she doubt it. From all the beautiful flowers, to the overflowing glass bowl of candy, family never let her forget that she was foremost in their hearts. For a good while, things remained slow and the symptoms minimal. The uncertainty on their faces.. as if to be scouring my own looking for answers. Ones I didn’t have… when would it happen? How? God never clues me in on those.
Each sting of heartbreak. Each sigh of relief. Each feeling of guilt because although you don’t want the patient to pass, you know there will be a resolution. We crave order.. when we see that living becomes more painful than our own loss, letting go becomes our prayer.
My patient’s body began to betray her. Medications were being adjusted often. It was one such moment that again caught me off guard. Calling the pharmacy for a refill, the pharmacy tech asked for the birthday. As I voiced out the day, month and year, I froze. Her birthday … day, month… year… my father’s birthday. Exactly the same.
Her final journey was peaceful… her amazing family kept vigil. With each day, I would try to explain how this was just like labor… you could have a plan but so does the universe, so expect the unexpected. Mornings I would wake and scan my phone to see if she passed over night. I found myself lost in the memories. Lost in those feelings… the bitter battle of wanting her suffering to end and the guilt that blankets the soul. Have walked in their shoes. Those feelings. The ones that would cause me to cry silently after my visits.
When time drew near, my visits lasted longer. I found myself not wanting to leave. I held her hand and would brush her bangs off her face. Would sit with family and silently will them strength and peace, as their journey was one I had already traversed. Praying quietly that her end would be soft and silent.
It eventually came… it was soft and silent. Fighting back tears there were so many memories breaking through the dam in my mind. Seeing them cry… knowing the hollowness they felt as they surrounded her bed. All I could think of was my dad.
As I pronounced…looking for chest to rise, feeling for the river like flow of her veins.. listening for the familiar song in the chest… but, she was without all. “What is the official time, Helen?” It was 1308. Only when I sat down to fill out forms did my heart race again… 1308. The exact time someone else’s death… my dad’s.