It was a Sunday in October, the day after our son’s 25th birthday. My husband, Aaron, and I had decided to visit Ohio’s State Nature Preserves, all of them. I was trying to get him motivated to go visit another one. All day Saturday, he sat in the living room, drinking beer and eating cheese and crackers, and now Sunday was looking like more of the same. Feeling a bit put out with him, I watched him saunter down the hall.
A minute later I heard, “Mary, come here! ” Probably sees a buck outside, I thought. I made my way to the bathroom, where I found Aaron hanging onto the countertop for dear life as his right leg shook uncontrollably. Then he crashed to the floor, taking everything on the counter with him. So began our new life of doctors, hospitals, radiation, chemo, medications, wheelchairs, sleepless nights, emotional roller coasters, and Aaron’s eventual transition from this life some twenty months later. We were advised this was our new normal. And sadly, so it was.
If only I could go back to that day in October, knowing what I know now. Isn’t this what we all want? A do over, a second chance to choose and react more wisely? We learn many things along this journey that is life, and sometimes hope and pray we never need this knowledge again.
Back then, 3 1/2 years – or a lifetime – ago, I naively assumed doctors generally knew their stuff and would give sound advice, with the patient’s best interest in mind. They are, after all, highly trained professionals. I learned the hard way that some doctors do not take the Hippocratic Oath all that seriously. Others are wonderful and have a true gift of healing – within the limits of available treatments. The trick is figuring out which one is which.
The seizure in the bathroom led to the ER in a local hospital. Aaron would have been far better off if we’d just walked out of that ER that night. A physician’s assistant told us it was not a seizure because Aaron never blacked out. The neurologist on call attempted to discharge Aaron before even reading the CT scan. These were red flags. But Aaron was admitted to this hospital, admitted into “a three week medical misadventure”, as one nurse so succinctly put it.
We learned our family doctor no longer did rounds in this hospital, or any hospital. We found ourselves on our own in a sea of hospitalist doctors and surgeons. No one seemed to be in charge or to agree, it appeared everyone communicated via electronic chart posts. Medical options were presented as “rush rush” and based on diagnostic speculation. I ignored my gut feeling about an overzealous thoracic surgeon and did not stop him from operating on my husband. If I could go back and change just one thing, that would be it. He removed Aaron’s thymus, and badly at that, nearly killing him.
Surgery to remove a thymus is very much like open heart surgery. Aaron, of course, had a primary brain tumor. His thymus was unusually large, but it was healthy. I now know there are plausible and available ways to better assess the condition of the thymus before opening a person’s chest, but this surgeon boldly lied to us about this. Aaron’s suffering from that surgery and the three weeks of painful in-patient corrective follow up procedures still haunt me. I believe the trauma he experienced in that hospital further shortened his life.
Aaron and I were in shock and ill equipped to think clearly while listening to diagnostic guesswork from too many strange doctors. In hindsight, I know that I should have listened to my gut feelings. It was a primary brain tumor, pure and simple. To this day I cannot understand why this was so hard for all these learned minds to figure out. I now fully understand that bad hospitals and bad or incompetent doctors really are out there.
After about a month at home, Aaron recovered enough to travel two hours to the Cleveland Clinic, where in January 2011, he underwent a craniotomy. The tumor that didn’t grow for two months suddenly grew explosively. His excellent doctors at the Clinic cautiously managed treatments that could not cure him, but could help him, and sometimes did, for a while.
I was truly humbled by the generosity and kindness of many friends, family and co-workers who selflessly helped us with everything from pet care while we were away for seven weeks of radiation, to weekly deliveries of fresh vegetables for juicing, to donating leave time to me at my job. Online groups for caregivers of brain tumor patients were an enormous help to me, and still are. In these groups I learned many things, including that bizarre, callous and unkind treatment of the patient’s primary caregiver, often by in-laws and step-relatives, is shockingly commonplace. I experienced a little of this myself. Perhaps some – who love the patient but are not the primary caregiver – cope by making that primary caregiver a scapegoat for the terrible circumstances of the illness. Perhaps we are too vulnerable, or perhaps we just learn who our friends really are. I don’t understand it and probably never will, but I have at last accepted it.
I did know a few things though, that really helped. Long before October 2010, I learned about living one day at a time, and this is what we did, Aaron and I. We did our best to enjoy each day, however and whenever possible. We danced with each other in our living room; me on my feet, he in his wheelchair. We talked about grace. We decided early on that Aaron was the decision maker in his treatment, and I was the researcher. I gave him my absolute best during his illness, and our love grew stronger and deeper. Taking care of Aaron was very challenging and totally exhausting at times, but I would gladly do it all over again, if only I could. If only.