Down Part I.. The pain

As a healthcare provider, I look back and wonder how I didn’t see it. How I didn’t notice the obvious signs of decline or at least a serious illness in my dad. Perhaps because my dad’s life was filled with so much hidden pain that this new hidden pain was barely perceptible over the mask he already wore on a daily basis.
My dad retired in 2010. Thirty years after first working for the federal government in the role of some sort of budget officer or analysist. He was only 54 years old. And he didn’t retire because he had a desire to stop working or had a work ethic that was not pristine. He retired because he hurt.
He was crippled at home with arthritis. His gout got so bad that the knots on his fingers swelled so immensely he could not maneuver his fingers to eat or button up his own shirts. His knees buckled under his weight and he often used a cane to get around at home. His puffy, fluid filled feet no longer even fit in his tennis shoes, and when he did manage to get them on his feet, mom had to get them tied for him.
He could no longer take the grueling walk from the parking lot into the pentagon, yet he hid his cane in the back seat, drove to work largely thanks to cruise control and a prayer, and somehow limped his way inside without his coworkers ever finding out. He was a strong, strong man.
So he retired. He got a little bit fatter and a little bit weaker and a lot more stiff and pained. But my mom was always by his side to help with the little things he could no longer do and no one was the wiser.
The pain was so great, he could barely get up from the recliner chair most days, but he continued to be strong and stoic and took care of most of what needed to be taken care of without ever revealing his true misery to anyone. Fast forward to 2015. Dad was having stomach aches. Some indigestion and diarrhea. He went to his primary care doctor who gave him some fiber tablets and told him he would be fine.
We booked tickets to my graduation from my graduate program. Surely, dad would never miss an opportunity to cheer on and show pride for his little girl. But as the day grew closer, it became clear that dad did not intend to come. Not because he didn’t want to, but because he was embarrassed of his need for such frequent bathroom stops. So he did not come and he visited the doctor again who ordered some labs and more fiber and sent him on his way.
A few months later dad had trouble breathing. His head and neck swelled up to the size of a watermelon. His airway and breathing were quite compromised and even though he resisted he spent a chunk of time in the icu. The diagnosis, anaphylaxis related to some NSAIDS he’d been taking for quite some time.
And time marched forward. Dad’s arthritis got worse. The swelling got worse. He could barely move his legs and mom diligently wrapped them in plastic trash bags to catch the fluid that was forever draining out. The lumps on his fingers grew bigger and he had taken up an almost daily ritual of chopping these lumps off with a sharp, dirty pocket knife.
Fourth of July was always special to us. Dad helped with the fireworks. He employed his stringent fire safety rules. The wet wood board under the fountains. The five gallon bucket of water for the used up fireworks to be discarded into. The hose hooked up and at full attention, ready to strike at any given moment. But this Fourth of July, dad sat in a chair, somewhat distracted and did not participate in any of the festivities.
The belly problems lingered as well, and dad was finally able to get in to see a gi doc and have a colonoscopy. He was 58 and this was his first one. When they finally did it, cancer was found and had spread into many of his surrounding organs. The exam was aborted.
I’m not sure how it feels from going from healthy, or relatively so, to terminal in a matter of weeks, but I guess you only ever know if it happens to you. The cancer trajectory is rather predictive. There is a relatively long period of high functioning stability followed by an often rapid downward spiral where functioning and quality of life quickly decrease.
I always thought cancer might be the best way to die. You have a small amount of time to get your affairs in order that you do not have in sudden death. And there is not that slow, dwindling decline that is often seen with dementia. And there are not periods of nearly returning to baseline between intermittent episodes that is so often the case with cardiac and respiratory issues. But working with oncology patients for 12 years hasn’t been enough to show me cancer is no walk in the park. Dad illness had to hit me smack in the face.
There is nothing beautiful about dying from cancer. We are all dying from something but cancer just isn’t the way to go. I imagine how bad it must have hurt for him to be willing to take a knife and carve his flesh. I imagine how strong the internal angst must have been when he realized that if he had done the colonoscopy, taken care of his symptoms years earlier that the discussion with the doctors may have been focused on cure rather than palliation. Maybe I can’t imagine loving my family so much that I would be willing to suffer immense pain in silence and without support just to spare others some of that pain. I don’t know if you were hard headed or kind hearted. I just know that I love you. With pain or without.

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