Reading my mother’s treatment journal is a weird experience because I realize I wasn’t really there for any of it. Physically, I was industriously planning a wedding and a new life two states away. Emotionally, I was living in a world under the swell of sickness, death, and emotion. When I saw the wave coming I dove underneath instead of standing to face it with my mother and my family. We all have regrets and swimming away from my mother’s death is one of mine.
Now, reading my mother’s treatment journal is like hearing an unfamiliar story. I can recall where the narrative’s events intersect with those of my own past, although I feel these moments are too few and far between. I am ashamed to admit now, my fear led me to take a bit part in my mother’s final year when I should have been playing a supporting role.
According to her journal, my mother went to the doctor on a Thursday in October for her regular blood pressure check. During the visit she told her doctor she was experiencing severe indigestion which felt like complete and total upper body discomfort, whether she ate or not, night and day.
My sister remembered her complaints starting in the summer, which seems about right to me because I recall her talking about the constant pain sometime around early September. According to my mother’s journal she waited the whole summer to say something to her doctor because she didn’t like “throwing too much at him”; a decision she later regretted because of how long she let the cancer grow. It’s impossible to know if anything would have changed had she said something sooner; part of pancreatic cancer’s lethality is its sneakiness and, like my mother, most people don’t know they have it until it’s too late.
It took several appointments and procedures before her doctor could tell her what was going on, and of course he never clued my mother into his tentative diagnosis. Although she sweetly downplayed her suspicions of him, she felt it warranted a ‘double hmmm’ when a normally sullen and closed off man called her days before her scheduled CT scan to ask her ‘how she was
doing‘ and to suggested moving the test up a few days.
Tuesday, October 25th:
Preliminary Diagnosis – Pancreatic Cancer
Friday, October 28th:
A liver biopsy
Saturday, October 29th and Sunday October 30th:
“A horrible weekend”
Monday, October 30th:
“I went to work on Monday. John, who had cancelled his ‘Merry Widow’ in Indianapolis (an absolute first for him) stayed home to answer the phone. He and Sarah came running out the door when I pulled in at noon. I thought it was good news. “
“It was the worst news – shock disbelief – the kids each call 3 or 4 x a day.”
I was leaving a night class when my Dad called. He didn’t have to say a word, I could tell by his voice. I’ve heard that voice only one other time in my life, when my brother got in a terrible car accident; now every time I answer a call from him I feel a slight twinge of fear I’ll hear it again. I remember the exact turn I was making when my father gave me the news – Charles Street to Northern Parkway – “Nonnie…it’s the worst case scenario…it’s pancreatic cancer.
I can feel the pit in my stomach just thinking about it, it’s the one you feel when you know something horrible has happened and there’s no way out. This is probably not why they call it a ‘pit’, but the analogy works for me.
The days afterwards we’re a blur. My father and my siblings busied themselves scouring the internet; reading about the disease, the odds, and searching for miracle treatments. Days of scurrying, reaching out to contacts at this trial and that, phone calls with the insurance companies, deciding who should be where and when. My mother just wanted someone to tell her what to do. She stopped playing the piano, stopped flipping through Christmas catalogues, and struggled to make sense of things.
My mother’s handwritting flows across the page as if she we’re writting in a row boat on a rocky sea,
“I really believe God already knows the outcome if it’s bad. I’d like all the prayers to change his mind. I’m still needed – my income – my help when Flo’s cancer gets out of hand…I want to help Jessie when she delivers those twins. Heck! I need to see those twins. I want to see Sarah’s children. I need to be with my Beth – she’s still too young for this.
There are blessings – John loves me so and he’s dropped everything for me. The kids have rallied. He needs them so and I think my starting to study the Bible this summer was no coincidence….But what do I know about Gods plan? But I know he has one.”
Friday, November 4th:
Official Diagnosis: Pancreatic Cancer with Liver Metastasis
Tuesday, November 8th would be her first Cancer Treatment and in between there we’re still more conversations and decisions. My mother felt empathy for her poor doctor although she called him her fatalistic family physician. I feel bad for him now too, put in the position of being so frank and honest, but at the time I hated him – hated him.
He told my mother to give up hope, to stop taking her blood pressure medication because really, what’s the point? Told her not to worry about getting hooked on the narcotic painkillers because, in all honesty, she wouldn’t be on them very long.
‘I know he believes I’ve got 6 months to live and shouldn’t spend them hurry scurrying around away from home and family looking for miracle treatments.”
I remember thinking he should just hang up his coat and stethoscope right there. Of course there is still hope. Of course she should try! He watched as the water rushed in and started to carry her away from us. He didn’t even try to to throw us a life preserver. Why would he do that? I understand now.
With treatment, my mother lived a little less than 12 months after the diagnosis. She spent that time with her family, she found a deeper connection with her faith, she saw grandchildren born, but she was also very sick and the treatments made her sicker. She didn’t want to die and, although she was hopeful, she knew the odds were against her. These are the parts of her journal I have not yet been able to read. Once again, I dive under the wave and swim.
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