The final mystery: Death without diagnosis
definitive diagnosis


When I asked the funeral home director about obtaining an autopsy for my mother, I was met with a long, uncomfortable silence, as if I had asked about arranging a cannibal feast with my mom’s corpse as the main course.

“Do you really want to do that,” he asked, incredulity creeping into the placid tone required of funeral home directors.

Yes, I did want a satisfying ending to the final chapter of my mother’s life. Yes, it was likely that the colon cancer had returned. But how come the litany of tests she had performed over the last several months had shown no signs of cancer?

The hospice nurse was a bit more understanding about my need to know what killed my mom. She then asked me an intriguing question. “What would you do differently if you had a formal diagnosis?”

After watching Alzheimer’s slowly rob my father of his brain, I had genetic testing performed and found that I do carry one copy of the APOE e4 gene, which is believed to increase the risk of developing Alzheimer’s, according to the Alzheimer’s Association.

My mother’s oncologist assured me that because of Mom’s age when diagnosed with colon cancer (75 years old), and no previous family history, the colon cancer was likely just a random misfortune, and not due to a genetic predisposition.

Even if I’m to assume that I’m facing either Alzheimer’s or colon cancer in my future (in worst-case scenario I could end up with both), as the nurse asked, what would I do differently?

I am already pretty darn healthy. I walk every single day, usually at least 2 miles per day. Because I have celiac disease, I already have to watch my diet. I strictly adhere to a gluten-free diet, and have done so for over a decade. I mainly consume a Mediterranean diet, eating a lot of salads, fruit and seafood. I don’t drink sodas or eat fast food, but I eat bacon and steak a few times per year. I don’t smoke, but I do enjoy alcohol and have a bit of a sweet tooth. Am I willing to adhere to a vegan, raw food, alcohol- and sugar-free diet for the rest of my life?


So if an autopsy wasn’t going to directly change my future, why was I so intent for my mother to be sliced open and the mystery of her death to be officially solved?

An autopsy could have determined if the cancer had returned, or if had spread beyond the colon. It also could have put to rest a lingering suspicion that my mom’s sudden, acute symptoms were not cancer-related at all, but some other ailment that was treatable, if she could only have been diagnosed in time.

But, as the funeral home director clearly outlined, an autopsy would be very expensive, and would only offer a very basic overview to determine a cause of death. There would be no deep dive into underlying conditions. The examiner would simply cut into my mother enough to determine a cause of death, and stop there.

So the autopsy would have mainly been to assuage my lingering guilt that I didn’t do enough to help my mother over the last year of her life.


You can’t really put a Band-Aid on pain, as it is both invisible and omnipresent. It is felt with every movement and breath, yet cannot be observed like a bruise or wound.

Yet we had no choice but to continue trying to slap bandages on the pain, because we kept being passed off from doctor to doctor like a hot potato. Mom’s surgeon suddenly moved out of town. It took a month or two to find a replacement, and then Dr. Newbie’s calendar was overfilled with patients. On the day of my mom’s first scheduled appointment with Dr. Newbie, his wife had a baby and he abruptly canceled all appointments. So that appointment was rescheduled, but there was a mix-up, and either my mom got the date wrong or the doctor’s office did. So the appointment had to be rescheduled again, and this time, a big snowstorm moved through the area, and the office was closed the day of my mom’s appointment, while she was stranded in her condo, the steep road impassable.

This runaround went on for months, literally. Mom was becoming weaker, the pain more persistent. She was eating less. She was tired, and getting past the point of hope. She was tempted to just skip seeing the surgeon altogether. Finally, on one of my visits to see her, we finally saw Dr. Newbie.

It was a total disappointment. The unbelievably young-looking surgeon never looked at or touched my mother’s distended abdomen. He instead stared at his computer screen, seemingly surprised, like myself, that all of my mother’s tests had came back negative, showing no signs of cancer.

Dr. Newbie of course ordered a colonoscopy, but also admitted that my mother was in no condition to have one at the moment. So instead, he ordered juicing and herbal supplements to build up her strength and immunity.

While I am supportive of alternative medicine, suggesting that a frail, sick, elderly woman who lives alone should go out and buy a juicer, and then go track down a bunch of organic fruits and vegetables, wash them, and juice them, is pretty out-of-touch with reality.

I bought her a few varieties of organic fruit smoothies, but they gave her diarrhea.

Ditto the spirulina.

I ordered her a liquid calorie booster to put in her food. It ruined the last can of soup she ever ate.

Following the doctor’s orders was short-lived and ultimately pointless. Mom could only handle drinking Ensure and Boost drinks. Those bottles would be her breakfast, lunch, and dinner for the last month or so of her life.

With no hope of Mom being strong enough to endure a colonoscopy, I knew we would never have a definitive diagnosis.

Colon carcinoma is the diagnosis that ended up on my mother’s death certificate. Still, I feel it should have an asterisk next to it. There’s a 95 percent chance it’s right, but I can’t help wondering if there was something else going on, something that could have been fixed.

It’s the $5,000 question that I will never have an answer to in this life.

Written by Joy Johnston
Joy Johnston is an Atlanta-based digital journalist who began The Memories Project blog in 2012 after her father died of Alzheimer’s. Her essays have appeared in best-selling anthologies, including Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.

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1 Comment

  1. You know,we all do what we can.We were given the privilege and honour to be with our loved ones on their final journey.Yes there’s guilt that we hadn’t done enough and there’ll always be that ‘should have,could have’ stamped forever in our broken hearts.Love them now as you have before.We are them and they are us always.❤️❤️


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