Desperate needs for compassion from oncologists
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By Chang Se-moon
This is the title of my book, just published by Scholars' Press. It tells my story as a caregiver for my wife during her years fighting pancreatic cancer, from the initial Whipple procedure Nov. 5, 2011, to her last day on Dec. 8, 2016.
I wrote this book hopefully to help future cancer patients as well as the direction and progression of the profession of oncology.
On Dec. 31, 2016, I moved into a small condominium in a retirement community called the Leisure World of Maryland. For the first time in my adult life, I was alone. I did not know what to think beyond feeling sad and empty. Total confusion and helplessness may have been a better description of me.
You see, I never made an appointment with doctors, nor had I ordered a meal at the restaurant since my marriage. For the past 45 years, my wife Youngshin had been my partner and companion.
Early in January 2017, there was an article in the Leisure World News soliciting volunteers to testify at the Maryland House of Delegates to support the passage of the proposed End of Life Option Act. I was selected as one of two presenters from the Leisure World community and later testified to support the passage of the act.
Early in September 2017, I received an email soliciting papers for presentation during the 4th International Conference on Palliative Care and Hospice Nursing scheduled for a year later in August 2018 in Boston, Mass. I made a presentation as one of two keynote speakers at the conference.
My paper with the same title as this article was published in the November 2018 issue of the Journal of Palliative Care & Medicine. When I was invited to write a book by Scholars' Press, I knew I had an important story to tell.
The maiden name of my wife is Kwack Youngshin. She graduated from Kyunggi Girls' High School, and Seoul National University with French language and literature as her major. Our marriage was arranged by our parents. The first time we saw each other was at Gimpo International Airport in Seoul early in September 1971. Friends called our type of marriage an “airport marriage.”
Late in August 2011, Youngshin and I joined a group tour to Alaska. During the trip, Youngshin complained about leg cramps. The cramps were the first sign that something might be wrong. When we returned home, Youngshin casually mentioned that she had lost weight. I asked how many pounds. She responded “about 25 pounds.”
We met our family doctor the next day, who, after a blood test, suspected a bad cancer somewhere near the bile duct. She ordered us to check into the Spring Hill Hospital Cancer Center in Alabama, where we lived, through the emergency room on the same day.
On Nov. 9, 2011, Youngshin had a Whipple procedure, which was followed with Gemzar chemotherapy. Gemzar chemo was followed by periodic testing of CA19-9, known as the tumor marker, in conjunction with CT scans.
The tumor marker began its gradual rise. On Feb. 18, 2015, Youngshin's blood test showed an increase of CA19-9 to 609. A CT scan next day showed small nodules in the lung, a possible indication that Youngshin's cancer spread to other organs.
Youngshin began treatment at the world famous MD Anderson in Houston, Texas, March 27, 2015. We also kept seeing a local oncologist just in case.
Some days, chemo was so painful and exhausting that Youngshin questioned whether it was worth living. The entire treatment process had been a dizzying roller coaster. When today was the worst day, the next day became a worse day.
Worse than the worst day came Aug. 30, 2016, when the oncologist announced that the chemo had not worked. We were accepted into a clinical trial at the same MD Anderson on Sept. 16, 2016.
Our final visit to MD Anderson was on Nov. 21, 2016, when we were told that the drug in the clinical trial has not worked. It would be a gross understatement to say that we sat stunned and speechless.
When we returned to Mobile on Nov. 23, we drove directly to our local oncologist who told us that he agreed with MD Anderson assessment. He added “no drug would be helpful at this time.”
The one and only request that my late wife voiced during all our appointments with oncologists was to make it painless when the time came for her to die. Our local oncologist and two oncologists at MD Anderson never explained to us how to control pain, let alone gave us a prescription for pain control.
It may well be that oncologists in general hear such requests from so many of their terminally ill patients that they have learned to treat them as being useless words from a dying person.
Even now, more than two years after Youngshin passed away, I am not blaming anyone. I just feel sad, thinking that so many hospice patients would be leaving this world with little or no compassion from their medical personnel.
If interested in reading the full story, you may contact Editor Tatiana Botnari at “t.botnari@scholars-press.com”.
Chang Se-moon (changsemoon@yahoo.com) is the director of the Gulf Coast Center for Impact Studies.