Surrenduring

When my Mother was diagnosed with cancer 19 months ago, I realized exactly how powerful doctors really are.  How powerful, and how fallible.  I have never been one to idolize doctors.  I’ve had several experiences that amount to  nothing short of malpractive. Now, I take careful notes at all medical appointments, whether I am visiting my own physician or my mother’s onocologist.  I research terminology, medications, and make an effort to be informed.  There is however,  only so much that can be done without a medical degree.

After months of chemo, my Mom was too weak to carry a plate of food to the table. She insisted on trying though, at nearly every meal-which resulted in a lot of broken dishes, and a lot of frayed nerves.  She had, and continues to have peripheral nerve damage resulting from a combination of chemo drugs that her small town onocologist chose to use.  The surgeon that she was referred to refused to operate on the tumors in her liver, and she was told by her doctors to “get her affairs in order”.  When she asked the surgeon if her death would be painful, the asshole said “it’s not the easiest way to go”.  She took no treatment for six months.  During that time, the cancer came back with a vengance-with some tumors nearly tripling in size.

Conversations with my Mother during this time period inevitably led to talk of which of her belongings she would like for me to have.  She was exhausted, as were we.  She began showing signs that her liver was not functioning well, logging several visits to the emergency room for unbearable pain.  In July, fifteen months after her initial diagnosis, I received a newsletter from a local hospital.  I’m not at all religious, but the information contained gave me instant hope-it was like receiving a message directly from heaven.  The article told the story of several cancer patients that had “non-resectable” liver cancer-meaning doctors had decided that it was inoperable.  They were using a new treatment to send radioactive beads directly into the tumors.  While I don’t remember the details of the article, I do remember that history of the patients seemed remarkably similar to my Mother’s own.  We immediately went back to the doctor- a new doctor-this time at a world class facility.  The doctor there was appalled that she had been told to prepare for death, and had stopped taking treatment.

That was five months ago.  While we know she will never fully recover from her cancer, she has enjoyed five more months of visits with her grandchildren, and she is enjoying a higher quality of life than she did during previous treatments.

I learned such a valuable lesson as a result of this experience.  There will of course be a time when Mom’s  fight is over,but when she will decide when she is done- not the doctor.  As a patient (or an advocate for a patient) don’t expect your doctor to present all of the options to you.  Look for options, ask questions and realize that, as knowledgable as your doctor may be- you are ultimately responsible for your treatment.

Ultimately, Mom’s best option was to participate in a clinical drug trial, so she did not receive the bead treatment that led us back to the doctor.  However, the beads may be an option for her later.  It’s good to know that there are options.