I chose life

First, this is not a post about pro-life/pro-choice policy. It is the story of how I chose life.

My shoulder pain started in the summer of 2015 while I was training for a sea kayaking adventure in Fiji. For the next year and a half I battled pain with the help of my tenacious physical therapist. In the spring of 2017 I consulted with an orthopedist. He gave me several cortisone injections but ultimately I had a rotator cuff surgery with reduction of a bone spur. Again my physical therapist was helpful in directing therapy and designing a home program. Although my shoulder felt a bit better, pain continued to motivate me to work for a more comfortable life.

In early 2018 the pain got much worse. My days were spent with a heat pack strapped to my shoulder and using a hot tub whenever I could. The nights were spent alternating between the bed, recliner, and couch. I had a heating pad at the ready at all three stations. We took a fold up zero gravity chair with us whenever we traveled, hoping that I could get a few hours of sleep at night. I had to give up activities that I really love: carrying my grandchildren, kayaking, and cross country skiing. I had to be very careful about picking up and carrying things like suitcases, computers, heavy pots, groceries and even pulling weeds. My life begin to get smaller and smaller as pain meds increased and activities decreased.

Through a series of medical twists and turns I finally consulted with a neurosurgeon. After an MRI with contrast he gave us his report. “You have a very large tumor on the brachial plexus,” he said. “Although we don’t know for sure, I assume it is a recurrence of your breast cancer. It is not operable. You will have to consult with your breast cancer specialist to determine the next course of action.”

Several weeks went by before we were able to schedule the biopsy and get the results back. Again we received news that we were not expecting: It was sarcoma, not breast cancer. We would have to consult with a sarcoma specialist to determine the course of action.

We were disappointed that this cancer journey would not be as familiar as the previous ones, but we were still confident that a little chemotherapy would do the trick. After all, how hard could it be? I had done traditional breast cancer chemotherapy and high dose chemotherapy successfully before. And one would expect treatment to be better and perhaps easier than it was18 years ago.

The sarcoma specialist was very nice, very professional, and very compassionate. “I’m sorry to tell you this,” she said, “but the tumor is wrapped around and infiltrating your brachial plexus. We cannot separate the tumor from the brachial plexus. This type of tumor is not affected by chemotherapy. Your only hope for a cure is to amputate your arm and shoulder. I’m so sorry.”

We were speechless. My whole perception of reality shifted in that moment. It was as if I was watching a television show and I was seeing someone else’s life on the screen.

After long minutes of confusion I found my voice. “What if we don’t amputate?” I asked.

“Well, you may have several years of life. We will try to keep you as comfortable as possible with pain meds during that time,“ she replied.

This was not a good option. I was miserable even though I was at the maximum dose of non-narcotic pain meds. I could not envision a life with stronger medications and progressively less activity level as the tumor grew. Although I couldn’t pull up the courage to ask, I felt sure she said ‘several’ years. Like everyone, I want a long life. I want to grow old with my husband and see my grandchildren grow. I am grateful for the wonderful life that I have had, but I want more.

On the sidewalk outside the medical building I stopped Tom. “I think the doctor is very good. She is well trained, she is knowledgeable about the research and my case in particular. She is compassionate yet efficient. Nevertheless, if I’m going to go to such drastic measures as to amputate my arm, I need to hear this recommendation from another expert in the field.”

Tom agreed. We went to M.D. Anderson Cancer Center in Houston for a second opinion. The sarcoma expert there agreed that the only chance for a cure was amputation of the right arm and shoulder. However he did offer chemotherapy for 1 to 2 rounds to see if it would reduce the size of the tumor. He did not say this but in my head a voice of hope said “Maybe the tumor will shrink significantly with chemotherapy. Maybe it will shrink so much that it can be surgically removed without amputation. Or maybe some of the brachial plexus can be salvaged which would allow for some of my arm to be saved.”

We planned for two rounds of chemo therapy three weeks apart. The first round went well other than some nausea, a drop in white blood count and a spike in temperature at mid cycle. When I got through this rough patch we counted the days until the next cycle.

Everyone I knew (and many that I didn’t know) told me they were praying for me. The love and support overwhelmed us. Armed with the knowledge that so many good people were praying for me, I continued to hope that chemotherapy would miraculously shrink the tumor significantly.

But as the days went by my arm became more and more painful. I started narcotic pain medication. The dosage grew day by day to provide some relief but I never had true comfort. Most of the day was spent in a groggy haze, lying on the couch with my arm elevated and wrapped in cool compresses. I needed help for the simplest daily tasks. My quality-of-life was very poor.

My arm became nonfunctional. I could not raise it above the level of my waist and it was useless for daily tasks. It became very swollen and heavy. I cradled it in my left arm when walking from place to place. When In the kitchen I placed it on top of the counter to have some relief from the weight.

Near the end of the first cycle of chemotherapy a scan showed that although the tumor had not grown in size, it had not shrunk either. Should we continue with the second round of chemo, hoping that the tumor would shrink, or should we accept that chemotherapy is ineffective?

The decision in front of me was impossible. How could I ever choose amputation? How could I ever walk into a hospital, sign consent forms, and voluntarily get on a gurney to be wheeled into an operating room for amputation of my right arm and shoulder?

Yet, the life that I was living was miserable. It was difficult to think clearly, but in moments of clarity I knew that I could not spend the rest of my life on the couch, in a drugged stupor with excruciating pain. Nevertheless, I delayed picking up the phone and scheduling surgery.

During that time my good friend Dianne came over frequently to massage my right arm. We were trying to keep inflammatory fluids moving to relieve pain and to keep the arm as healthy as possible. We wanted to keep stress on the skin down so that it would not degrade into sores from pressure.

We had shared with her all of the reports and recommendations. She saw how miserable I was and that my only option for a better life was disfiguring surgery.

She tenderly placed my arm on her lap and became massage it. “We are going to love and care for this arm and thank it for its years of service,” she said. “But it’s time to let it go.”

It was a moment of grace for me. Sometimes we need the wisdom and perspective of another. Dianne articulated perfectly what I needed to hear to move forward. I took a deep breath and felt at peace with the decision to choose life over limb.

Certainly my quality of life has increased a thousandfold since the surgery. I can envision many years of life at this level of comfort and function.

Will I have many years ahead of me? Every three months we confront this question. This Thursday I have scans to see if there is any sign of cancer. I plan on spending the time in the MRI tube giving thanks for the people and the treatment option that led me to choose life.

“This day I call the heavens and the earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live...” Deuteronomy 30:19