Thursday, February 28, 2013

Prisoner to Cancer Pain -- Donna's story

By: Ty Thomas, MD
Alabam Pain Physicians

I want to share a true short story about one woman's struggle with cancer pain.   Unfortunately, cases like this one occur too often.  Many of us know or have treated someone with cancer and have seen how painful and debilitating cancer can be. This pain often destroys any remaining quality of life.   It saddens me when someone suffering from terminal cancer pain is denied relief because many in the medical community do not know what treatment options are available.  I was fortunate to be in a position to help.  Stories like Donna’s need to be heard in the medical community.   Managing pain is about adding quality to life, and I wish we could have provided Donna this valuable time earlier.  

This story was written by Donna's friend. 

The elevator doors slid open to reveal the nurses. I did not need to ask which room my friend occupied. I could hear her cries from around the corner and down the hall. It was 2:54 am. I already knew what to expect as I steadied myself at the door. I had made this same trip many times.

“Hon? Can you tell me what level your pain is?” The nurse held her clipboard, prepared to scribble down Donna’s response. My eyes met those of Donna’s bewildered husband Nick. He sat worn and speechless. Witnessing his beloved 42-year-old wife’s pain had become a daily routine, yet it was one he would never grow accustomed to.

I took off my wool coat as I stepped in. “I think it’s safe to assume it’s a 10.” I hoped my words were not too harsh, but it was a stupid question. Unable to speak through the pain and involuntary rhythmic moans, Donna attempted a slight nod of confirmation.

We had been through this routine with the doctors and nurses countless times during the past four months. Donna suffered from colorectal cancer. Daily cocktails of pain medications left her almost comatose and unable to recognize or respond to her three children.

Donna was diagnosed on March 18, 2010 with stage 3 colorectal cancer. She spent the first months afterwards at home trying to maintain a level of normalcy for 18-year-old Kirk, 14-year-old Jayson and 8-year-old Mattie. Homeschooling them kept her mind focused and off her constant pain. The fear of the unknown and the persistent pain were a constant reminder of the fragility of life.

Radiation and chemotherapy successfully shrank the tumor, but scar tissue and a fistula from the radiation forced an unwelcome colostomy. The pain and discomfort mounted. Further testing to confirm remission left us on edge as we waited, hope and fear intermingled in our thoughts.

Many prayers and meals from family and friends helped sustain the family’s semblance of life. A debilitating phone call came from the doctor after seven months of their new daily routine. “By the way Donna, the cancer is back.”

Over the next 13 days, Donna underwent 26 proton therapy treatments in conjunction with chemotherapy to fight the new tumor. The growth of a new mass explained the unremitting pain.

Donna's familiar family structure no longer existed, but a new form of normal began to take shape. Dinners delivered by extended church family and visits from friends took the place of homework. Donna could no longer lie flat in her bed. Sleeping next to her husband was replaced with restless nights trying to find a moment’s relief in the family room recliner.

The pain intensified as large doses of oral pain medications caused agonizing constipation. The number of weekly visits to the emergency room increased, sometimes to three in a seven-day period.  When the nearly lethal doses of medications would not ease the pain, the emergency room was the only option. The oncologist and pain management team at the hospital did not have any other suggestions for controlling her pain.  I do not believe they did not care. I believe they did not know.

Unbearable pain was simply a part of her cancer. Specialists were sympathetic, but as I witnessed the episodes my friend underwent, I grew angrier and more frustrated. My questions went unanswered. I was surprised at the doctors’ and nurses’ apparent lack of knowledge about this kind of pain and how to treat it.  While she was hospitalized, she just was offered a combination of her at-home medications and IV administered drugs. Overdose was a constant threat from so many drugs. One night, Donna tried to shuffle to the restroom from her hospital bed, lost her balance and landed on her face, resulting in a broken nose.

Donna had been a stay-at-home mom who homeschooled her three children. Eighteen months into her battle, I would enter her hospital room to find books and spiral-bound notebooks spread across her bed while Mattie practiced her fractions. Jayson would sit in the corner and quietly watch over his mother while his father worked. Kirk would join after his classes at the local university.

This family was no stranger to cancer. Jayson won his battle with leukemia as a 3-year-old. This family knew how to be tough. They knew how to be strong. They did not know how to give up. They knew there had to be a way to alleviate the pain.

The pain increased and the doctors grew cavalier in their “comatose is better than pain” attitude. I began to think outside oncology. Donna needed good pain management. How could she fight the cancer if her body was trying to survive the pain?

I contacted my brother – a pain management specialist in Birmingham, Alabama – for help. He too was frustrated and disappointed that health care professionals were still unaware of the treatments available for this type of severe pain.  He recommended a pain pump. A pain pump administers controlled doses of medicine directly into the spinal cord, reducing the side effects of heavy oral medication.

When I mentioned the pump to Donna’s doctors and nurses, they were either unaware of this treatment or did not consider her a candidate. After weeks of being dismissed by local specialists, my brother made the contacts in our area to get a pain pump placed. Twenty-one months after her battle began and a few weeks before Christmas, she received her pain pump.

The pump was a miracle in our search for relief. Donna enjoyed going to the movies with her kids for the first time since the battle began. She was able to help them with their homework and have conversations without falling asleep. Mattie stopped rushing to the front doors to escape her mother’s cries of pain.

“Mama was able to go to Wal-Mart with me for the first time since she got sick.” Mattie did not realize it had been nearly two years. Donna had found a new freedom from pain and a new life.

Donna’s happiest moment after receiving the pump came when she was able to leave  her recliner. Her eyes grew misty with gratitude as she described the feel of her husband’s arms wrapped around her as she lay beside him for the first time since the cancer pain invaded their lives. This was a hope she had given up.

“Who knew my greatest anniversary gift would be the ability to lie next to my wife?” Nick reflected
on the moment he was able to hold his wife again without causing her great pain.

Donna celebrated her 42nd birthday alert and coherent and in minimal pain.  Friends and family gathered with food and gifts to mark the occasion, and Donna was able to sit up and enjoy the party.

The frequency of visits to the emergency room and the nightly monitoring of oral medications decreased. Unfortunately, the cancer had begun to spread. Donna had eight months of relatively controlled pain with her family. Out of 29 months of battling for her life, 21 were spent in excruciating pain. Time Donna should have had to spend with her children was wasted begging for relief in the hospital or being heavily medicated in her recliner, a prisoner to pain.

Her long and frustrating battle was not only against the cancer but with the team of physicians and nurses. Her quality of life for the remaining weeks and months made a difference in a 9-year-old’s last memories with her mother.

Cancer pain is a terrible thing to endure and to witness. Finding relief should not have been so
difficult. “We just didn’t get it in time.” Nick whispered. His regret was mixed with thoughts of “what if.” What if she had gotten the pump twelve months earlier? What if she would have been stronger to fight the cancer? What if she had been able to make the long ride in the car to treatment facilities?

Donna did not survive her battle with colorectal cancer. However, her last days were not spent suffering. For that, her family and friends are forever grateful.


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