September 14, 2010

The story behind “Lifesaving Drugs, Deadly Consequences.”

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When InvestigateWest Executive Director Rita Hibbard and I first met Sue and Chelsea Crump, Sue was suffering from cancer that she and Chelsea suspected may have been triggered by her long history of handling chemotherapy. The tip rang a bell for Rita, who recalled mention years earlier of studies indicating oncologists got certain cancers at higher rates. When Rita asked me to look into the story, it triggered a strong association for me as well. My grandmother had served as an Army nurse in WWI near the trenches in France. Many years later, I remember her recounting the horror of treating young soldiers blistered and burned by mustard gas, the precursor of today’s cancer drugs. I understood their power.

 Between the four of us, we believed there was at least the seed of a story worth examining. That early conversation led to InvestigateWest’s year-long investigation. The story was widely published and broadcast, receiving strong national attention.  It has triggered discussions at state and national levels of how to improve regulation to keep healthcare workers safe.

Through the last two years, Chelsea underwent two profound role reversals. She was a student who became a source, and a daughter who became her mother’s caregiver. Today she is finishing a double major at Western Washington University and learning to live without her mom for the first time. She is the reason we know her mother’s story. This, in her own words, is her own story:

My Mother’s Story: A Daughter’s Journey

By Chelsea Crump

            It is hard to explain to someone what it is like to lose your mother to cancer. I don’t cry when someone mentions her name anymore, but I still cry within. My mother was strong when she first told me she had pancreatic cancer. She cried on the phone, but assured me that everything would be fine. She said she was too stubborn to die and I shouldn’t worry about it. I collapsed on the bathroom floor after I hung up the phone and stayed there crying until my boyfriend, Bryan, found me. That was May 1, 2008, the beginning of the end.

My mother endured her first surgeries, chemotherapies and radiation treatments with no problems. Her body tolerated the toxic soup of medications with ease and she seemed to be feeling and looking better. She called an old friend of hers from pharmacy school to share her news, and her friend told her that she, too, had been diagnosed with cancer. Then her friend reported of others – all also former pharmacists like my mom – who had developed various malignancies:  cervical cancer, breast cancer, skin cancers, bone cancers, brain cancers, prostate cancers. All these cancers had invaded the bodies of people who had worked in hospital pharmacies, and, like my mom, had mixed a lot of chemotherapy. Mom said that’s when she thought something wasn’t right.

My mother told me that in the 1970s, when she attended pharmacy school and was first hired at Swedish Hospital, she did not remember wearing gloves, masks, gowns, or any kind of protective wear when she was mixing intravenous chemotherapy and other medications for patients. She said she remembered mixing an antibiotic, called tetracycline, for a patient that was so potent that when a drop of the drug landed on her skin, she could smell the medication in her urine hours later. This sounded alarming to me, and I thought my mother could possibly be correct in her assumption that something wasn’t right – that the medications she mixed for patients might be ending up in her own body as well.

The following week, I sat in my journalism class at Western Washington University mulling over the “coincidences,” and wondering whether my mother’s work could have contributed to her getting cancer. That same day, Rita Hibbard, executive director and editor for InvestigateWest, came to speak to our classroom about investigative reporters and why reporters have a responsibility to uncover wrongdoings in our society. I thought, “Is what happened to my mother a wrongdoing to society?” That was all I could think about, but before I knew it, Rita was walking out of the classroom. Class ended and I was upset I hadn’t had a chance to pull her aside and tell her Mom’s story.

Later that day, during my last class, I was surprised to see Rita sitting in the corner of my classroom. I listened to her carefully this time, waiting for the right moment to raise my hand to talk to her or get one of her business cards. But, again, she had to leave before the class finished. I had half an hour left in class, but I slipped out of the classroom and jogged down the hall. “Excuse me,” I yelled, and Rita turned around. I told her the story and asked if my mother might be correct in her suspicions. Rita took my name and number and said one of her reporters would contact me in a few weeks.

About a week later, Carol Smith from InvestigateWest contacted me and asked whether my mother would be willing to be interviewed. My mother was reluctant at first to tell her story for fear of upsetting former colleagues. My mom said that she loved Swedish Hospital and the people she worked with, but she was afraid more members of the pharmacy community would develop cancer if she kept quiet. So, she agreed to speak with Carol.

Carol and photographers Paul Brown and Mike Kane followed my mother for months, documenting her struggles, complications and multiple battles with her pancreatic cancer. Through it all, I never thought my mother was going to die. She was too positive. She hardly ever cried. She never talked negatively about her situation. She traveled with my father and me. She never left the house without a smile on her face. My mother even joked with the nurses at Cascade Cancer Center while they were administering her chemotherapy.

On July 2, 2009, she and my father packed to leave for Lincoln City, Ore. for a 4thof July Celebration, when she noticed her skin had turned yellow. My father took her to the emergency room immediately. She spent the month of July in the hospital because her liver was failing and fluid had begun to collect in her abdomen. After two surgeries, she had a tube inserted into her chest to drain bile out of her body and a tube into her belly to drain the ascites fluid from her abdomen. The nurses at Evergreen Hospital trained me how to clean and dress her wounds, and deal with the fluids draining from her body. That was when Dr. Carlos talked to my mother about “prolonging” her life, rather than “curing” her. I was devastated.

I practically lived in my mother’s house when she was not in the hospital and my mother hated the idea of me taking care of her. She would tell me, “I can handle this myself,” or “You don’t have to do that right now because I feel fine.” She had always hated taking pills and the sicker she got, the more pills I had to force her to take. Sometimes, I would get so angry at her for not listening to me. I would yell at her, pleading with her to take the medications to make her feel better. Those were pretty low points for me. I should have “kept my cool,” as she would say, but I just wanted her to trust me and let me help her.

One night near the beginning of August 2009, she started to become un-responsive. She started to hallucinate and repeated meaningless phrases over and over. I rushed her to the hospital emergency room and spent the rest of the night talking with doctors. Together, we decided, she should go to the Evergreen Hospice center where she could die in peace. I called my uncle Kirk, my aunt Carol and my grandparents to come say their good-byes. My father called her friends and his side of the family to let them know what was going on. Staff expected her to “pass on” within two days. Her time had run short.

We sat in her room, nervously chatting with each other and the nurses. She could hardly move and was not talking. This was the first time I had taken a good look at her. My mom’s cheekbones were visible, the skin around her neck was loose.  I could count the bones in her fingers. Her legs were the same size as my biceps and her eyes seemed grey, not blue. Two, then three days passed by. Then, gradually,  she began to talk to us. She started to sit up to change the television channel and talk to visitors. She was getting better and stronger each day. Her smile returned to her face and she started walking with a walker all over the hospice building. It was an absolute miracle. The nurses told me there was no reason for her to stay at the hospice center and that I could take her home.

I moved back into my childhood home that week and rearranged furniture to make room for the hospital bed and other medical equipment. I spent hours with the nurses learning what medications to give her when and what to do in the case of an emergency. Bryan moved in with my mother to help tend to yard work and help me administer her medications in the middle of the night. We spent our days watching television, eating all her favorite junk-food, watching Bryan work out in the yard and taking short drives around Redmond to get her out of the house. We had visitors during the day and at night; we watched movies and stayed up late talking. This lasted for two weeks.

On Labor Day, we were all out in the yard, enjoying the sunshine when my mother began to look uncomfortable. She was shaking and she did not want to move. She started yelling at my father for not moving her into the shade, when she was already in the shade. Something was terribly wrong. I called the hospice nurses and they told me the medications that kept toxins in her body from building up were no longer working. The nurses told me to prepare for her to act irrationally and possibly become confrontational in the next 24 hours.  Then, they said, she would stop talking altogether and not move.

That night, I had to tie her to her bed with a bed sheet. I thought it was a barbaric thing to do, but the nurses said it was for her own safety so she would not injure herself if she tried to stand on her own. She stopped speaking the next day and she could only blink her eyes and close her mouth. Although she could not speak, I know she could hear me. I read her a letter from a pharmacy friend of hers and she cried. Death lingered in the room, especially at night. I was so afraid she would die in her sleep without me with her. I did not want her to be scared, or lonely. I kept the television on at all times, so she had at least something to listen to when we did not feel like talking. I did not know if she was awake or sleeping most of the time.

On Sunday September 13, 2009, my Uncle Kirk and I were in the living room watching television. None of us had slept well the past week, just waiting to see when her time was going to come. We each held her hand and adjusted the blankets on her bed. My mother took one deep breath. I looked at her, then at my uncle, then back at her.

“Kirk, I think she just took her last breath,” I said to my uncle. He did not say a word, just looked at my mother’s face. About 30 seconds went by, but it seemed to take an hour. She took one last small breath and then my mother was gone.

The hospice nurses told me it would end like this, that she would take a few labored breaths and then be gone. But I was not a nurse and I had not seen a person die before. I went into shock. I did not cry.

One year ago,  my mother, Susan Lynn Crump, died. The estate is closed. All the paperwork is done and her house has been cleaned out. I no longer think it is her calling when the phone rings and I have forgotten her work schedule. I call my father now when I am having a bad day and call my sister for girl advice. I have adjusted, but miss her terribly. There is not a day that goes by that I do not think about my mother’s upbeat personality and the way she smiled. When I need to hear her voice, I listen to a voicemail she left on my cell phone.

My mother was a strong woman to tell her story and I am proud that her last goal in life was to save future pharmacists from suffering as she had. InvestigateWest’s story about my mother appeared in multiple news outlets around the country. A documentary television program InvestigateWest co-produced with KCTS 9 ran here and nationally on PBS. The story ran on the front page of the Seattle Times on July 11, 2010. She succeeded in her goal, but never got to see the final product. My mother’s story is much longer than this and I know in my heart that she was not the only woman who suffered. I am not the only child that has lost a parent to cancer and I will not be the last.

My mother is only one and I am proud that she told her story. I know she is always watching over me. I will always love her and remember her.

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