Standard of Care
“Use your precious moments to live life fully every single second of every single day.”
I was lying in a hospital isolation room on a morphine pump - blood transfusions in one arm, a chemotherapy infusion in the other, and my insides packed up with long, burning radioactive rods. My vomiting had become so violent that I had filled up every container in the room. I called to the nurse for anything else to throw up in. She replied, “It’s such a pain to come into your room.”
Having stage 3-B cervical cancer wasn’t my fault, not that cancer ever really is anyone’s “fault.” Before I was diagnosed, I was a healthy, non-smoking registered dietitian, married to a pulmonary specialist. Being in the health care industry, I was especially diligent about my yearly pap smears, labs and everything else tagged as “preventative.” But it wasn’t enough. Somehow my pap smears hadn’t been properly read - five times in a row.
My story begins in June 2001. I was happily breastfeeding my first baby and heading for my initial postpartum checkup. I had been seeing the same doctor for four years and completely trusted his care. For the first time in my life, the doctor called to let me know that my pap from my last check-up had come back abnormal, not to worry, that I should be re-tested. What I wasn’t told was that the note on the lab report also read, “Cannot rule out serious lesion.”
I followed instructions and had another pap. The doctor said that the results were perfectly normal; there were no cancerous cells. What I wasn’t told was that I had tested positive for a sexually transmitted disease. Having only been with my husband for the past eleven years, this information would have certainly raised my eyebrows. At the very least, if somehow, I did have this disease, the “standard of care” would dictate treatment with antibiotics. Instead, hearing the words “normal pap” over the telephone, I breathed a sigh of relief and went on with my life.
In November, I became pregnant again and went to the doctor for my first trimester visit. I asked if I needed another pap along with the slew of standard first trimester tests, but the nurse said no, since there was a normal pap a few months earlier.
Around Christmas time, I began experiencing lower back pain. By early February, it was excruciating, but my doctor could find no cause. I began making the rounds to all kinds of specialists from neurologists to orthopedists, but there seemed to be no justification for my suffering. The implication from the medical world was that I was an emotional, drug-seeking pregnant woman with a low threshold for pain. I was even referred to a therapist to help me “cope.”
By the end of my second trimester, the pain had become so agonizing that I went on disability. I was seeing a pain management doctor who was trying to manage my pain with Class B narcotics, which barely took the edge off and mainly left me feeling “dopey.” When I went for my 26-week ultrasound, the doctor who performed it took one look at me and said, “Something is seriously wrong with you.” This doctor had known me for many years, and just hearing him acknowledge that I wasn’t out of my mind gave me vindication. He immediately ordered an MRI of my back, but the scan stopped above my cervix and did not image my pelvic area. Nothing abnormal was found.
By Mother’s Day weekend, I was literally watching the clock to see when I could have my next round of medication. The baby wasn’t due until July 23rd, and I didn’t know how I could possibly endure that long. On May 14th, 2002 I couldn’t take it anymore. I was admitted to the hospital and learned that I was in pre-term labor. I was given medication to stop the contractions and hooked up to a morphine pump. The nurses rolled their eyes at me, believing that I was just some drug seeking, crazy pregnant woman. From their perspective, there was no real reason for my suffering.
Five weeks into my hospital stay, at 34 weeks’ gestation, I went into labor again and had a C-Section. I was thanking God when my daughter Madeline was miraculously born healthy, but the pain was still there. About four weeks postpartum, I was still bleeding bright red blood. My doctor said this was “normal” after a C-section, but when he finally saw me in his office, he couldn’t stop the bleeding. I had an emergency D-n-C and was hospitalized, this time for multiple blood transfusions. Finally, the bleeding abated, and I was sent home.
Two weeks later, I was leaving for my post-surgical check-up with my OB-GYN when the phone rang. It was the office of an oncologist, whom I had never heard of or spoken to, calling me to schedule an appointment. When I asked the reason for calling, the voice on the other end replied,
” Oh, you mean you don’t know?” My husband was by my side the next day when the oncologist gave us the news.
“You have Stage 3B Cervical Cancer,” he said.
My first question: “How many stages are there?”
“Four, he replied. “There are four.”
I had a newborn baby and a two-year old. My head was spinning, and my heart was racing as I asked the next question. “What’s my prognosis?” He said, “We don’t talk about that. Let’s see how the treatment goes.”
The treatment was aggressive - eight cycles of chemotherapy, six weeks of external radiation, and the internal radiation described earlier. That procedure had to be repeated twice and was the worst experience of my life. When the doctor removed the internal packing at my bedside, I felt completely violated, as though my insides were being ripped out – I could only imagine that this must be how it felt to be raped.
This treatment may have burnt out the rest of my cancer, but it permanently damaged every private part of my body. As a result, I not only lost a kidney and needed a colostomy, but I now live with ongoing pain from the radiation damage.
After this horrific experience, my best friend prodded me to find out exactly what had been written on my “one” abnormal pap smear from the year before. To my amazement, my doctor’s office refused to release my records. The medical assistant in my office requested my results from the lab and got a printout of all my pap reports from the past five years. My husband and I gave everything to a medical malpractice attorney who gathered all my records and sent them to the Director of Cervical Cancer at John Hopkins Medical Center.
The findings revealed that five of my pap smears had been misread beginning from 1998 through 2002. The first three had shown small, progressive changes, the fourth had indicated the need for a biopsy as the “standard of care” and the fifth turned out to not be my slide – the lab had actually mixed up my pap with someone else that had a sexually transmitted disease. It was also clear on my chart that my doctor had “doctored’ his own comments to cover his tracks. There was no addendum, nothing official - just some scrawled writing circling his signature, stating that “patient refused biopsy.” I was never told I needed one.
We filed a lawsuit – not for the money, but because someone needed to be accountable. We had to prevent this travesty from happening to anyone else. With our lawyer, we agreed to a very small settlement if I would get lifetime medical insurance, and the world renowned hospital who was responsible would run a full page ad in the LA Times that said “if you had a pap smear between such and such dates you should have a follow-up pap smear because your results could be wrong.” They refused, and we went to court. After a three-week trial, I was awarded millions of dollars for my pain and suffering. I would never collect most of my award because in the state of California, medical malpractice cases are capped at $250,000. It didn’t matter; the trial served a much bigger, more important purpose for me - it was my therapy. I had tried for so long to be heard, to have someone believe me that something was wrong. Now, the truth had finally come out.
What I learned from my ordeal is that we must be our own advocates by taking health care into our own hands. I was no different than anyone else before I got sick. In fact, I even thought I had better medical care because I am married to a wonderful, caring doctor, and I am in the health care industry. Being your own advocate means not just calling for your test results, it means insisting on seeing your results and keeping a copy of all your own records. And, because women can be looked upon as being emotional, advocating also means paying attention to your instincts, no matter what you are told.
Finally, there is no single definition for the “standard of care” - doctors human, and capable of human error. They are also trained to treat disease; not necessarily to be proactive. That is our job.
Seven years have passed, and no one ever expressed sorrow or remorse for what happened to me – not the doctor, the lab or the hospital. But I can honestly say that I no longer focus on my experience or the physical challenges with which I live. My experience gave me new insight into the miracle of simply being alive. I choose to share my message while devoting my life to my family and work. I am truly blessed with an amazing mother and the most loving and supportive husband that anyone could ask for. And, when I gaze into the eyes of my two incredible daughters, I only feel pure love and gratitude. Madeline and Gabrielle, this story is also for you. When you grow up, you will know that it was both of you and your father that gave me the strength to go on.
I completely love and embrace all aspects of my life, and I count my blessings for each precious day.
