Guest blog by Charyn Pfeuffer
Author of Breast Cancer Q and A: Insightful Answers to the 100 Most Frequently Asked Questions
"I never went to Europe," my mother sighed in a Percocet-induced state of delusion. (That comment was followed up with "And I can never have sex again," but I readily ignored that statement.) It was a Thursday night, exactly two weeks, before my mother's 38-year old body would surrender to a brief, half-year battle with metastatic lung cancer. At the time of her diagnosis, I was 17-years old, and cancer was a topic that never, ever occurred to me. I grew up in a cookie-cutter Philadelphia suburb where, except for the occasional tragedy or accident, people just didn't die until they were good and ready. So, you can only imagine my shock and disbelief when I later found out that best-case scenario was that my mother had three months to live. From the moment my family was handed the dreaded "C" diagnosis, I immediately embarked on an exasperating educational crash course in the world of cancer, health care, and medical experts.
My mother was first treated for what doctors thought was a blood clot in her right arm that resulted from overexertion. Although my mother was statuesque, she wasn't exactly Wonder Woman when it came to physical strength. If her right arm was ever overexerted, it was from lifting the cordless phone to her ear, obsessively vacuuming the house, schlepping shopping bags from Saks Fifth Avenue, or from mixing 5 o'clock cocktails. I would later come to appreciate that she made up for her physical shortcomings in the emotional department.
My mother, Christine Pfeuffer, spent my pre-senior year summer (1990) in and out of the hospital. When she wasn't horizontal and hooked up to intravenous blood-thinning drips and taking smoke breaks with the nurses, she was taking a carefully timed, around-the-clock regimen of prescription drugs. Her condition was hardly improving as her arm and neck swelled to unattractive proportions, and doctors kept fumbling for a possible diagnosis. One moment it was Hodgkin's Disease, Lyme's Disease the next. My notion that doctors were all-knowing creatures (in the same realm as parents and teachers) slowly dissipated.
One hot-as-hell August day, she was in the midst of a week-long inpatient stint at the hospital. Her throat started constricting and she physically turned blue. Doctors were at a loss of what to do, and she was transported via helicopter to the intensive care unit of another Philadelphia-area hospital. When I arrived at the latest and greatest hospital, during the designated family-members-only visiting hours, and saw her semi-conscious body, I realized the uncertainty and seriousness of her condition. I didn't know what was wrong with her, but for the first time, I knew that she could die.
A CT scan later; a suspicious mass was discovered. The mass was aspirated, and the fluid was sent out for cell count and cytology evaluation. Cytology came back with Class IV cells, raising suspicions amongst the doctors of adenocarcinoma. A few days later, my mother's ever-changing condition had a name: non-small cell lung carcinoma. The doctors also made an alarming discovery: a tumor existed on very first CT scan taken in June. The report accompanying the original CT scan stated in the very last paragraph (on the fourth page) that the underlying problem was cancer, but two months later, it was the first we'd heard of it.
Doctors were surprised that the original hospital and throng of doctors didn't mention cancer, and were reluctant to confirm how long she had had the disease. We skeptically wondered if she'd been transferred to cover the initial hospital's mistake. Lesson learned: it's crucial for the patient or the patient's advocate to review all x-rays and reports, and not take the doctor's word as the absolute truth.
Pissed off, but grateful to know what we were working with, I immediately set about researching the diagnosis and treatment options. The doctors had given us disappointingly little information to go on: a few photocopied handouts, a short recommended reading list, and numbers for family therapists. The books we did consult required medical dictionaries to simply navigate, let alone fully comprehend. I was scared to death. My mother was dying for chris sakes. I felt helpless, left in the dark, and appointments and treatments were being scheduled too fast to keep up. Making decisions, let alone informed decisions, was damn near impossible. As I look back upon my mother's medical records, I wince at her scrawled signatures on countless consent forms, knowing that she had little knowledge of the choices she was making.
Once my mother was stable enough to be cared for at home, she started seeing doctors at a top-notch, specialized cancer center on an outpatient basis. She was consulted about the possibility of chemotherapy and radiation, and managed to receive about a month of radiation treatments. The radiation was brutal on her fragile body, and nightly I would soothe her burned skin with lotions, tickle her back, and brush her hair. It was the least I could do, and these simple pleasures brought her so much joy. But her condition rapidly deteriorated, and doctors ruled out the possibility of chemotherapy. It was clear that she wasn't going to survive with or without chemo, but the doctors snatched up this opportunity of a last ditch effort away. Life was moving faster than ever, and although the doctors and nurses tried to keep us up to date on her status, we always felt two steps behind.
My mother's quality of her life became the most important issue. We knew she was going to die; she was given three months to live, maximum. Throughout the dying process, my mother claimed minimal pain, but after one look, you knew she wasn't a very skilled liar. Women are rarely given societal permission to express feelings of pain or distress, and my mother prided herself on being the dutiful housewife and my father's secretary. Many women with cancer experience feelings of intense guilt if they dare kvetch about any of the side effects, such as pain, menopausal symptoms, psychosexual effects, etc. They are living with cancer and how dare they complain about anything else when their strength and focus should be on conquering this disease? Sheesh.
Doctors were endlessly adding to my mother's medicinal artillery. The more scripts they wrote, the less I recognized the woman my mother had morphed into. Her connection with reality was long gone, and although I found much-needed moments of comic respite in her hallucinations and delusions, I would've given anything for the way things were pre-cancer.
Exactly one week before my mother died, she was checked into the chi-chi Suburban Philadelphia cancer clinic. She'd been on a never-ending wait list, but somehow, my father finagled her admittance. The evening before she passed away, my dear friend, Marc, and I made the 45-minute schlep to the hospital bearing irises. I left her spa-like room knowing that would be the last time I would see her breathing. Sure enough, the following morning, I had a lingering, sick feeling around 10:30am. Lynard Skynard's 'Free Bird' came on the radio. I don't particularly like Classic Rock, but for some coincidental reason, 'Free Bird' would come on the radio at pivotal times throughout my mother's sickness.
I knew in my gut that she had passed away, and I knew that nobody would be able to find me. Reluctantly, I made an appearance at school, and my instinct was confirmed by the Vice Principal-the last man I would ever hope to be consoled by. The moment that my suspicions were verified, I knew exactly what I was supposed to do. I'm not a religious person, but it was like some immaculate conception took place in my mind. I had always considered my mother the ultimate taskmaster, queen of the 'to-do' list-but during what should've been an emotional meltdown, I was able to maintain some semblance of sanity and put one foot in front of the other. I wish I could say the same for my relatives, who, to this day, are still in deep denial about my mother's death. I guess we all deal with death differently-some better than others.
Fast-forward a decade: my father married an amazing woman-a high school teacher and a wildly creative and insightful woman. I acquired two incredible stepbrothers in the process, and have grown considerably closer with my sister, Carrie. Yes. I still mourn the loss of my mother, but I have learned to rejoice in the positive things that life has dealt me as a result. Cancer makes you take a step back and re-examine your life and what you want it to mean. My mother's brave spirit and words, "I never went to Europe," have inspired me to live my life fully, kindly, spontaneously and with purpose.
When I moved to San Francisco in 2000, I desperately wanted to give something back to my community. I'm a freelance journalist with a flexible schedule and a hunger for human interaction. As much as I love my 10-second daily commute to my trusty computer, giving dating advice to girlfriends via Instant Messenger isn't exactly what I had in mind in terms of a humanitarian contribution.
I found the Women's Cancer Resource Center (WCRC) in Berkeley, CA, participated in an intense training program, and immediately began volunteering. At WCRC, I assist with the annual fundraising event (Swim-A-Mile) and staff the Information and Referral Helpline once a week. Breast cancer is an issue that comes up far too frequently, and, as a woman, it's hard not to take notice. Calls from women with cancer, their friends, co-workers, employers, family members, and loved ones flood the Helpline, helping me to refine my listening skills. As a volunteer, I am able to provide these panic-stricken women with immediate information about support groups and services, traditional and complementary treatment options, and information on local physicians and other health care providers.
I think it's important for women to evaluate all of their treatment options, both conventional and complementary. Much of the information and opinions currently available are biased towards one method or another, and I hope to present many of the possibilities free of weighted-down medical jargon. Much of the research for this book was conducted at WCRC's extensive library. And since you won't find a Ph.D., MD or RN after my name, I've had the appropriate information reviewed by two women who are experts in their respective fields. Lillie Shockney is a breast cancer survivor and the Director of Education and Outreach at Johns Hopkins Breast Center. Beverly Burns is a mother, practicing acupuncturist, and Clinical Director of the Charlotte Maxwell Complementary Clinic in Berkeley, CA. I asked Diane Estrin to write the Foreword, since my experiences at WCRC have far exceeded any expectations I may have had. I sincerely want women near and far to know about all of the wonderful services and comfort that WCRC provides. It has been sort of an extended family for me. And to return the support these groups have provided me, a percentage of the proceeds of this book will be donated to these incredible women's organizations.
Breast cancer is by far the most common cancer among women. This year, breast cancer will account for nearly one out of every three cancer diagnoses in women. The good news is that an estimated 2,167,000 women are living with breast cancer. These shocking statistics and my personal experiences with cancer, however, prompted me to write this book. If a woman hasn't been affected by breast cancer, she is at risk. Over 70 percent of breast cancers occur in women who have no identifiable risk factors other than age and only 5-10% of breast cancers are linked to a family history of breast cancer.
Whether you're newly diagnosed, in the midst of treatment, picking up the pieces post-treatment, or facing a recurrence-coping with breast cancer can be a frightening journey. A diagnosis of cancer inevitably brings with it countless questions and becoming an instant breast cancer authority can be overwhelming. Whatever your reaction may be: it is normal. Cry, get angry, feel fear, scream and shout, belt out some Aretha Franklin, or do whatever it is that you need to do. In this time of crisis, you must become your own advocate. I cannot emphasize enough the importance of patient empowerment. Whatever your questions or concerns, you should never hesitate to share them with your treatment team. You'll be faced with making difficult decisions that you may not feel comfortable making. That said, doing research on your own can make the dialogue with your treatment team much more productive. It is essential to remember that you have time to gather information, and then make decisions based on the facts and personal considerations, (i.e.; your life style, emotional well-being and philosophies)--not knee-jerk emotional responses.
This is your life and your breast.
You are an individual, not a statistic.
You have needs that are unique to you.
Information is a valuable tool.
You have every right to be involved and in control of your medical care and decisions.
Questioning authority, respectfully, is often difficult and fraught with self-doubt. Doing so is often necessary and productive. One should do so without fear of making the wrong decision, no matter how vocal and determined are the forces against doing so.
The fear of the unknown tends to be worse than the actual treatment.
Treatment for cancer has greatly improved and survival rates are at an all time high.
Think of the future.
"The most courageous act is still to think for yourself aloud." Coco Chanel