Today, before I go in for infusion number 4, I’m going to stop by Fedex and drop a stack of spiral bound questionnaire booklets off to Dr. Christine Miakowski, RN Ph.D., a professor at the UCSF School of Nursing. The word must have gotten out that I’m a willing guinea pig.
The booklets are part of another research study, the fourth, in which I have agreed to participate. During my second infusion, a very nice research nurse named Marshall came by to ask if I’d like to do the study. I signed the consent during infusion number 3. We hung out with Marshall for a while, his sole job is working on this study, which will track approximately 1,800 patients, 500 of us at UCSF. He waited patiently to slip the forms and the study parameters to me in between wetting my hair for the cold cap, getting the IV started and so on. I continue to be amazed by the caliber of people who work at UCSF and Marshall was no exception.
This nursing study, Marshall explains, hopes to discover what clusters of side effects chemotherapy patients tend to have. Do they follow a pattern? Do some people have genetic factors that tend to predispose them to more severe side effects? Do stressful life events, lack of family and emotional support, financial distress, and depression make side effects worse? Could a positive attitude and more hopeful outlook lessen side effects? How much fear and apprehension does cancer treatment and its side effects create? Does this affect health outcomes? In its scope and ambition, the study reminds me of the Framingham Heart Study, which in 1948 began to follow a large cohort, 5,000 people, from Framingham, Massachusetts to discover what factors most contributed to cardiovascular disease. The study has since enrolled two subsequent generations of the study subjects. Much of what we know about things that lead to heart disease can be traced to this study.
This chemotherapy side effects study, funded by the National Cancer Institute, isn’t that big yet. It’s just beginning, so who knows if it will have as profound an influence as the Framingham study. But in a way, Marshall admits, it’s kind of amazing that these things haven’t been studied in a deep way yet. When those first chemo patients were vomiting their guts out and crying from bone pain, nearly comatose from side effects, didn’t it seem worth exploring?
But then, if you consider that combination chemotherapy is only a few decades old and targeted monoclonal antibodies like Herceptin are even newer, i guess it makes sense. In the early days, doctors were trying desperately to keep people alive. Emotional distress, side effects like vomiting and hot flashes, patterns of collateral damage—these all took a back seat to survival.
As a green reporter 20 years ago, I remember doing a story about how blasted-out, drug-infested Camden, New Jersey had the best views in the Philadelphia, Pennsylvania metro area. I interviewed a University of Pennsylvania sociologist who pointed out that “views are middle class and up.” Until you have your basic needs met, you’re not going to worry about landscaping and sight lines. Likewise, until cancer patients have a pretty good statistical chance of surviving chemotherapy, and surviving for years, neither doctors nor patients are going to analyze side effects too deeply. Do you want to live, or not?
I’m glad they’re doing this side effects study. It seems to be part of a patient empowerment movement that began in the 1970s when breast cancer patients started to push back against radical mastectomies, the so-called “Halsted radical mastectomy” a truly ghoulish operation fueled by the philosophy that “a chance to cut is a chance to cure.” Halsted mastectomies not only removed women’s breasts, but usually their pectoral muscle, the lymph nodes in their chest and arms, and often part of the clavicle (collar bone), the sternum (breast bone), even ribs. I am SO glad that patients and a few doctors pushed for research into whether these severe disfigurements really saved more women than lumpectomies and radiation (turns out they didn’t). I’m SO glad I’m not living in that era.
Deeply studying side effects of chemotherapy recognizes the profound, life-altering, often devastating effect that cancer treatment can have on patients. And the implied idea behind this study is that side effects, quality of life and stress may be much more than necessary inconveniences. They may have very real impact on “health outcomes,” the medico-speak word for “survival.”
Filling out these incredibly thorough forms has required a bit of time, but it has made me so, so grateful. Chemo is no picnic. I’m getting more and more tired with each go-round, but so far my side effects have been limited to:
Week 1, severe nausea, reflux, constipation and fatigue
Week 2, lessening fatigue and nausea, trade constipation for diarrhea
Week 3, continuing fatigue but fairly normal life
Throughout, Insomnia, disrupted sleep, hot flashes, dry skin, cold sores, slight weight gain (no fair!), almost no interest in sex, mild tingling and pain in right arm (thanks to the right drugs, it was severe in the first go-round).
Throughout, amazing support from family and friends, mostly positive life experience. I am blessed, blessed, blessed.
Chemo is not fun, but this study has made realize how truly miserable I could be. Just consider a few of the questions in the booklets I’ve been filling out:
Do you have these symptoms:
Bloating, problems with urination, shortness of breath, itching, abdominal cramps, weight loss, itching, hair loss, irritability, swelling, changes in the way food tastes, coughing, difficulty breathing.
Do you have difficulty concentrating? having conversations with people? following through on plans? making up your mind? keeping your mind on what you are saying? keeping yourself from doing or saying things you do not want to do? restless legs or sleep apnea when you sleep?
Do you often feel like your life is a failure? Do you feel people are unfriendly? Has your cancer treatment made it difficult for you financially? Do you have crying spells? Do you feel that difficulties are piling up and you cannot overcome them? Do you feel inadequate, strained, anxious, jittery, upset?
Do emotional problems keep you from normal activity? Does pain? Do other side effects?
Do you have trouble climbing a set of stairs, doing routine housework like pushing a vacuum?
How afraid of a second cancer are you? of metastasis? of diagnostic tests?
Do you feel hopeless? angry? completely at a loss as to what to do?
Do you not believe you really had cancer? Are you using alcohol or drugs to get through this? Are you blaming yourself?
As I check off the boxes to these questions—mostly no, no, no—I can’t help reflecting that cancer creates this unbelievable, vast plain of fear, doubt, physical pain, emotional pain, financial distress. I am so glad that researchers are striking out into this undiscovered country, trying to understand it. It is certainly worth filling out a few forms.