“Winning Cancer and Fighting for Information”
My mother is a nurse, growing up we always had a card hanging from the shower nozzle with a diagram explaining how to check for lumps in your breasts. The ritual is simple, place one hand behind the nape of your neck, and while rubbing the breast in a circular motion massage the breast and feel for any lumps around the circumference of the breasts. I did not always remember to check in the shower, but sometimes I would remember to check before dozing off to sleep.
It was December 2016 between Christmas and Hanukkah when I found my lump. It felt like a lump of coal under my skin. I guess If I believed in Santa Clause this would mean that I was on the naughty list.
During the last couple of years, I have had to expand my medical vocabulary in response to my diagnosis of stage 3, hormone receptor-positive, BRACA gene negative, ductal carcinoma in situ invasive breast cancer. Before diagnosis, if you would have said any of those words to me I wouldn’t have known what you were talking about. Before my diagnoses, I did not understand what cancer was, or why a mammogram is important, or what a biopsy is, or why having Ashkenazi Jewish heritage made me susceptible to the BRACA gene.
I did not know much about chemotherapy, radiation, hormone therapy, or about lymph node and scar massage. The words bilateral mastectomy, oophorectomy, hysterectomy, and lumpectomy were all foreign languages. Until the Winter of 2016, my understanding of Lymph nodes, estrogen, melatonin, pituitary glands, and aromatase null. I did not know what an oncologist, radiologist, or lymphatic massage therapist did for a living. A trip to the Doctor was very rare for me before I was diagnosed with Cancer.
Before cancer, I had been medically obtuse; I had never broken a bone, I never entertained the idea of having plastic surgery, nor had I spent the night in a hospital. Before diagnosis, I could not tell you the difference between aromatase inhibitors and ovarian ablation or had I calculated the benefits vs. the risks of eating phytoestrogen containing food like beets and tofu. Nor had I ever experienced symptomatic effects of medication and surgery like hot flashes, joint pain, lethargy, nausea, or lymphedema.
When the doctor called me to inform me of the results from my first mammogram and biopsy, my mind just reeled. I was only 36 years old, I was too young to have breast cancer, right? I had so many questions about what I needed to do next in order to eviscerate cancer. One thing I did understand was that my life and my body were about to be completely uprooted. I had experienced what Belkin defines as an “anomalous state of knowledge” I had an ASK, the basic motivator of information (Case, 2016, p. 85) I understood one thing, which was that I needed to get to work; I intended to fill in my knowledge gaps and do everything I could to eradicate the morbid disease.
Like Maria, I also had a visceral knowledge experience, an unquenched need to discover information about cancer. Although Maria's intention was to help her family, my reasons were based on my own vivacity. I spent countless hours researching my cancer: Googling new vocabulary words, browsing titles at libraries, bookstores, and listening to audible books. I searched for my cancer in the OU Library databases, and websites like Susan G. Komen, I interviewed doctors, attended health talks, and perused waiting room pamphlets, and magazines. I even joined a few online communities like the Deip Flap Support Group on Facebook. Finally, I started writing my own blog so that I could process the deluge of information coming from all around me. Here is a link to my blog. https://rebekahzipporah.blogspot.com/2017/03/its-very-nice-hair-cut.html
Browsing and scanning the information environment helped me to find relevant, pertinent, and salient information, which I then used to determine treatments and surgery options that I could live with. During the first few months following my diagnosis, I was broadsided with treatment options. The treatment path I chose to take involved prophylactic bilateral mastectomy and lymph node removal to eradicate the physical cancerous tumors. Followed by nine months of chemotherapy and radiation treatments. This Summer in May I began the Diep Flap reconstructive surgery process. For the next ten years, I will have to continue to receive hormone therapy using a combination of Tamoxifen and aromatase inhibitors, and I will probably have to consider ovarian ablation or oophorectomy surgery. The hormone treatment data is complex and unfortunately, there is no easy fix, or one size fits all treatment option available, my research will resume.
The fourth edition of our text, Studies in Information; …, describes my information seeking scenario as sense-making“ Until we recognize the existence of a gap in our knowledge – often signaled by a mild anxiety and or a need to act – we are not motivated to search for information.” (Case, 2016, p. 34) It seems like Everywhere I go, I experience the serendipity factor– the seemingly accidental discovery of relevant information (Case. 2016, p.34) The accidentally found on purpose, causation of information, which is influenced by curiosity and searching behavior. It’s as if the information jumps out at me from every direction. For example, while using the toilet at the YMCA; I discovered Livestrong, a YMCA support group that promotes the importance of physical activity after a cancer diagnosis.
For the most part, I conducted my research without professional assistance, aside from Doctor consultations. I did not ask librarians for help with research. How could I ask if I could not decode the medical language? Taylor indicates that “the negotiation of reference questions is one of the most complex acts of human communication. In this act, one person tries to describe for another person, not something he knows, but rather something he does not know” (Taylor R. S. 1968) Talking about cancer felt very raw and intimate, I found it difficult to speak to anyone about it except my medical team.
Verbally asking for information would immediately and literally open the floodgates, and I was not ready to experience all the emotions, which I was deeply feeling. In the beginning, I intentionally avoided all emotional responses. I had a job to do, which was to research and solve my cancer problem. I had no time to reflect only to act. This type of information behavior described by Abraham Maslow states “We can seek knowledge in order to reduce anxiety and we can also avoid knowing in order to reduce anxiety” (Case, 2016, p. 123) I was only interested in a problem solving I had an information need for timely and utilitarian data.
The act of verbalizing my questions made me feel very vulnerable. The sense-making and problem-solving reaction to the diagnosis were like a fire, which burned hotter with every piece of information I added, but the fire was also exposed, and it could be snuffed out if I let my emotions take over. Taylor talks about information inquiry, “Acceptance of information as relevant defines readiness before that information was available and causes a change in the inquirer's future state of readiness.” (Taylor, 1962, The Process of Asking Questions) Not quite ready for all the answers all at once I found myself tackling one treatment or surgery at a time.
My information behavior was also Salient“Dervin terms information that is salient, is that which could be used to bridge a gap, solve a problem, or resolve a troublesome ambiguity. Thus, salience is the key motivator in deciding to look for Information.” (Case, 2016, p. 158) My intent was to stay focused and clear-headed so that I could manage the conduit of treatment options ahead of me. In a study of Factors influencing information need among cancer patients: A meta-analysis, Kalyani Ankem noted that younger cancer patients preferred to be actively involved in treatment-related decisions and needed more information. (Ankem, 2006) The first few months after my diagnosis, I was required to make quick life-altering decisions. Now that the dust has settled a bit, I am able to prepare more and concentrate on physical and emotional self-care.
Taylor also talked about a self-help machine for library reference retrieval. He referred to an antiquated system that used a programmed microfilm reader! Libraries could digitally develop a program that could help users to formulate and extract a solid question when they lack supporting subject knowledge. Sometimes forming the question is the hardest part of the research. I would have appreciated a resource to connect with that simulated a virtual reference environment. A survey or digital form capable of conversing with me to discern my question.
The digital interview would help the user extrapolate and focus on a relevant quarry. To avoid the user feeling probed or anxious about revealing private information the digital interview would help express those sensitive questions. In the article, the Anomalous States of Knowledge as a Basis for Information Retrieval, Belkin discusses the need for different types of retrieval strategies (Belkin, 1980) The resource would scan keywords and help the user to formulate inspired relevant interview questions. The virtual librarian resource would then provide articles, printed literature, websites, and audio-visual material based on the Q&A, just like a live reference librarian would give an interview and provide resources for the user.
Along with organic questions simulation, the program could also produce common source sets. These source sets would consist of premeditated data subjects based on popular questions asked by users. The need for this would mimic google searches. People ask random questions to Siri, Google, and Alexa and It is doubtful that they are getting peer-reviewed literature as a response. “Ask Library” could offer more factual and educated responses.
References
Ankem, K. 2006. Factors influencing information needs among cancer patients: A meta-analysis. Library and Information Science Research,28(1), 7-23.
Belkin, N. J.1980. The anomalous States of Knowledge as a Basis for Information Retrieval. The Canadian Journal of Information Science, 5(1), 133-143. pdf
Donald O. Case and Lisa M. Given. 2016. Looking for Information: A Survey of Research on Information Seeking, Needs, and Behavior, 4th. ed.
Taylor, R. 2015. Question-Negotiation and Information Seeking in Libraries. College & Research Libraries,76(3), 251-267. pdf
Taylor, R. 1962. The process of asking questions. American Documentation,13(4), 391-396. Pdf
rebekahzipporah.blogspot.com, 2018. Livinggood; words about health, food, and feminism. [blog]. Retrieved from https://rebekahzipporah.blogspot.com/2017/03/its-very-nice-hair-cut.html
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