Burris, Suzanne | Surviving Mesothelioma

Burris, Suzanne

C Is For Cure

Personally researching alternative and supplemental treatment methods teaches patients, family members, and friends that the words of one well-meaning oncologist should not be misconstrued as “the law” when deciding on cancer treatment options. Reading Mr. James Rhio O’Connor’s inspiring story and excerpts from his book simply reiterates the fact that my dear friend had so many options left undiscovered.

My best friend and matron-of-honor at my wedding, which we had celebrated just one month earlier, received the devastating news of a stage IIIC ovarian cancer diagnosis. After an unsuccessful de-bulking surgery including the creation of an ileostomy, her family received a less than promising prognosis; however, the very same oncologist told my friend, “My goal is to cure you and reverse your ileostomy.” Hearing the “c-word,” as we all still refer to it today, set a chain of events in motion that her oldest daughter struggles with even now—almost two years later.

Within a week, she started an aggressive regimen of weekly chemotherapy treatments, continuing for the next nineteen months. There were no discussions: no information about the long-term effects on her organs, no adjuvant therapies mentioned, and most importantly, no recommendations on promoting her mental and physical well-being—no treatment of the person, just the disease. Family members seriously questioned amongst themselves the appropriateness of whether or not informed consent was properly established; unfortunately, even her family’s requests went unheard. That dreaded “c-word” prevented my friend from inquiring about any further information from her oncologist.

She was tremendously lucky in that she never experienced any of the devastating nausea and vomiting that usually accompanies chemotherapy, and her appetite was excellent. Because she had such a healthy appetite but was eating many sugary snacks and processed foods, her daughter started looking into dietary therapies for cancer patients. She suggested that perhaps a visit with a nutritionist would benefit her and better equip her body to fight the cancer. To a 65-year-old woman such a suggestion was ridiculous. I clearly remember her saying, “Don’t you think my doctor would recommend that if it helped at all?” During routine visits to the oncologist, her daughter tried to discuss these poor food choices, her lack of exercise and her continuous smoking habit. The oncologist and the chemotherapy nurses seemed to feel it was more important that she was actually eating versus the importance of what she was eating. Why were there no recommendations regarding the importance of a more balanced diet, a smoking cessation program, or an effective exercise regimen? These professionals seemed only to have an interest in her cancer rather than her overall health and well-being. The family was awestruck; how could her doctor and nurses ignore how the lack of these things possibly affected her cancer treatments?

Growing increasingly disillusioned, her oldest daughter suggested looking into obtaining a second opinion. Infuriated at the oncologist for even suggesting he was going to cure her mother, my friend’s daughter tried to reason with her mother on the potential of another doctor’s opinion and, again, additional or alternative treatments. Even with her most recent CT scan clearly showing her not only unresponsive but also growing tumors, the oncologist’s only treatment plan was to increase her chemotherapy treatments to three times a week with a different drug. Despite the obvious toll weekly chemotherapy treatments had exhibited—multiple transfusions, dangerously low red blood cell counts, and even hospitalization—the long-term effects of these treatments were still not mentioned. She had the right to know and fully understand that these treatments were weakening and destroying her body. This lack of information robbed her of the ability to make an informed decision.

Despite never experiencing any physical pain until the last week of life, this poor woman underwent many painful psychological changes during treatment. She began to experience mood changes, insomnia, depression, and overall personality changes. Her family noticed she was making poor financial choices, and despite their wishes, she continued to drive her own vehicle. After bringing this to the attention of her medical team that now included a social worker, her daughter never received any information from them regarding her questions about the benefits of cognitive behavioral therapy, counseling, support groups, and occupational or relaxation therapies, which she had researched. In addition, her daughter was learning about the potential of biofeedback, mind-body therapies, and touch therapy. Getting nowhere with her mother, because, once again, this information was not coming from the doctor, her daughter pleaded with the social worker to have the team address these potential treatments with her mother. At her next doctor’s appointment, the team did ask her many questions about her feelings of depression, but she denied them all; consequently, the discussion was over in her mind. Perhaps she thought if she admitted these feelings to her doctors, it would somehow disqualify her from receiving treatments, which then would prevent her from being “cured.”

Sadly, she put everything in her life on hold waiting for this cure to take place. After a 20-month battle, my best friend succumbed to ovarian cancer on December 6, 2009. I wish to share that not only was she my best friend, but I am also the oldest daughter and the bride referenced in this essay, who was blessed to have her by my side on my wedding day and throughout my 45 years. I cannot help but feel if the “c-word” had never been spoken, and her oncologist had effectively explained every possible option available to her, she, at least, would have been able to make a more informed, involved, and educated decision in her own treatment plan. Although it may not have improved or affected her prognosis, it would have greatly improved the quality of her life. After reading Mr. O’Connor’s encouraging and motivating experience, however, I feel perhaps she may have beaten the odds of her prognosis and enjoyed a longer life.

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