Mayo: My Best Hope for Treating My Rare Cancer

Mayo: My Best Hope for Treating My Rare Cancer

By
Joel Streed

January 20, 2011

Mayo Clinic had already been a source of invaluable consultations for my long-time autoimmune Sjogren’s Syndrome and for genetic counseling to ascertain potential genetic predisposition for the autoimmune conditions, cardiomyopathy and cancer that populated my family tree.

But late in 2008, skilled staff at Mayo Clinic in Rochester, Minn., greatly increased the odds that I’d be alive to write this blog entry at the beginning of 2011. I’ll be forever grateful to the surgical, oncology, gynecology, digestive health and complementary/integrative medicine staff that have provided medical treatments and ongoing consultations for my metastatic appendiceal adenocarcinoma.

Light vaginal bleeding in the setting of a prior total abdominal hysterectomy began late in September 2008 while I was at the University of California in San Francisco participating in an international genetic study of Sjogen’s Syndrome. A biopsy at Luther Midelfort – Mayo Health System in my hometown of Eau Claire, Wisc., in late October revealed adenocarcinoma consistent with a colorectal primary. While my diagnostic colonoscopy revealed no signs of colon cancer, the staging CT scans revealed an appendiceal mass and a vaginal cuff mass. Surgical consultations were set to begin November 18 at Mayo.

Pulsating lower right quadrant pain landed me in Luther Midelfort’s Emergency Room on the afternoon of November 5th. The Emergency Room doctor treated my pain, and once my condition was stabilized, sent me off to Mayo Clinic in the middle of the night with plans to see Dr. Donald Jenkins, a critical care surgeon stationed at St. Marys Hospital, to serve as the lead for my medical team.

A wide range of consulting white-coated professionals were in and out of my hospital room in the following days. Appendix cancer is very rare. I had confidence that my medical team was well-prepared for all possible scenarios. Surgery took place on November 11 and an intact appendix, 14 lymph nodes, 12 inches of my colon, the tumor embedded in my vaginal cuff and enough tissue to assure clean margins were all removed. A smiling Dr. Jenkins announced to my anxious siblings that the surgery had gone “better than textbook.”

My post-surgical consults a few weeks later included Dr. Jenkins, medical oncologist Dr. Axel Grothey and internal medicine physician Dr. Amit Sood, with Mayo’s Complementary and Integrative Medicine program that I’d read about months ago in a Mayo Clinic newsletter. Dr. Grothey has consulted closely with my Midelfort Clinic oncologist Dr. Sandeep Basu to guide my chemotherapy regime. Twelve rounds were provided at Luther Midelfort’s Cancer Center from late December 2008 to mid-June 2009, with quarterly CT scans, blood work and Dr. Grothey consults at Mayo. I have found the office visits I’ve continued with Dr. Sood particularly valuable, in addition to his paced breathing DVD (also available as an IPhone app) and his Log On book detailing his many recommendations for mind-body healing.

Unfortunately vaginal bleeding in mid-February 2010 followed by a biopsy confirming vaginal wall invasive grade 3 adenocarcinoma of the appendix had metastasized. PET/CT scans also identified multiple peritoneal nodular regions suspicious for tumor recurrence. I started back on chemotherapy the end of March 2010, this time of a palliative nature. Surgery was deemed not an option. The cancer is now considered advanced, incurable and eventually terminal. I just completed chemotherapy treatment 27 at Luther Midelfort.

While in surgery at Mayo Clinic way back in November 2008, my sisters started a Caringbridge page for me. I’ve now have over 15,000 visits. This venue serves as a vehicle for me to share my
experiences and feelings and to gather up love and support from all over the country. Good friends here in Eau Claire helped me organize a “Share the Care” Morning Glories Circle of Care network to lend practical assistance and encouragement. My many years as a social worker with older adults and disabled persons continues to be an asset for me at this juncture, particularly my years with Hospice.

I’ve arranged for my body to be donated to Mayo Clinic for medical research, continuing the family traditions of my father Jim who died of cardiomyopathy and my sister Mary who died of ovarian cancer. I continue to value my quarterly visits to Mayo, where I always stop by for a few quiet moments in the life-affirming meditation chapel. Staff at the Stephen and Barbara Slaggie Family Education Center has kept me apprised of any up-to-date research articles on appendix cancer. I was thankfully able to participate in a brown-bag session on Intensions for Healing which connected me with other cancer patients intent on living a full life.

I look forward to receiving chemotherapy in the new cancer center at Luther Midelfort. I remain thankful that the close collaborations between my Mayo Clinic and Luther Midelfort medical teams have given me many days of living, with a hope of many more. And we are all rooting that I shall be in the audience at the University of Chicago in June 2012 to see my youngest daughter graduate. My “Dianne’s Future Amazing Life Adventures List,” that I started while awaiting surgery at Mayo Clinic, has served me well since my cancer diagnosis. I’m hard at work adding new dreams for 2011.

My most important life goal right now is to create fun, lasting memories with my two delightful young adult daughters Emma and Sally O'Brien. Together, we crossed out one of my "Amazing Life Adventures" list dreams by enjoying the Wizarding World of Harry Potter in Orlando, Fla., this past September. To keep me hopeful that my continuing chemotherapy treatments will garner me many more months of quality living, we are scheming to tour southern England in late August on the trail of writer Agatha Christie, whom we all relish. Hope is a very powerful thing. It could happen!

In the video below, Dianne shares some of her story.