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Sharing Stories to Advance Research – Anne’s Story

Anne:    I was in the military between the reserves and active duty, for 40 years. I retired as a Lieutenant Colonel. I began my career at 18 years old and the last 15 years I did several overseas combat tours. I was assigned to tours in Iraq, Afghanistan, and in Bosnia. I was always in non-traditional roles, and I did nontraditional jobs. My regular day job, when I wasn’t doing reserves or active duty, was as a corrections officer. I felt like I always had a UTI even my last tour in Afghanistan. Even though I had blood in my urine the entire time I was in Afghanistan, I never had a cystoscopy. I was given antibiotics for a UTI. Six months later, my mother passed away. Everybody in my family said I didn’t look good. I came back home from the funeral and immediately went to urgent care. They gave me more antibiotics. It was not getting better and I was seeing red in the toilet bowl, blood clots, you name it.

When I finally went to a urologist she looked at me and said, “Well, we’re going to change your antibiotic.” Then she also scheduled a scope. I was on active duty at the time. I went during my lunch hour to have the cystoscopy. When I walked into her office, and she said I had cancer. I asked, “you haven’t done a biopsy. How can it be?” She replied, “I’ve been here 18 years. I know what it looks like and immediately began to explain what she suspected.” She said, “I wish there was somebody here to help you or just be with you,” but I was on my lunch hour. They did blood work. They did the CT scan the next day and then I met with the surgeon. The following week I was in surgery to get the TURBT. Mine took over three hours. They compared my tumor to the size of my uterus, but in my bladder. They kept asking, “Did you have any signs”? I told them I thought it was old age.

The military did train me to be strong. I think I did not present that I was sick. By the time they got the pathology report, a few weeks later, they had a tumor board discussion. They sent it to Johns Hopkins for the second look.  It came back as a very unusual bladder cancer. They told me that I had lymph node activity.  The surgeon said, “You have a very real bladder cancer, you have to get everything out. I’d love to take you in next week to take care of all that.” This was the first week in April. He said, “But I can’t take you into surgery until you get a second opinion, if not a third opinion.” So that’s when I found my team at Johns Hopkins.

I went to every appointment with a band of people, friends and family. They were all listening to everything that was being said because I probably tuned out a couple times. I thought oh my God, that therapy that means I’m going to die. There was a lot of that going on, but not really. As long as I could do my ballroom dancing, I was okay. I ended up having a chemotherapy that was very unique, according to my doctors. The treatment began in June and then I had my cystectomy. My urologist said that I was clean. That was just a joyous moment, because the level of my cancer was aggressive. I have had a lot of fun in between then and now. People say we have a ‘new normal.’ Well, I try to keep up with the old normal, which was never normal.

I’ve retired from the military. I’ve retired from prisons. I tried to be on good behavior but doesn’t happen often. Four months after my cystectomy, I went to Blackpoll England, which is the most prestigious ballroom dance event. I was invited to compete in the inaugural year for Pro-Am dancers. I got to go on the sacred floor of Blackpoll and dance. Even though I was huge from steroids and dancing amongst world class dancers, the champions were basically in tears seeing me dance because I still did not have much hair from the chemo. I’ve been very lucky. I’ve not had a reoccurrence, which is unusual. I live one day at a time still. I get to dance quite often. I do speak to people and I do spend a lot of time going to survivor meetings.

I get more education on what I need and what I do. At one of the meetings was when there was a physical therapist at Johns Hopkins that did pelvic floor evaluations. She helped me so much. Things really did progress quickly after that on getting healthier, but I do well, and I don’t complain often.

Read more about Anne here.