The following story is not only the story of my bladder cancer journey but also the story of the origins of the American Bladder Cancer Society.
2004-2011
Good cancer isn’t that am oxymoron? Those are the exact words I remember thinking the first time I heard the c word used pertaining to myself. During a renal ultra sound the tech said almost absently to me while looking at the screen that bladder cancer if caught early was a good cancer to have. He obviously thought I already knew I had cancer, as he left the room I remember lying there feeling as if someone had sucker punched me. I had recurring blood in my urine and an infection they couldn’t seem to get rid of that was all it was something simple not cancer right? I was a professional, a wife a mother, 47 in the prime of my life in the best shape I had ever been in I couldn’t have bladder cancer could I? Reality and terror set in when the pathology came in Stage 2 high grade transitional cell carcinoma. It was invasive but it could be worse people survived this one, that was my mantra……….
The night I got my pathology report to this day it is probably the most surreal night of my life. It included being accosted by a doctoral student doing his dissertation on death and dying in a cancer chat room, reading about one woman having fourteen surgeries following radical cystectomy, looking at statistics that told me I might die and a stent on the bathroom floor in the fetal position. I was desperate to talk to someone who knew what I was going through but I could not find anyone.
The first step was to find where I should go for a second opinion where they knew a lot about bladder cancer. I was already in denial about getting a radical cystectomy so when I found a stage three clinical trial for bladder preservation in invasive cases at a very major hospital I finally went to sleep with a plan. Our first appointment with what would become my team I remember being almost obsessed with my appearance I wanted them to see me as a worthwhile cause worth saving I wanted doctors that cared about me that I could trust and work with and we hit the bull’s eye. It was also the first time I realized that my husband and I were truly a team and a good one at that.
I entered into the clinical trial I knew if it failed I would still need to have a radical cystectomy. What followed was a nine month treatment plan. I went to chemotherapy infusion twenty times and had forty trips into pelvic radiation. I lost my hair twice and learned more about perseverance than I ever wanted to know. Patience had never been my long suit but it is amazing how patient you can be when you have no choice. I had also been the one to take care of everyone my whole life it was a humbling experience being the one who needed the help.
I stayed in the city during the first six weeks of treatment during the work week in a hotel. My day would start with radiation then on to chemotherapy and end the day about 5 with another round of radiation chemo three times a week radiation five. Much of that time is a blur now but a few things I remember as it were yesterday.
My husband was on a conference call when it was time for me to leave for my first trip to radiation so I quickly kissed him and told him I would see him at the chemotherapy unit. I was trying hard not to hyperventilate and just wanted to get on with it I felt as if anyone was to nice to me I would not be able to hold it together. I got to the door of the cancer center and froze, I was going to let someone poison me and irradiate me and if I didn’t ………. All of the sudden a little boy ran past with a bright red backpack with his dad right on his heels he was laughing and bald as a cue ball. He ran in and hit the button on the elevator. I remember walking in and standing in the hall watching the floor indicator stop at 3, pediatric chemotherapy. I walked to the ladies room and sat in a stall and cried I to this day do not know if I cried for the little boy or for me. When I came out of the restroom I had decided that if he could enjoy the moment and do what he had to so could I.
I was bored in chemo one day one of the rare days I did not have a roomy and the therapist who worked the unit came in. She was not one of my favorites she always seemed to be going through her list not really caring one way or the other and I was always careful to give her the answers she wanted so she could get on with her job. She asked me a question and for the first time I said something out of the ordinary. When asked if anything was bothering me I said yes, the uncertainty of it all. How do you live life if you don’t know what to plan if you would be around long enough to live it? She sat there and looked at me for a very long time and said “what would you do differently if you knew”? To this day I ask myself what I would regret not doing if I died tomorrow and I try to make sure that it gets done.
The hotel decorator that thinks that putting length mirrors on the wall facing the bathroom doors is a good idea is wrong. I was not looking a pretty site bruised, pale, blotted and hairless as people sometimes are who go through a lot of chemo and radiation. It was time to get ready for the day of treatment and the Today Show was on it had gone to the local affiliate. It was October Breast Cancer Awareness Month, they were talking to a young woman who was a breast cancer survivor she was having a spa day and everyone was cheering her. All I wanted was someone to talk to, a support group but I had the wrong kind of cancer and I cried.
The tumors just kept on coming neither radiation, BCG or systemic chemotherapy stopped them. I had a radical cystectomy less than a year after finishing the last of my chemotherapy I had failed the clinical trial. Because of the radiation I have since lost a kidney and had another surgery to reverse a blocked ureter. The only part of my native urinary system I still have is one kidney and a ureter. I am cancer free and I can honestly say that bladder cancer may have changed my timing but it has never stopped me from doing what I wanted to do.
I was not even out of chemotherapy when I was working on finding a way to make sure that survivors had a place to go for support and information. When I went to my husband and asked him to help me finance starting an organization to support the needs of bladder cancer survivors and their issues he said ok and what do you need help with? When I called bladder cancer advocates Sylvia Ramsey and Karen Green as well as caregiver Sally Duffy and asked them what they thought of the idea they said what do you want me to do, since then so many have joined in and added their voices and talents. We are now going on your fourth year and growing every day. We work to see that no one every feels alone with a bladder cancer diagnosis, to make sure everyone knows the bladder cancer symptoms and so that we all see the day we are no longer needed. It’s interesting where a bump in the road can take you isn’t it?
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