Alice’s Story: Be Positive About Your Diagnosis

It was summer of 2018, one night in late July, about two o’clock in the morning. I woke up with this horrific pain in my back on my right side, but I did not think too much of it. Maybe I slept wrong. So, I turned over hoping it would go away, but it did not. I ended up staying up for the rest of the night. Being a freelance writer, I had an assignment I was working on and I tried to get some writing done, but the pain was so unbearable, I could not finish. My husband had left for work earlier that morning and I remember texting him to please come back home and take me to urgent care. I knew something was wrong. We arrived at the emergency room and a couple hours later, they did the CT scan. The ER doctor came in and she said to me, it looks like you have a mass or a nodule in your bladder. I had no idea where this came from or why it would be there. The doctor let me know that I would need to follow up with a urologist.

After my first visit to the emergency room, I ended up back there again for the same pain in my back. The urologist advised that I would have a TURBT procedure. Two weeks after the procedure, I went in to see the urologist again and he gave me the heartbreaking news that I had stage two muscle invasive bladder cancer, it was aggressive and there were ways of treating it aggressively.

I was not prepared to hear that. It took me completely by surprise. They gave me a nephrostomy tube in the right kidney, and I had to keep that in until I had my surgery in December, the week before Christmas. I was also receiving MVAC chemotherapy in between. I’ve never, ever experienced anything like that, and it was very tough. The side effects I experienced were pretty unpleasant. I had the nausea, no appetite, hair loss, extra saliva, extreme fatigue and mouth sores.

The day of my surgery came, and I had a radical cystectomy. I had discussed with the surgeon at Penn Medical in Philadelphia my options, but felt that the neobladder would be more trouble than it was worth. I opted for the ileal conduit. The surgeon told me that over 70% of his patients prefer this to any other bladder option.  I spent six days in the hospital and when I finally went home it was very hard for me to walk. Walking from the living room to the kitchen was such a task. You cannot even imagine how compromised you are after receiving such a major procedure like that. You go from having a bladder to not having it. I remember a nurse telling me we all urinate; this is just a different way that you do it now.

Hearing the about the experience that others had who chose a neobladder, I felt having a urostomy pouch was the best thing for me. I was fortunate enough to have a home nurse come out every week for the first six weeks to help me get adjusted to my new normal. You do not really feel the pouch when it is there, unless it fills up a lot, but you get up and empty it then you are fine. I did have occasional leakage, but I make sure I carry an extra pair of clothes and supplies. To me, those extra steps are not a big deal. It is tough but you must take it day by day. I am happy I had my friends and especially my family there to support me. It means so much when you are going through this journey.

Being a survivor is not an easy road, but you will get through it in time. It may not happen in a week, a month or two months, but you will be able to get through it. There are a lot of treatment plans and there are many people out there that really can help you get through having bladder cancer. Even if you have to go through the radical cystectomy, it’s not the end of the world. As a matter of fact, it will be the beginning of the next part of your life. Finding BCAN and reading the stories of other patients also helped a lot. It made me feel better, as I was going through the treatment and gave me an idea of what to expect out of all of this even now, I will still come to the site and look at what others say.

I am back to living my life exactly the way I like it. I never thought it would be possible, feeling the way I did when undergoing chemo to living my life today. I do so many different things and I’m back to the way I’ve always been, and it’s amazing you can actually go from one end of the spectrum to the other, but it is very, very possible in today’s world. Remember, always be positive in your approach to this disease; there are treatments that will cure you completely.