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Sharing Stories to Advance Research – Camille’s Story

Camille’s Story:   I came to this meeting to start taking care of myself.  I realized that now that I’ve pushed all the way through the past three and a half years with bladder cancer, I am now at a point where I can help other people.   I was diagnosed in January 2015.  It was one serious year, one of the biggest for our family, there was a lot going on. I had knee surgery in May. I started a new job in July and my first son was leaving for college. I was tired and wasn’t rehabbing my knee well at all. My physical therapist was upset with me.  He didn’t understand why I wasn’t trying. I didn’t understand why I wasn’t trying.  I just didn’t care and felt crappy.

It felt like something wasn’t right.  I felt like I had some “stuff inside.” It felt as if there was something cleaning itself and just needed to come out, an odd feeling. I had been to my gynecologist for my annual checkup in March. Her comment was, “welcome to perimenopause.” I remember her saying it just like that. Was I just supposed to welcome perimenopause? I just thought ok then, suck it up, just be a big girl. This is perimenopause.

I went back a few months later, because I still didn’t feel good.  Things felt strange; intercourse was uncomfortable. Because I was working at a compounding pharmacy, I thought I needed hormone therapy. When I went back to the gynecologist and jokingly said, “Do I have ovarian cancer or something?” I got a call from the nurse who said not to worry about it. I never heard from her. There was never any follow-up.

I should have followed up sooner, but I didn’t. I just fell into work. I went to orientation with my son at college. When I came home, I had a case of shingles. I didn’t feel great and I was having some spotting, which my doctor said was normal. Sometimes I noticed that the toilet bowl was a little orange colored. Now I know if there is orange in the toilet bowl, you just run to the urologist, like I should have.  I’m embarrassed to say I really didn’t know. I associated a urologist with my husband.

Other than when I had my two kids, I had never been a patient in a hospital.  I was a vegetarian, an athlete and I never smoked.  I drank a little bit, but I was just as a typical person living a typical life. I just didn’t know what was up with me.   I continued going back and forth to my gynecologist. Around Christmas time that year I actually passed a little blood clot. I thought something was up. I left work that day because I felt crummy. When I went to urgent care, the doctor who had given my boys stitches numerous times said “You look terrible. Your blood pressure is ridiculously high, and your blood work is not right. You need to go to your primary doctor.” I made an appointment the next day. She looked at my labs and said, “You need to go to a urologist, can you go today”? I thought, I need to go today? She gave me a couple names. One of them I knew from the pharmacy where I worked.

He was not in his office that day, but he said he would come in.  We were talking about skiing one moment and then the next moment he was examining me. When I went back into his office he said, “I think you have a bladder stone and it’s not going to be a big deal. You will be an outpatient and be back to work on Monday.”  I thought that was awesome. This is going to get handled. Our sex life will be good again and everything’s going to be awesome! When I told my husband. We high fived, thinking “this will be great!”

I went that same day and did all the CAT scans and the blood work. The urologist called the following week while we were in the car. We put him on a speakerphone and he asked how long I had been feeling this way?  I explained it was since the late summer. He said this is a problem and told me “This is not a Bladder Stone, it’s a tumor and it’s sizable.” My husband and I were sitting in the car holding our takeout food. I remember just saying, wait, what? He went on to say, “Dr. Fishbach is going to call you tonight.” Tonight? Everything was just happening so fast.

I remember sitting Indian style on our bed in our room with Dr. Fishbach on the speaker phone talking about the gold standard and that stuck with me.  I remember thinking, oh my God. I went in the next week and started chemotherapy.  I did the four months of the cisplatin- gemcitabine.  I was just going to push through and just get this done.

Trying to figure out what to do, that’s how I found BCAN, just trying to figure out what to do. I did not anticipate how hard this was going to be. I didn’t anticipate how big that surgery was going to be because it was the full hysterectomy and cystectomy, having all that stuff out.  I didn’t anticipate that.  When I talk to people now, I don’t want to scare them, but always want to tell them to not underestimate the surgery.

My husband left for England for work the day I got home from the hospital. We didn’t plan or even think I’d be in the hospital 11 days, but my two boys were home. You’re supposed to be giving yourself the shots and you got all the catheters. I remember just being in my bathroom thinking, what am I doing? I was alone, trying to take care of myself and it was very strange.  Especially if you’ve never had a lot of medical experience.   My surgeon was going on vacation. But he had an amazing nurse and I still keep in touch with her.  She was like a gift from God for sure. She helped me through it.  It’s just a very weird thing. I had a Neobladder. Then I developed a vesicovaginal fistula; it was a very difficult one that took three tries to get repaired. By the time we got to repair it, I think my urethra was shot, and I now have an Ileal Conduit. That has brought me to here and it’s a very odd place to be. I’ve had all my scans religiously and I have no recurrence at all, so I feel very blessed for that.