Kristi’s Story: Being an Advocate for Yourself is the Most Important Thing

Before my diagnosis, I associated my symptoms with going through menopause; I was 55 when diagnosed. I had bleeding (hematuria) once before and decided to see my nurse practitioner. While there, they did a urinalysis and said everything was fine. The doctor confirmed my thinking that this was related to my menopause. It was not until a week later that I was at work and started bleeding for six hours – nonstop. Of course, I knew it was different from a normal period, so I decided to go back to see my doctor.

They finally gave me a scan and were able to see that there was something abnormal on my bladder and referred me to a urologist.

The day came for me to see the urologist; we did a cystoscopy and saw a tumor on my bladder. Oddly enough, the tumor was the cutest thing. It looked like a little ocean plant that was right by my ureter. This was all new to me, and I had no idea what to expect. After the scope, I went home and waited for the results to come back. I received a text message from my portal stating that I had a new message, the test results. All I can remember it saying was something carcinoma, and I started sobbing. I was at work and called my husband right away, letting him know it was cancer. I immediately left work and went home. This happened at the end of 2019, right before the pandemic. I had no clue what was in store for me the following year.

Everything started to happen pretty fast. I had my cystoscopy then surgery to have my tumor removed, and I was scheduled to have my second scope in March of 2020, but COVID hit, and they canceled all procedures. It was not until June that I was able to get my second scope and by that time, my bladder was full of tumors. Luckily for me, I already had surgery scheduled because I had a tumor in my throat. It was non-cancerous but still needed to be removed, so my surgeon said, “Well, why don’t we do a 2 for 1?” All the tumors were removed and was sent home with a catheter and referral to the Mayo Clinic. I assumed that I would start chemotherapy treatments, but they wanted to do another surgery in July. I was shocked, but there were more tumors found during the surgery.

The surgery went fine, and I had to wait a month to heal before starting my treatments. September of 2020, I started my first six weeks of chemotherapy. It was interesting to see how they do the treatments. Intravesical chemotherapy is placed into your bladder, then you have to hold it in for two hours, and my gosh, does it burn. The hardest part for me was when it was time to urinate and release the chemotherapy.

I had another cystoscopy in November, and it revealed that I had yet more tumors, necessitating another surgery, and my doctors decided not to do chemotherapy. Then I had another cystoscopy in March; there were more tumors and another surgery to remove them. I received another round of chemo during the surgery. Finally, last June, I had my first clean scope. I was ecstatic. I was looking at the screen and seeing that beautiful bladder wall empty with no tumors—finally, a sigh of relief.

Going through all of this, I tried my best to be upbeat. My family would always compliment me on how “strong” I was, but deep down, after finally getting the clean cystoscopy, it hit me that it was a cloud, a dark cloud hanging over my head. In the back of my head, I am thinking about it all the time. Yet you have to continue living and enjoying life. Being stuck in the house during the pandemic gave me a chance to reassess my life. There were so many things I wanted to do, and I was not going to wait. I am planning and starting to look at retiring and starting a second career. Life is short, but it does not really hit you until you go through something like this. If it wasn’t for my support system, I do not know how I would have made it.

My husband has been incredible. He is my biggest supporter and always there for me. It was just wonderful. This has really made our relationship that much stronger. I do not think we have ever been closer in the 25 years we have been together. I shared everything with my family and kept them posted. Work was also supportive. I have been very blessed to be so supported by family, friends, and work.

Another great resource for me was the BCAN website. I found BCAN through my Facebook group for women with bladder cancer. There are a number of resources that I have utilized including volunteering. I have set up a virtual walk for 2022 here in Minnesota. I have a pretty big group of supporters and I made sure to tell them they are going to donate and participate. I have also thought about starting a support group in my area and hopefully with BCAN’s support, I can start working on that.

I want to end my story by giving advice to others who are going on this journey or may know someone who is. As women, what I hear most on my Facebook group page is that a lot of women are told right away if they have any issues or any bleeding, “Oh, it’s just menopausal or urinary tract infection,” and they do not follow through with what is needed to be done. Being an advocate for yourself is the most important thing and if you are uncomfortable or scared, then bring somebody with you. If you do not think that you can go alone and ask all the questions, then have somebody with you. A family member or friend and tell them how you are feeling and what you need to know if you are not comfortable. Life is too precious to not advocate and care for yourself. 

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