Red Flags I Noticed Before My Diagnosis

Mary Beth: In the fall of 2013, I noticed blood in my urine. I was with my mom when I first noticed it. We were at a family member’s wedding at that time. I thought it was weird, but we were busy and there wasn’t that much blood, so I didn’t think much of it. I thought I had a urinary tract infection (UTI) or was starting my menstrual cycle. I was experiencing it intermittently.

A few months passed and I noticed that it wasn’t going away, even though I had been treated for a UTI. I decided to make an appointment with a urologist to have it checked. I almost didn’t go because I stopped seeing the blood at all. My urine was a teeny bit pink, so it wasn’t alarming. I almost canceled my appointment because it was gone that week, but it was a good thing I didn’t.

I lived in Nashville at the time. I went to see the urologist and he scoped my bladder in his office. He could see that I had tumors in there and wanted to have them removed within a few days. I proceeded to have an outpatient laparoscopic surgery to remove the tumors he saw.

Mary: We were in Danville and she was in Nashville. This happened through a phone call. Her dad is a retired physician and I’m a retired nurse, so we have a medical background. He primarily got the report. If I remember correctly, he talked to her and I talked to her after that.

We were shocked, to say the least, because there’s no cancer in our families. She’s awfully young and in our experience, bladder cancer typically is for a heavy smoker and usually a middle-aged to old age man. She didn’t fit the medical picture that we were familiar with.

I knew she was very upset. I tried to calm her as best I could on the phone, but that doesn’t help when you’re in shock at something that you were not expecting at all. We all felt like it was an emotional blow.

Her dad and I felt that treatments were the answer and that this could be taken care of. At that time, we were trying to help her cope emotionally, which wasn’t easy because we weren’t in the same town.

Discussing My Treatment Options

Mary Beth: It was a pretty intense appointment. He talked about how I could do the first line of treatment, which would be BCG immunotherapy. He also talked about bladder removal (cystectomy). He talked about how my bladder cancer was high grade and the type to recur, and how the odds of it coming back were high. I felt bladder removal was more on his mind for me, so that I wouldn’t have to keep dealing with it. I also think there were other chemotherapies I could mix with that.

There were a few different options, but all I can remember from that initial consult was the percentages of my cancer getting worse or coming back, which was overwhelming at the time. Truthfully, it wasn’t warm and compassionate. I decided to get a second opinion.

My Mom’s Role in the Treatment Decision-Making Process

Mary: As a surgeon himself, my husband took the reins with her at the appointments or at least to hear about her options. He took care of the medical aspect of what they were proposing. I was the emotional support and went with her to treatments because he was still practicing at that time.

I was able to stay in Nashville and accompany her to the clinic and help with anything we could do to help at home, so that she could take it easy. That was my main function and where I could help the most, whereas he was more aware of the technical side.

We liked Dr. Chang so much. We felt she was in the best hands. You could tell that he cared about her and was doing all he could to help her, which helped her get through all this.

The Importance of Having My Mom with Me During Treatment

Mary Beth: My treatments were on Friday afternoons. I worked a full-time job and would take Friday afternoons off to get the bladder installations in the clinic.

My mom would keep me company. I had to wait a long time to go in and get the treatment. Then I had to wait a little more, having it in my bladder, before I could leave. Sometimes my mom drove me, but other times she was there to accompany me then we would go back to my house.

I needed to hold the BCG in my bladder for two hours for it to work, which could be challenging, especially when you have sensitivity. It can be very uncomfortable. After two hours, I would go to the bathroom and let the BCG go.

I would have a pretty sensitive bladder for 24 to 48 hours. There was a lot of stinging, burning, and a frequent urge to urinate. I would try to take it easy and have fun, like watching TV, eating good food, and trying to enjoy myself as best I could to distract myself from it. We would usually do something fun that weekend, but those were six weeks in a row.

By my fourth or fifth treatment, I felt like I had the flu. I felt tired and achy, as if I had a low-grade fever, but not to the point where I couldn’t go to work or do things. I just had to rest a lot more.

At the time, I was 28, so I wanted to be active. I’m a pretty energetic person, but I was forced to take it easy on the weekends. My mom was good about hanging out with me and doing low-key activities.

Discovering Imerman Angels

Mary Beth: When I was diagnosed in 2014, especially that spring and summer, it was difficult to feel positive because I was worried and frightened. It was also hard because my family and friends were worried about me. I decided to join a walk for bladder cancer awareness in Lexington, Kentucky, with a lot of my family members and friends, and it was great.

Nashville doesn’t have a bladder cancer walk, and I thought we should because we have a huge medical community and great urology programs. I worked with the Bladder Cancer Advocacy Network (BCAN) to start the walk in Nashville in 2015. At this point, I was through the worst of my diagnosis and treatments.

What My Mom Didn’t Know While I Was Going Through Cancer Treatment

Mary Beth: Sometimes, I didn’t show how scared I was. I expressed how grateful I was that she came, but I want to reinforce that. It was a huge time commitment on her part to drive three hours to see me and spend time with me. They were even able to get a place in my neighborhood so they could be close by. To be spending so much of her time away from her other responsibilities was a major time commitment and I appreciated that.

I needed the caretaking, but I also needed a lot of positive energy. My mom is very upbeat. She tries to help with peace, hope, and faith. She’s a very spiritual person, and the spirituality that she brought and the conversations that we had during that time helped me get through. It was impactful to me, so I started my own journey.

Mary: I was sure she was scared, but she was brave. It’s very devastating emotionally and physically, but I felt like she would get through it and be cured of it. I also knew that if looked at correctly, this could teach her a lot about her inner strength and spiritual strength. I felt like we had the same goal. Whatever she shared with me was something for me to learn from, too.

My Advice to Fellow Bladder Cancer Patients

Mary Beth: The biggest thing that I can say is to advocate for yourself. When you know something’s not right, follow your gut instinct and persist through the medical system, though it can be challenging and confusing. Seek out other opinions. You don’t have to do this one certain way. Be open to other modes of treatment.

Expand your sense of care to family and friends who want to be there for you. Don’t feel like you have to be strong all the time. Allow yourself to feel vulnerable. You can feel scared and sad. Getting the help that you need to move through those feelings and finding the pathway that fits you best is a process.

My Mom’s Advice to Fellow Caregivers

Mary: Listen to your family member or friend because they’ll tell you what they need, even though sometimes they might not tell you directly. The doctors will give instructions post-treatment, but being with somebody who can care for you is powerful and healing.

Be there for them. Don’t take away their autonomy of how they want to go through this. Be a sounding board. Your fear will probably make you want to fix them quickly.

The lessons are there for both of you. If you can meet them where they are and go through it with them, the experience will have many blessings, even though it doesn’t seem like it on the outside. It could be the best thing.