Kathy’s Story: “I kept thinking, ‘I am on this train, and I don’t know where I am, and I don’t recognize the scenery of where we are.”

Upon discovering blood in her urine, Kathy Whilden sensed things weren’t right. To her surprise, she not only faced kidney cancer but also a simultaneous diagnosis of bladder cancer. The revelation was startling, especially considering she hadn’t experienced any discomfort. Recognizing that health challenges might emerge with age, Kathy remains grateful for the life she continues to cherish: “There are a whole lot of things that could be wrong with me that are not.”

Here is Kathy’s story:

It started out with difficulty in breathing, and I was taken to the emergency room and found I had a bilateral blood clot in my lungs. The doctor couldn’t figure out what started it.

I was sent from my community hospital to Stanford Intensive Care, and it then seemed to resolve itself.

I came home, but I discovered blood in my urine that the doctor thought was related to the blood thinners. I went to my PCP, and he said, “Oh no, this is really serious.”

Within a week, he had set up a CAT scan, an ultrasound, and an appointment with a urology clinic.

That’s when it was discovered that I had kidney cancer. I went through a biopsy, a surgery biopsy, and had my kidney removed. Then, I had a cystoscopy of my bladder, and eventually, I was told I had non-muscle invasive bladder cancer and that it was related to kidney cancer. That’s how it started. I was really surprised.  I didn’t feel any discomfort at all, even with the blood clot when I was in the emergency room.

That was 2021. I’m now in year three of trying to figure this out.

My first TURBT (trans urethral resection of bladder tumor) was in May 2022. The surgery was set up for blue light and then a chemotherapy wash afterward.  I had an extremely painful reaction to the blue light infusion, and it had to be removed from my bladder within 20 minutes. The surgeon then did the surgery with full anesthesia as planned.

I had a lot of pain coming out of surgery with the chemotherapy wash. They took out the catheter and I couldn’t urinate properly.  It took an hour and three different nurses to reinstall the catheter.  I was in extreme pain and felt like I was dying. I was sent home to recover. I had the catheter for 6 days at home.

My second TURBT was in December 2022 and was much easier. There was no blue light or chemotherapy wash involved. I again had a catheter for six days at home.

In October of 2023, I had my 18th BCG treatment. I had six rounds, and then they did a cystoscopy, and the cancer was back, so they decided to do another round of six. After those six treatments, the cystoscopy was clear with no signs of cancer. They followed with two more three courses of treatment. Part of the reason for the reliance on BCG is because of my age, and I’m not a candidate to have my bladder removed at 83. It’s too tricky. Chemotherapy would probably be the next step.

Just a couple of weeks ago, the pathologist said there were broken pieces of cells that they couldn’t identify. They couldn’t say it was cancer. They couldn’t say it wasn’t cancer. And I was scheduled for more BCG. The doctor then said, “It’s your choice. We can do another surgery, TURBT, or you could just continue, and we’ll see what happens next.”

I then talked to the palliative care doctor and decided to continue the treatment I was already receiving. He told me I chose the right way because unless they have a positive cancer diagnosis, surgery is always risky.

I’m in a cycle of my three weekly BCG treatments now, and then I’ll have a cystoscopy. Then, if it’s clear, I will go back to BCG. If it’s not clear, I’ll have a TURBT and a decision will be made.

I realized there were no in-person support groups in my community anymore because of COVID so I started looking on Facebook groups for information and found BCAN’s support groups, one for women with bladder cancer and one for just bladder cancer. I was just looking for information, and BCAN had the most coherent information. It was like, “Where am I on this train?” I kept thinking, “I am on this train, and I don’t know where I am, and I don’t recognize the scenery of where we are.”

Probably the most helpful thing to me was BCAN and the palliative care doctor who supported me. I keep a list of all the things I say no to because it sort of makes me feel like I have some say in this process. I don’t just say yes to things unless it seems like there’s a good possibility it’ll work, and it won’t cause me pain.

It’s not unusual for people my age to die and I’m really healthy. I take medicine for high blood pressure, cholesterol, and thyroid, but those are the only things I take pills for. I don’t have diabetes. I don’t have Parkinson’s. There are a whole lot of things that could be wrong with me that are not.

It’s very important for bladder cancer patients to learn as much as they can. I felt as if I did not receive a lot of help in terms of managing my diagnosis, so for me, what was helpful was to write things down. I keep a blog. I write my blog every day. I have family and friends that I can talk to. My three children and sister are there when I need them.

Figuring out how the medical system works makes it easier to accept the treatments. You have to tell the doctor what you need. One of the things I needed was for them to slow down and talk to me. So now I tell the urologist after the cystoscopy that I need a minute to get off the table, get dressed, sit in a chair, and then they can come back in and talk to me. I can’t respond when I’m lying exposed on the table and a camera has been stuck up my bladder. I need time to pull myself together.

If you’re a writer, write it. If you like to draw, draw a picture of it. Somehow get some control over your care.