Bonnie’s Story: “The greatest stress during all this time is not knowing how things will turn out.”

As a caregiver to her husband Larry, their journey took an unexpected turn in 2021 when what they thought was a routine prostate issue turned out to be bladder cancer. Despite initial misdiagnoses, a cystoscopy revealed the presence of a tumor. Bonnie emphasizes the importance of active involvement in appointments and procedures as being crucial for understanding your loved ones’ experience: “Have a frank discussion right up front about what all this means and be clear about what you both want.” Here is her story:

Larry was being treated for an enlarged prostate for several years before his bladder cancer diagnosis. The prostate issues – mainly pain with urination– began flaring up more frequently but Larry’s GP erroneously treated it as a UTI.  After several rounds of antibiotics, Larry was referred to a urologist who performed a cystoscopy and said those dreaded words, “We have a tumor here.” That was how the cancer was diagnosed, with frequency, urgency and pain.

That was 2021, and so after the cystoscopy, Larry was scheduled for a transurethral resection of bladder tumor (TURBT). He was in the hospital overnight for that. The doctor came to me after the surgery where I was waiting on pins and needles and said, “I’m going to have to refer Larry up the ladder to a urologic oncologist.” At that point, my hopes sank. I was hoping it was just something they could take out and we could move on with our lives. But that was a step onto a new whole new medical path for us.

After the initial TURBT, the tests came back as high-grade, aggressive carcinoma in situ.

At our very first appointment with the urologic oncologist, he gave us all the statistics for various treatment options. He said, “If we remove your bladder, you have a 95% chance that the bladder cancer is cured. But the BCG treatment is 70% effective.” Larry wanted to go with anything other than having his bladder removed.  BCG then was the first choice; eight instillations, one per week.

Subsequent cystoscopies, and Larry had many of them throughout this whole journey, never showed any visible sign of a tumor. They would even tell us things were looking good and we’d get our hopes up, sometimes producing tears of joy in the treatment room, but then the pathology would come back with different news.

I went with Larry to all the doctor’s appointments and procedures. I was a medical technologist for many years, and so am knowledgeable about lab results and am comfortable in a hospital and have also worked with patients. So, I think It was good to have me there, and my husband wanted me to be there too because you hear better when there are two of you listening to what the doctors say.

All the subsequent biopsy results indicated that the bladder cancer hadn’t invaded the muscle. Larry’s reaction was, “Oh, that’s great news.” Because of my medical background and study in science, I know that cancer is a microscopic creature, and it could still be there. I was holding my breath that it was not going to invade the muscle while Larry continued with treatments.

At the conclusion of the BCG treatments, they performed a biopsy.  Again, those would come back with cancer cells in them. So then it was like, “Okay, what are we going to do now?”

One of the interventions our doctor offered was chemotherapy — docetaxel, and gemcitabine.

We went through six or eight of those procedures which was very uncomfortable for Larry. We learned at the hospital which nurses to ask for because some were better at inserting a catheter than others. Some knew to ask for the pediatric catheter because, bless Larry’s heart, it was very, very painful for him. Each medicine had to be held in the bladder for several hours.

He soldiered on through the chemotherapy, and again, through cystoscopies. They also performed additional TURBTs where they put him to sleep and took a biopsy. Nothing ever came back that said, “Hooray, we’ve fixed it.”

Then, as a last-ditch effort, he tried Keytruda. We saw a medical oncologist in addition to the urologic oncologist, and he said, “Okay, let’s give it three doses and see where we are.” And so, after the third dose, the biopsy hadn’t changed. We were just kicking the can down the road at that point and Larry made the very tough decision to have his bladder taken out in March of 2023.

Larry had a radical cystectomy which is a big (seven hours) surgery. Before the surgery, he considered a neobladder. Through BCAN’s Survivor to Survivor program, he was put in touch with patients who’d had their bladders removed. He had long, useful conversations with a couple of different neobladder patients as well as those with ileal conduits. He understood after speaking with these men what the challenges would be, especially in the first several months with a neobladder. Ultimately, he decided to go with an ileal conduit.

Even right up until the surgery, the doctor came into the pre-op room and said, “Okay, what’s it going to be?” Larry asked, “If it was your dad, what would you suggest he do?” The doctor said, “I think you’re making the right decision to go with the ileal conduit.” So we both felt pretty good about that decision.

The day of the procedure was a long one. I spent the time with friends. We all sat and chatted and just waited for the phone to ring. I was exhausted because we had to get up at the crack of dawn that day, so I took a little nap. While I was napping, the surgeon called and said, “We’re all done. Larry did great.” From that point on, I was at the hospital as much as I possibly could. They told us to expect to be in the hospital for five nights, but it turned out to be just four. He was at the University of San Diego Hospital System Medical Center and the experience with them was wonderful, but he just wanted to go home.

Before being discharged, a wound ostomy care nurse came in and gave us a brief lesson on how to take care of his new ostomy attachment at home.

After Larry was home, we had the opportunity to see a wonderful ostomy nurse. I would encourage anybody who has to go down this road to make an appointment with the ostomy nurse and ask all kinds of questions. We went to see her four times.  She gave us samples of different ostomy products and then, of course, referred us to all the websites where we viewed their informative videos. I’m not sure if people try to figure this process out on their own, but I wouldn’t suggest it. I would say, get as much help as you possibly can. The ostomy nurses have specialized training and provide excellent care.

Larry never complained or second-guessed about any of it. Believe me, you could complain about this major life change if you wanted to. If you have a bag hanging off your stomach, and you have to change your clothing, because it leaks, you have a lot to complain about. But he was just a great patient, so that was a real gift to me that his mental attitude was positive. That’s very important for any kind of cancer diagnosis and treatment.

For a full year and a half, we went through all those procedures, tests, scopes, and biopsies with great hope. Your life is on hold because you can’t really make any plans. If a biopsy might be scheduled in two weeks, you wouldn’t know if the treatment might need to start again or what the next steps would be, so nothing like a vacation could be planned. The greatest stress during all this time is not knowing how things will turn out.

As a caregiver, you have a feeling of lack of control. Very early on when we got the diagnosis, I jumped on the internet and looked for support groups because I just knew in my heart that we were going to need it. And we found BCAN. I spoke to Karen Sachse (a BCAN Board member) on the phone, who not only was a caregiver to her husband, but she also had bladder cancer. She’s been through this before and has been a great shoulder to lean on and cry on if I needed to.

My church has a caregiver’s group, and suddenly, I was a part of it. It turned out to be a great support system. And then, of course, I leaned on the support of friends. I didn’t hesitate to share what we were going through with my friends because I knew that was the love and support I was going to need and I was going to get. I didn’t feel like I had to do it on my own. We didn’t have anybody else. Our parents are long gone, and our siblings live far away. So it was just the two of us fighting this battle. Open and honest communication is the absolute most important thing. I do some volunteer work with hospice. I lost a husband to cancer already once in my lifetime, and so the hospice people have been a great support system for me. And thankfully, I discovered BCAN and Karen Sachse. All these sources of support have helped a lot.

It wasn’t very long after Larry’s surgery for things to go back to normal again. We went on a driving vacation in May, which was two months after the surgery. Larry was nervous about getting on a plane and changing a bag somewhere other than home. We flew to Hawaii in November of 2023 and that went smoothly. You just have to take those steps and go through them and know that you can do it. Larry resumed normal activities such as going out for dinner and going for walks together, and he’s so happy to get back to golf.

Talking to other patients has helped him, along with the ostomy nurse and learning little tricks of the trade from her. We’ve also come up with a couple of things on our own that we hadn’t heard about before. We bought a stretchy elastic that he slips over his ostomy bag, so it doesn’t stick out too much. That has been a cosmetic thing that makes him feel less self-conscious.

From a caregiver’s perspective, it’s important to be involved in all the appointments and procedures so that you can have a sense of what the patient is going through. Have a frank discussion right up front about what all this means and be clear about what you both want. You should set your expectations and make them known.  For example, I wanted Larry to go ahead and have this surgery much earlier on than he did, but he didn’t. I agreed to support him in that. So he knew that’s where I was, that I was worried, but I was going to be there for him.

The best advice I’d give caregivers is that you are going to be needed and that you should allow yourself to accept help from others.