Burt’s Story: When I heard the words “You have bladder cancer,” it was a gut punch

I am a nephrologist and have been practicing medicine since 1976, so I look at my bladder cancer journey somewhat differently than others might.  I was having some difficulty urinating and in the process of having my prostate looked at, my doctor came out afterwards and said, “Oh, by the way, we found a bladder lesion, took a biopsy and I’m going to want to see you in the office in a week, so we can figure out what kind it is and what to do with this.”

I said, “Okay, that’s really too bad.” A week later we found out not only did I have bladder cancer, but I had muscular invasive bladder cancer.

Bladder cancer patient Burt and his dog

It was also a shock, because when you hear that you have muscle invasive bladder cancer, you’re committed down a route of radical cystectomy, and usually a course of chemotherapy prior to that. That started my quest towards reviewing the world’s literature on bladder cancer treatments.

To this day, when I think about receiving the news, I still have this sinking feeling. When you hear that, it can mean the potential for a very limited lifetime. And here I was getting ready to slow down and take some time off and be with my grandchild, and now I had a potential death sentence. If I couldn’t get the chemo, if I didn’t have the radical cystectomy, we were talking about a short number of years. In my case, I don’t think you can separate the doctor from the diagnosis because it just made it much worse.

I discovered BCAN when the urologist handed me a pamphlet and said, “You ought to go online and look at these guys.” And I did. I am interested in people how they’re doing with their neobladders, but I don’t want to hear about recurrences, I don’t need to be reminded of that.

As for the information I found from BCAN, I think it was good in the beginning to see that there were a lot of people in the same situation who were muddling through, and that’s what it is, it’s a long term muddle.

So as soon as I heard that I was going to need chemo and then surgery, and it was going to be quite a long drawn out thing, I went back to my New York City roots, having trained in New York as an internist, as a nephrologist. I said, “Where do I want to go, who’s really good?” I always think of Memorial Sloan Kettering and I also heard that the number one bladder radical cystectomy guy had moved from Chicago to NYU Langone, Dr. Gary Steinberg.

At the time when I was trying to decide who’s going to do my cystectomy. I thought “I’m not going to New York to do radical cystectomy – that’s going to be in the middle of the COVID epidemic.”  I asked around and in Portland, Maine, we have a really phenomenal oncologic urologist by the name of Matthew Hayn, who is a boarded oncological urologist. I think he trained at the University of Pennsylvania.

The local oncologist who was recommended to me by everyone was Dr. Christian Thomas, is a Columbia trained oncologist who specializes in urology. I saw him and he said, “You’re going to need a mediport, and you’re going to need to have MVAC, a dense dose MVAC. We could go with the other one gemcitabine and cisplatin, but personally, I think it’s better to get it over sooner rather than stretching it out. Even though the gemcitabine might be a little bit better tolerated, best to get the worst, get the full treatment and go for a cure.”

Dr. Thomas kept saying, “We’re hoping that we get it all, that it’s a cure. If it’s not, we’ll go on from there. That’s why you’re going through this four dense dose MVAC protocol, because that’s the way we kill all of that stuff.” And he was right.

The first dose of chemo I tolerated fine, except that I spiked a fever to 104 and had blood cultures done, and it went higher, and I was having shaking chills.  The oncologist on call said, I think you better go to the emergency room and get checked out because this doesn’t look good.  This was probably around day seven or eight after the chemo and my white count was down and was dropping, and my platelets were down to about 60,000 or 50,000, and my white count was too.  They put me in the hospital, the hospital where I have worked with the people I know, and I was treated like gold.

I was in the hospital for four days and required home IV antibiotics for three weeks after. We delayed the second round of chemo by a week or two and then I had three more cycles and each cycle, the cumulative effect gave me more nausea and that was okay because of the Ondansetron, Zofran and Lorazepam. By the fourth cycle, not only did I have horrible nausea and diarrhea, but I had glossitis and my mouth and tongue were just blazing.  I was doing swish and spit of a solution and horrible viscous lidocaine.

I also developed candida in my throat, so I had to treat that. After the last chemo and you ring the bell as you leave the day of the last treatment, and that was before I was really, really sick. But I rang the bell, I had no hair and I left, and it took me two full weeks to get over the  cumulative effects of that last round of chemo.  It was really rough, but the drugs helped a lot.

My chemotherapy preceding the radical cystectomy was supposed to be eight weeks and it was closer to 10.  As the news of COVID in New York blossomed, I thought “The place I should be really is not New York – it’s Maine Medical Center because all of my friends are there and the hospitalists will take care of me and protect me and it’ll be good.”

We made the decision and my son rented a house in South Portland for several months, so that he could be around for chemo and for the surgery. That was a big help for my wife, who was a basket case. I was coming home from chemo just wiped, going to bed, and the only thing that I was able to tolerate in the way of food was chicken soup with matzah balls.

I lost 40 pounds.  I had no desire to eat and with the nausea, I could have gone days without food. People were making trips to Connecticut to get the soup from this one place where they make really great chicken soup.

I had my radical cystectomy about six weeks after the last round of chemo.  I opted for a neobladder.  I had flawless surgery.   Waking up, I remember them saying “It’s time to get into the bed.” The operation was seven plus hours. The first thing that my wife said is that, “Dr. Hayn said that the neobladder just popped in just perfectly. Sometimes they have to wrestle to get it in, but yours just popped right in.”

As to why I opted for the neobladder, I am a water person, I love swimming, I love hot tubs, hot showers and I couldn’t imagine wearing a bag and doing those things easily. There’s this old joke, how could you find a pair of shoes to match your bag?  So, I chose a neobladder, but knowing that it was more difficult and comes with its own set of problems.

As for my surgery, I was in the hospital only four days.  With the epidural, I never had any pain.  They gave me Marcaine and Dilaudid in the epidural. I did very well, overnight, I just went back to sleep. The next morning, they said, “Okay, time to get up.” And I said, “What?” And they got me up, the side of the bed and they had me walking with my PCA pump. They got me up walking and I was fine.

On the third night, when I was looking up and I started to see movies on the ceiling. I was hallucinating.  I called the nurse and they said, “Oh, we’re going to lower that dose in the epidural because we think you’re getting a little bit too much.”  I said, “That’s a good idea.” That was the only thing that happened to me during the four days, I had no pain, they took out the epidural, I felt fine.

My surgery was done where I worked at Maine Medical Center.  That was very shocking to my colleagues because other doctors didn’t know that I had had chemo or had my bladder removed or who didn’t know I had lost 40 pounds, or I didn’t have any hair.  I was very shocking for them.  I looked like I came from Auschwitz.

After the surgery, the pathologist said “Burt, I just finished slicing and dicing and your bladder, except for one minute piece of carcinoma in situ, there was absolutely no cancer left to worry about, so that you are essentially cured, you are disease free.”  That made it all worthwhile.

I got out of the hospital at the end of April, which in Maine is still winter, it was still cold. I still had a Foley catheter for three weeks, so I wasn’t going anywhere, and I wasn’t doing anything but watching TV and sleeping. I still had tremendous fatigue from the chemo and I still do. My mind only came back over the summer of being any degree of clarity. I had physical therapy for the first, probably, four to six weeks and basically it was to get me to stand up, walk around the apartment, use some stretch cords and then go back to sleep.

I would say that it was almost two months before I went out of the house for any reason, and that was only to go for walks outside with my grandchild in the woods. I had no ability to walk any distance and that has gradually gotten better in the last two months. It’s been seven or eight months since the operation and only in the last month or so have I been able to really get back to being me, being normal. I have started the physical therapy with the Kegel Whisperer, I did that starting probably August and that has worked out well.

Over the last few months I have started to get onto an Exercycle  and more recently I’ve been doing the elliptical. And at first I could only do 10 minutes on the lowest setting and go back to sleep. Now I’m up to 20 minutes on the Exercycle and I need to take a nap, and that all has to do with having a dense dose MVAC.

For people facing a radical cystectomy, I would tell them “If you want to live, you have to do it.  How long do you want to live, is five years enough? Because if five years is enough, followed by gradual decline, then you don’t have to do it, just get the chemo. If you’re not going to do chemo and you’re not going to do cystectomy, you got two or three years, depending upon what’s going on. It depends upon how old you are and how vibrant you are.”

I’m still working. I have a two and a half year old grandson and I want to watch him grow up, so I have to do everything, plus my wife would’ve killed me if I hadn’t had my bladder removed.

The big question is neobladder versus ileal conduit. I chose a neobladder because I wanted to be able to not have a bag and to be able to go on a hot tub.  If I can’t do that and I can’t go in the water with a bag, then I’ve taken away half of my life, so I chose the neobladder.

I spoke to three people about their neobladders. They were all happy, but they said, “You have to be aware that you’re going to be wet for a while.” The neobladder contains 200 CCs of urine, not a lot, especially for older people who have some degree of peripheral edema at night, just from fluid accumulation. I pee every two hours throughout the night and throughout the day, which means that I’m waking up with the sensation, that there’s a little tiny bit of urine coming through my penis. That’s how I know that I have to go.

I Kegel and run to the bathroom, I pee and go back to bed, but I’m sure it messes up with my REM sleep.  It has been doing that for the past six months and so I am constantly fatigued and I’m constantly tired. I would say that in the beginning I would wake up having wet the diaper and the towels down to the plastic sheet on the bed. That doesn’t happen often anymore. I still have a significant degree of E.D. refractory to the “blue pill.” A psychological hurdle that I will deal with.

The Kegel exercises are working and my quality of life has improved, particularly during the day.  I am out of diapers and usually can get by with just a pad to take care of surges. I will need to keep up with my exercises.   My fatigue persists and it is difficult to get the energy to push myself to exercise.  When I complained of constant fatigue, my oncologist told me to get out of bed and to exercise which appears to be the only solution for post-chemo fatigue.  I am getting better slowly.  I recently had a CT of the chest, abdomen and pelvis which came back completely clean.  Definitely worth all the suffering!