How to Get Through Really Awful Things, Be a Smart Partner in Your Own Care, and Even Keep Your Sense of Humor
Here’s what you might not have in common with Paul Calobrisi: His cancer didn’t start in the prostate. It started in the bladder and included the prostate.
Here’s what you may have in common with Paul: He is persistent. He had to be his own advocate, and he was relentless in learning everything he could – not only about his illness, but about the best possible treatment. He has kept his sense of humor. He also has dedicated himself to getting his life back, and this means that he’s pushing himself and his rehab. He is doing this because he wants to be here, and be strong, for his family. And one more thing: He has seen way, way too much cancer.
Paul’s journey began in 2001, when his mom was sick. That’s when, he says, “I started to be an advocate in the whole oncological merry-go-round. Suffice it to say that didn’t finish well, and she died in April 2001.” The experience taught him “what it was like to advocate for somebody who was not capable of doing it for herself.” Paul was no stranger to hospitals – his father was a doctor – but he had never seen the patient side of things up close and personal. “It was baptism by fire.”
Paul’s mother had neuroendocrine cancer (small cell lung cancer). His wife died of the same kind of cancer (pancreatic neuroendocrine cancer) a year and a half ago.
Time travel to 2007. Paul, a native of New York, is living in Milan. He is recently married, and has a young daughter. One day, he had blood in his urine. He called a local doctor’s office, and “they were not very alarmed,” he says. “They should have been more alarmed.” Blood in the urine “is not a very easy thing to deal with when you‘re a man, because that’s not part of our normal plumbing activity. We freak out a lot easier.” Ten days later, it happened again, and good thing it did, “because I never bled after that, and I wouldn’t be speaking to you right now.”
Paul went back to his doctor, who arranged for a cystoscopy and CT scan. “They were rolling me down the hallway and brought me a clipboard, and said, ‘You’ve got to sign this. We found a shadow in your bladder, and if we go in and we think it’s appropriate to remove it, we’re going to remove it.’ I said, ‘I don’t know what that means. But I signed it, and I woke up much later. They had found an almost-3 cm tumor inside my bladder. You can tell by the face of the doctor, he was not happy about that. They removed it.”
Paul believes this speedy removal of his tumor saved his life. When the pathology came back, he broadened his treatment options. He needed surgery to remove his bladder, and also chemotherapy. “I decided I was going to target institutions in America,” he says. “A couple hundred e-mails later, it was between Johns Hopkins, Memorial Sloan Kettering, and Cornell. I had picked the specific doctors, networked, used social networks. I went crazy.” He called urological surgery departments and “actually spoke to head nurses. My dad always used to tell me, ‘Don’t ask the patient, ask the nurses.’ We talked in an informal way about the doctors, and I narrowed it to the guy I wanted.”
That was urologic surgeon Bernard Bochner at Memorial Sloan Kettering, for several reasons: “His age, his reputation, the articles he had written, and the fact that I had family in New York.” Paul, his wife and two-year-old daughter went to New York in June 2007. It was not an easy trip. “My wife was starting to get into serious PTSD from the original trauma of the disease, and was starting to become very disillusioned and confused.” The doctors in Italy had given him an expected lifespan of 10 months. Paul was 45, and otherwise in excellent health. He said to Bochner: “We’re the same age. What would you do?” Bochner’s answer: build an internal bladder, called a neobladder, out of a stretch of intestine, but that will depend on the extent of your cancer.
Paul had a medical oncologist, as well, but he did not like him. “That’s another thing,” he says. Paul had read articles in the New York Times about “your relationship with your oncologist and the success of your outcome. It makes a ton of sense. My oncologist was just giving me drugs. I leaned on my surgeon.”
The day before his birthday, Paul started chemotherapy, with Gemzar and Cisplatin. “All I knew was that this was the chemo that killed my mother in 2001. I totally freaked. My mom died within a few hours of getting those drugs.” Meanwhile, his lack of connection with the oncologist kept getting worse.
“That is absolutely not happening.”
Here is a sample conversation, recounted by Paul, between himself and the oncologist.
“How do you feel?”
“I feel shitty. Look at me, I’m gray.”
“Can’t you just say you feel good once?”
But the urologist, Bochner, had an excellent bedside manner, Paul says, which “helped me a lot. We blew through the chemo and set a date of October 16, 2007, for the surgery.” He went back to Italy and went fishing for three days by himself. Then he came back to New York for his surgery.
He had muscle-invasive T3/T4 cancer. “They really weren’t sure how far it had gone. It was deeply muscle-invasive, but micrometastatic if it was metastatic at all.” Bochner laid it all out: “He was very straight with me. He said the chemo may or may not have worked. When we go in, I’m not sure what’s going to happen.”
The rest of the conversation went something like this:
“You could have a tube in your navel.”
“Oh, f—.”
“We may have to put in an exterior bag.”
“No. That is absolutely not happening.”
“We may have to take off other very delicate parts. When you wake up in recovery, just put your hand down there and we’ll tell you what happened.”
Paul was scared. Of course he was scared. “I wanted the neobladder. I wanted everything else to be intact, but I knew they were going to sterilize me and take out my prostate, along with other possible complications. Most surgeons are not just concerned with the quality of life, but saving your life. You have the whole discussion about the nerve-sparing,” surgically preserving the nerves that are responsible for erection, which lie in bundles on either side of the prostate. “There are men who don’t have this surgery because they are afraid of impotence. They don’t have the surgery because of that. Now, because of Patrick Walsh (who invented the nerve-sparing procedure) and the Hopkins guys, it’s very much in your favor if the cancer is detected early enough that nerve-sparing is successful.”
Paul did have a nerve-sparing radical cystoprostatectomy, in addition to having the neobladder created. “They removed 70 lymph nodes. The survival mathematics are, the more lymph nodes you have in the muscle-invasive stage, whether or not they come out clear in the pathology report, that gives you other potential complications (such as edema, or fluid swelling). I fortunately have not had any of these drainage issues, which means other lymph nodes have kicked in.
“I woke up and did exactly what he said to do,” put his hand down to feel what was left, “and I said, ‘Oh, my God! At least the important part, they saved!’”
Recovery was not easy. “Because I had a new bladder, I had to be catheterized for a month, and you have to have a third party rinse your bladder from the outside through the catheter three times a day to get the new bladder ready, because it’s a piece of intestine, and it doesn’t know from urine, or from anything else.” When it was time for the catheter to come out, another complication set in: peripheral neuropathy, a side effect of the cisplatin. “We knew it was a possibility,” and he still struggles with it.
But that’s okay. “I was so behind the 8-ball, I can’t be more than thankful just to be alive,” Paul says. “In Italy, they say the game was 2-0 and in soccer, that basically means you’re done.” Bochner kept him encouraged. “Every time we turned the corner, he was more and more positive.” When the pathology report came back, Paul and his wife were at a shopping mall on Long Island. “It was one of those moments you never forget. It was Sunday morning, and it was Bochner’s cell phone. I thought, ‘Oh, shit.’ He was very choked up, and he said there was nothing on the path. Absolutely nothing on the path. He said a number: ‘All right, buddy. Now you’re at 84.’ That meant there’s an 84-percent chance I would make five years.”
And then his wife got sick. “She had a very aggressive pancreatic neuroendocrine tumor, 8 cm when they found it.” She died less than three years later.
“You get to the finish line. Then what?”
During his “eight years of melodrama,” Paul has learned a lot of things. A major lesson is that “oncology is an extremely subjective world. When my wife got sick, I was definitely prepared to be the advocate and do the research. Unfortunately, what was a really optimistic beginning turned out to be a really horrible finish. It was not the way anybody wanted it to go.”
Another thing: His sessions with oncologists focused on remission. But what about living post remission? This is called survivorship, and the PCF is very interested in helping survivors put their lives back together after treatment. Because, as Paul puts it, “You get to the finish line. Then what? There’s definitely a drop-off in the whole oncology business, in their interest in you at that moment. You still need a lot of help. There’s a lot of collateral damage that has happened along the way. There’s the whole psychological part, the professional part that nobody ever talks about – your own professional life. When you’re in the midst of this battle, it’s very hard to be a 12-hour-a-day consultant. You cut back.”
Employers and colleagues are understanding – “but only to a certain point,” Paul says. “You get a pat on the back: you’re a great survivor, a great advocate for your wife. Now what? People have very short memories of what you went through along the way. There’s a slough of medical things that happen.”
His neuropathy affects his gait. Paul has had to relearn how to walk, run, and swim. “There are heart issues that nobody really tells you about. Nobody talks about sexual rehabilitation. That’s the dirty secret after prostate cancer surgery. These guys get thrown under the bus.”
Men just don’t want to talk about it, and yet, they really need help. “Guys just go forward, and the longer you wait with surgically caused ED, the worse it gets. It’s also not just for the men to know; it’s a lot of issues with partners. There are whole social implications when you’re a single person and you’ve had cancer, and you meet somebody you like. People don’t focus on that.” Worse, to some people, “saying that you have had cancer is like shark repellent. It’s a huge deal, and not enough good attention is given.”
Jonathan Simons, M.D., medical oncologist and CEO of the Prostate Cancer Foundation, says that Paul and people like him “are the example of what’s best in the human condition when you’re diagnosed with cancer. He was proactive about being a partner in his care. Even as he was going through all the uncertainty and fear, he was actively interested in understanding at each step what the choices were, and what the reasoning was for the next treatment. He was willing to endure all of this so he could be there for his family.
“The guy’s incredibly courageous. Many people might be completely broken by what he’s gone through, but he’s got a scintillating sense of humor. He’s also really inspiring. These are the people we are privileged to care for, people who inspire the physicians and nurses around them, and who also make us reflect a little about what it’s like to be resilient and good.”
One More Extremely Important Thing
In 2007, the afternoon before Paul had to get on a plane to come to New York for his surgery, his urologist in Italy called. The doctor, Paul says, was a bit miffed that Paul was leaving to have his surgery done in America.
“He provoked me a little, and said, ‘You know they’re going to sterilize you. Their protocols are going to have an effect on your DNA. Even if they go in there afterward and retrieve the sperm, there’s a good chance your DNA will be altered.’”
Well, that was great. Here it was, four hours before end of business on the day before he leaves the country. The urologist continued: “Listen, I’m going to call the sperm bank here in Milan. Go there immediately.”
Paul was no expert on sperm donation, but it seemed to him that “some sort of protocol was in place,” to make sure the sperm would be in top shape. “He said, ‘It’s all bullshit. Just go to the sperm bank, ask for this nurse, and leave it.’ So I went, and I left a specimen.” Paul sat in a room full of guys not making eye contact with each other. Afterward, “to add insult to injury, they take a quick look at it,” to evaluate the sperm’s motility. Paul had to listen to comments like, “Ooh, these guys are slow, we don’t know if they’ll make it.”
“I have to get on a plane,” he said. “This is the best I can do.”
“Okay, we’ll just freeze it.”
This is yet another thing that nobody talks about, Paul says, “the whole reproductive issue when a man does chemotherapy. People will try to blow you off and tell you that ‘Even though we’ll take out the seminal vesicles and all reproductive organs except the testes, we can go in and retrieve the sperm from the testes.’”
Although that can work, it is a difficult, delicate process, and success is not always guaranteed. The very best way to make sure you have some sperm, if you think you might be needing some for purposes of having a child, is to freeze it ahead of time.
Paul knows this because he has a son now, made possible through in vitro fertilization. “My wife was 47 when she had him. My seven-year-old son is a frozen sperm baby.”
His beautiful son is asleep on the couch. His daughter is just home from choir practice after school. Paul still struggles with peripheral neuropathy, and is recovering from a hernia operation that should have been a 30-minute piece of cake and instead was a four-hour ordeal, because the tissue in that area was messed up from his surgery and the chemo. But he’s recovering, he’s alive, he’s here for his kids, and life is good.
By the way, we have some very good information on penile rehabilitation and help with ED after prostate surgery right here on the PCF website. In case you’re wondering, we gave Paul the link, and he said it was good. “Nobody tells you this stuff.”
