Judith Guiliani: A Caregiver’s Perspective
Rudy Giuliani’s wife discusses her partnership with her husband during his prostate cancer journey and their team approach to the experience.
Judith Giuliani knows a thing or two about healthcare. She is trained as a registered nurse, and her extensive medical and scientific background includes work for Bristol-Myers Squibb and special training in the area of infectious diseases. But even so, she says, no amount of background or experience can prepare you for a cancer diagnosis of your own or of a loved one.
Judith faced just this reality when, in 2001, she and her husband, former New York City mayor Rudy Giuliani, met the challenge of his diagnosis with prostate cancer. “I think it’s overwhelming for everyone,” Judith says, when asked about her and her husband’s reaction, “and I think there’s always a little bit of denial at first. I think that’s normal. You have to give yourself some time to accept what’s happened.”
Even her husband, she says, so accustomed to processing difficult information and handling intense situations in his years as mayor of New York City, was thrown when he received the news of his diagnosis. “When Dr. [Alex] Kirschenbaum [Rudy’s urologist] called him, he actually said, ‘Well, Rudy, I have something to tell you, and the results are positive.’ And just to show you how nobody is ready to process this information initially, Rudy said to himself, Positive . . . positive’s good, right? Positive’s great. Oh, great—positive. Moving on. And then of course he realized that positive was in this case quite negative.”
From that point, Judith says, it became her job as the caregiver in Rudy’s life to focus on the “good facts” about prostate cancer as the couple moved forward toward researching treatment options and finding the medical team with whom they felt most comfortable. Judith’s medical training and her ability to focus on the positive aspects of their situation were particularly helpful, especially in light of Rudy’s family history: his father had died of prostate cancer in 1981. “That was a huge, looming shadow,” Judith says, “and as the partner it became my job to focus on the fact that [Rudy’s was] a slow-growing cancer and that we caught it early.”
As she and Rudy began researching treatment options and interviewing physicians, Judith was very aware of how fortunate she was to have had medical training. “One of the most important things people can do [after a cancer diagnosis] is to educate themselves,” she says. “Medical terminology is essentially—no matter how smart you are—another language. And when someone starts throwing words at you like oncology and hematology and urology, you don’t have any idea what all of those ‘ologies’ are. You are just overwhelmed.” Being thrust into the world of medicine and science without any previous exposure to the language and the procedures that will be your daily experience after your diagnosis can leave you feeling confused and scared, she continues; and taking advantage of the incredible amount of information now available on the Internet and through your physician and treatment facility resources and educating yourself from the beginning can empower you.
Judith also realized the important role that an advocate can play for a cancer patient when proceeding through diagnosis and treatment. “That would probably be the single biggest piece of advice that I would give to anybody—to take an advocate with you so that somebody else is hearing the words that you can’t process at this point and is asking the questions that maybe you won’t think to ask.” If you don’t have a partner, Judith says, consider a visiting nurse or medical assistant who might provide the services of an advocate in your area, or inquire at your treatment facility to see what resources it might provide.
The next step that Judith and Rudy took together—after managing the emotional aspects of the initial diagnosis—was to decide on the best possible medical team and the course of treatment that would best fit Rudy’s diagnosis and lifestyle. The couple ultimately spoke with approximately a dozen specialists before they found the doctor with whom they were most comfortable. They made the decision for Rudy to begin Lupron® (hormone therapy) treatments to arrest the cancer—to allow them to fully investigate the available treatments and physicians—and so they felt that they were already taking an active step in Rudy’s treatment as they researched all of their options.
With this therapy under way, and with the desire to thoroughly understand of all of their treatment options, Judith says, the process of the research itself became therapeutic: “It was part of the acceptance process. As you’re going through this, [the cancer] becomes a little more abstract, a little more scientific, which helps tremendously. Everyone expects a decisive leader—someone like my husband—to appear that he never questions what his next move should be. But in the case of your health, you are exactly the same as everyone else, and you’re just as scared as everyone else. It’s the ultimate equalizer.”
As the couple analyzed Rudy’s treatment options, they carefully weighed his diagnosis, the opinions of the doctors they met, their lifestyle, and the various side effects associated with each treatment. “The most important thing for us was to consider all the [treatment] options,” Judith says, “because for each person and for each person’s lifestyle there are varying options. And one of the things we would do when we would meet with physicians is to ask each doctor to tell us the upsides and the downsides [of each treatment]. I would always write down the statistics, and eventually I compiled a spreadsheet. I know my husband is both brilliant and analytical and relates best to those things, so that’s what I did. I put it all together: this is what these surgeons say; this is what these oncologists say; this is what these radiologists say. And ultimately, of course, you also make your decisions based on some gut feeling that everybody has no matter how much science and how many statistics you put together.”
For Rudy, who ultimately chose Dr. Kirschenbaum, the final treatment decision was for radiation seeds, external radiation, and hormone therapy. Having made the treatment choice, Judith and Rudy had also come to realize how important the relationship with the physician ultimately would be for them. “This is a lengthy treatment,” Judith says. “It’s something very personal; you want to have some sort of relationship with the physician, and Rudy felt a real simpatico with Alex Kirschenbaum.”
Throughout Rudy’s diagnosis and treatment, Judith says, their focus as a couple was to remain positive. “My husband had a fantastic attitude. We always knew he would get better. We always knew he would be fine. That’s how we felt. Did we really know that? Of course not. But we felt that way and we proceeded that way. And I think that had a big impact on him.”
Judith also acknowledges that her participation in Rudy’s journey helped her cope with his illness. “Becoming such an active part of Rudy’s treatment helped me in this process; making the spreadsheets, asking questions, going on the Internet, getting involved—it empowered me. It kept me from feeling helpless, and that’s probably one of the hardest feelings for the partner in any cancer situation, and certainly in any love or marriage situation with prostate cancer because ultimately the outcome will affect both of you.” Rudy’s open communication with Judith about his needs during this time and his encouragement of her participation in his care, she says, made her feel like a valued partner in his experience.
As Rudy and Judith communicated openly about his diagnosis and proceeded with treatment, Judith was again grateful to call on her medical background. As a nurse, she remembers being taught to be “the one to ask the difficult questions.” This lesson, she reflects, has served her well throughout her life, and she was glad to draw on it during Rudy’s treatment. “That would be one of the most important things I would tell any partner in a prostate cancer situation: if the doctor isn’t saying what the patient isn’t asking—all those “i” words—these are really important issues. Some physicians are more comfortable than others in discussing them, and some patients are more comfortable in discussing them than others; and I think if you can make yourself ask the difficult questions and put the onus on yourself and not on the other person—because the other person is already sitting there in a state of mental shock—the more difficult questions you can ask, the better. Be the one who asks “what if?” because it can be such a relief to the other person to know the answer.”
Rudy’s diagnosis and the journey that followed resulted in what the couple can now see was an opportunity to take stock and reprioritize. “When you live through a situation like this together,” Rudy says, “it certainly does prioritize what’s important in your life, and it absolutely deepens your relationship. You’re very lucky when you’ve lived through a situation like this—and I don’t mean lucky in the sense that you’ve dodged a bullet; I think that you’re lucky in that in some ways you’ve put a hold on your adult life for a moment and you do something that many of us never get to do, which is reflect.”
Acknowledging that she and Rudy both felt extremely lucky to have each other throughout the experience, Judith stresses the benefits of sharing the emotions and the physical challenges of a cancer experience. Because of Rudy’s position in public life, they had the opportunity to hear from many other prostate cancer survivors and not only learned a lot about physical side effects but also benefited from sharing their personal experience and listening to those of others. For individuals experiencing a cancer diagnosis without a
partner, Judith encourages participating in online chat rooms or support groups that provide forums for talking to other survivors and caregivers.
Rudy and Judith continue to share their experience with others whenever possible. Now cancer-free, Rudy speaks to other survivors and participates in cancer charities, as does Judith. The couple is incredibly busy these days, and Judith laughs as she says that her husband’s full schedule should be encouraging to any prostate cancer patient. “I call him the Energizer Bunny,” she says as she describes marathon trips to Australia and their shared love of golf—which they try to fit into their trips abroad whenever possible.
As a caregiver, Judith continues to monitor Rudy’s health, taking care to keep him “on the straight and narrow, with a low-fat diet, full of lycopene” and keeping tabs on other nutrition and wellness topics that can help him keep a proactive watch on his health. And it’s a good thing that Rudy has Judith on his team, as the former mayor is much on the move.
Indeed, the couple had just returned from Iceland the night before I spoke to Judith on the phone, and Rudy had arranged to join us on the call from Washington, D.C., where he had been in meetings all day since their return. As we get ready for him to join our call, Judith’s voice changes, excited to hear from her husband, and it’s clear to me that this is a couple who take great joy in each other’s company.
When Rudy gets on the phone, it’s clear that Judith’s description of the importance of their truly open communication and of her participation in his care was indeed critical to him during his diagnosis and treatment. “It’s the most important thing that you can have to get through cancer,” Rudy says of his wife’s support. “I felt so fortunate to have not only someone who loved me and cared about me but also someone who was an expert with an enormous amount of knowledge of medicine and science—she was the single biggest support that I had.”
Rudy is also emphatic about his appreciation of Judith’s willingness to communicate openly from the beginning. Like many men, he did not want to burden his partner with the responsibility of the situation, but he soon came to realize that the best route to the support he would need, and to helping Judith cope, would be to share his feelings. “I don’t like to impose whatever’s going on with me on other people. In my case Judith made it very easy because she talked about it and she asked me and she made it comfortable for me to share with her what I was worried about.”
His experience, he says, leads him to advise partners of men diagnosed with prostate cancer to be similarly open with their partners. “My advice to the spouse is to explain to your husband that you want him to [talk to you] and that you’re not going to hold it against him or feel that he’s any less of a person or less a man. And you also have to realize that vulnerability is part of life, the strongest person in the world has fears and vulnerabilities, and all of them make you human and not less strong.” Again, he reiterates, in his case Judith made it clear that she wanted him to express those things to her, which made the experience so much easier. “If [your partner] loves you, they’ll want to know what you’re really going through, not some fictionalized version. When you really love each other, it will bring you closer.”
Ultimately, Rudy says, his diagnosis with prostate cancer—combined with his experience of September 11—has given him a different perspective on the value of life and all that he has. In speaking with Judith and Rudy, it’s evident that this couple continues to value the perspective they have gained and continues to be thankful for each other as they work together as a team in life. Now on the other side of treatment, they take joy in the days they are afforded together and the excitement of the busy life they lead.