David Lehman and his wife and caregiver Stacey Lehman-Harwood have lived in New York City and Ithaca for decades. They have held teaching positions in NYC, and are part of a large community of poets and writers in both locations. In November 2013, David began feeling symptoms of bladder cancer. He consulted a urologist in Ithaca and had blood tests. In February 2014, when the symptoms returned, David had a cystoscopy.
“The first thing I did when I got the diagnosis was have a double martini,” David said, adding, “They knew they were treating me for bladder cancer a lot sooner than I knew that was going on.” Stacey explicated, “That’s not because they kept anything from him, but they didn’t use the terms. Instead they said he had a cyst that could easily be removed.” In some ways, Stacey and David felt relief once they had the definite diagnosis. David continued, “At least you know what the problem is.”
Stacey noted that it is common for people with bladder cancer to experience symptoms for a few days or weeks, only for the symptoms to disappear for a while, leading to a later diagnosis. In addition, some primary care physicians don’t automatically think that cancer is the culprit, even though blood in the urine and no pain are common signs of early bladder cancer especially in older patients. David’s primary care physician originally prescribed antibiotics because he assumed David had an infection. The same thing happened to Stacey’s mother, who was also recently diagnosed with bladder cancer.
When speaking about David’s diagnosis, Stacey said, “I was in shock, because I never imagined cancer would be in our lives. It happened sort of gradually because when he first saw the urologist, he said it was probably what they considered a polyp, no big deal, and that’s the case for most bladder cancers. Then the diagnosis showed it was the invasive cancer, I freaked out. I had no clue that this is what we were in for.”
Stacey depended on family and friends during this time, especially those who had experience with cancer. They would know the right things to say. Fortunately, David and Stacey’s close proximity to Sloan-Kettering allowed David to go there for treatment with relative ease. In addition, as Stacey built a network of people who had experience with cancer, she received a recommendation for a great doctor at Sloan-Kettering who turned out to be a great match for David’s needs and care.
David and Stacey’s journey through the stages of cancer treatment shine a light on both how cancer treatment can be improved and how they developed expertise in negotiating David’s treatment over the last three years. David confided, “I think that in my case to absorb the blow, I didn’t necessarily confront it in the most direct way. I absorbed it, I went with it, I did what the doctors recommended. I had the procedures and there were quite a few, and scans, tests, surgical procedures – some of them very disagreeable.” There were also times of stress that were produced by simple interactions that David and Stacey had with doctors, including a few disagreeable times when doctors made comments that were downright inappropriate. For example, they were reassured that if David “was going to have cancer, this was the good kind” long before the doctor knew just how extensive the cancer was or what treatment procedures David was going to have to go through. Another time, when David’s symptoms were so severe that they landed him in the emergency room, the doctor told him that his severe pain was “payback for all the pain a woman goes through” like menstruation and childbirth. Because of these frustrating experiences, David and Stacey learned that one must be diligent in securing excellent care and be prepared for the unexpected.
David devoted much of the last three years actively working on his recovery, while also being “determined to work during the stretch [of the three years], so that even when I was in a really bad way, I managed to work, if only for a few hours a day.” David is a renowned writer and editor of contemporary American poetry, and started The Best American Poetry series in 1988. In the world of poetry, the book is looked forward to with much anticipation each year. He has served as the series editor ever since, while also producing collections of his own poetry, essays, and articles and even a well-received book about Frank Sinatra on the occasion of Sinatra’s centenary. Stacey commented that “Even when the chemotherapy had him not able to do much, he kept it up, he didn’t miss a thing.”
“I’m not as impressed,” David confided. In part, for David, his work served as an “evasion of the disease.” He shared, “I didn’t want to dwell on it. I didn’t want to know what was coming next. I preferred to escape and one way of escape is in memory and dream, and another way of escaping is to work.”
Our conversation turned to what Stacey and David think might have caused David’s cancer. Stacey offered that it could be a combination of genetic predisposition and environmental factors. Specifically, David and Stacey lived close to the World Trade Towers when they were struck by terrorists on the 9/11. A risk factor for bladder cancer is an exposure to toxic chemicals and bladder cancer diagnoses are on the rise since 9/11. Stacey’s mother’s doctor had referred to the corridor between New York and New Jersey along the Jersey Turnpike as “cancer alley”.
The Cancer Resource Center has served as an important part of Stacey’s wellbeing and emotional recovery over the last years. She explained that David had major surgery last June, and afterwards, the couple came back to Ithaca. While Stacey had been able to stay strong throughout David’s chemotherapy and surgery, she felt that she “fell apart” upon their return to Ithaca once everything in David’s treatment settled down.
One day while driving around Ithaca, Stacey made an unplanned stop at the CRC and met Fran, the Associate Director of the CRC, who gave Stacey the information and resources that she needed. “There have been a number of times I’ve just stopped in to talk to [Fran],” Stacey said, adding, “knowing that the CRC is there has been incredible to me … I don’t know how I would have found the support I needed if it wasn’t for them.” In particular, Stacey has appreciated that she knew that whatever she said to Fran were things that Fran had heard before, and that Fran knew what the right responses were. When I asked Stacey what some of those things were that she really needed to hear, she relayed that Fran emphasized that it is important for caregivers to take care of themselves. Specifically, Stacey found Fran’s advice regarding staying focused on the reality of the moment to be helpful; for Stacey, this meant allowing herself to feel the emotions that come with being the caregiver to a cancer patient, while also trying to focus on where things are with David’s recovery at present, instead of worrying about the past or future. Stacey has also found the support groups to be a powerful place for her to learn from caregivers and patients who have already been through what she and David are experiencing.
While attending support groups and confiding in Fran have made a world of difference in how Stacey has approached her role as caregiver and taken care of herself, David’s method of coping has been different, but just as meaningful for his wellbeing during his recovery. While he has not visited the CRC, he has pulled upon close networks of friends from every part of his life, from childhood onwards, and these connections have helped to keep his spirits up and take his mind off of the disease. He said with a smile, “I don’t think I could have managed any of this without Stacey. That’s basically the story. She says she did the worrying for the both of us.”
“Yes!” Stacey agreed, “I like to say that the division of labor in our house is that he writes and I worry.” Stacey went to all of David’s appointments and also stayed with him in the hospital during his surgery and whenever he had medical emergencies. Throughout our interview, it became apparent to me that Stacey and David had built a wealth of knowledge about how patient and caregiver can negotiate treatment and recovery challenges, and also how they both individually cope with these events. Stacey recommends that cancer patients have a person or a few people who can stay with them and take notes during doctor’s appointments, as it is often difficult to remember everything that was said during an appointment. In addition, she also recommends having a “go bag” already packed just in case an emergency arises, that way the caregiver and patient have everything they need from a cell phone charger to daily essentials just in case. Stacey and David have also had to learn how to say ‘no’ to social engagements, or end them rather early, in order to aid David’s recuperation. Finally, Stacey advises that caregivers avoid online forums where folks might share their stories because while the intent might be to find more information, Stacey found that it was easy to become panicked or upset and to forget that things were different in David’s case.
For David, having cancer has given him the time to review his life and make sure that his finances and other obligations to his loved ones are in order. “Everything was a surprise,” David shared, “Nothing prepared me, but I wasn’t very interested in the subject. I really didn’t know what to expect. If I had known, I don’t know that it would have made it better or easier.” Later in our conversation, David added, “If you have a disease that could take your life sooner than you thought could happen, even if you are reconciled to the idea of it, [that] you’re mortal, then you will re-evaluate some things. If you survive the experience, you may make some changes. Your time is really valuable … you’ll take time to do things that are more important. If you put more value on something that is not really important in the long run [you’ll change that]. It’s really an experience, although you really wouldn’t want to recommend it to anyone. You take stock and re-visit things from the past, and review the things you did and come to terms with the things you did, and it seems pretty healthy, that part.”
Recovery has led David to watch more Netflix and TV than ever before, and the remainder of our conversation focused on TV shows including Mad Men, House of Cards, Breaking Bad, and Boss, demonstrating Stacey and David’s exceptional taste in TV shows. I had a great time discussing their takes on these shows and learning more about their interests and work. Since last June, David has received positive news from doctors and continues to focus on his recovery and work, and Stacey continues to engage with the CRC. I hope to see them both around Ithaca soon!
Written by Sarah Brewer
Photo credit: B. A. Van Sise