Posts Tagged ‘prostate cancer’

How Others Responded, Part 1

June 9, 2012

Terminal illness and death are topics that elicit interesting responses from people. I found that many people simply didn’t know what to say when they heard the news that my husband had metastasized prostate cancer. Others seemed to assume that my experience would fit some model based on what they had read or experienced themselves. A few made no assumptions and were just there for me.

One close friend had lost her husband to cancer many years earlier. When I first told her the news of Howard’s illness, she seemed to assume that things would become dire quickly. That had been her experience and she assumed it would be mine. Every time I saw her, she asked, “How is Howard?” in that voice that radiates the expectation of bad news. When month followed month and he was still alive, still on his feet and carrying on with everyday life, she seemed confused for a time, then settled into a kind of watchful waiting.

I love this friend and she proved to be one of the strongest, kindest supporters I had during Howard’s illness. But her early responses to his illness, while quite human and understandable, were more focused on expectations based on her own experience than curiosity about mine. What I needed was for her to serve as witness to what was actually happening in my life. She eventually stepped into that role, and in doing so, gave me an invaluable gift.

Early on, I found I had no desire to tell most people about the drama unfolding in my life. Howard didn’t want his identity to be prescribed by the cancer and I didn’t want mine to be fixed by my role as “wife of a man slowly dying of cancer.” Once, while with a group of Boulder Media Women colleagues at a potluck, the conversation among a small clutch of us turned to residential writing retreats. I wistfully admitted I would love to apply for one of the programs that offered room and board for a month in a quiet mountain setting. When one of the women encouraged me and I said it wasn’t an option at the moment because my husband was ill, she replied, “Maybe he’ll be better by the time the retreat is set to start.” I didn’t respond. I couldn’t without admitting that I didn’t believe he would be getting better. That would have been the equivalent of a sharp left-hand turn in the conversation, and the road we would have been traveling was not one I wanted to take them down in that moment.

I did go down that road with people, but some joined me on the ride sooner and others later. “I can’t imagine what this is like for you,” some admitted upon hearing the news. I told them it was like having a slight fever . . . all the time. You adapted. It became your new definition of “normal.” But there was no denying that it sucked a bit of the life out of you, was impossible to ignore, and changed your focus.

As the months wore on and Howard became more fragile, I became more open about his condition. And it never ceased to amaze me that many people responded by immediately lapsing into their own experience with the illness and death of a loved one. Sometimes the loved one was a spouse, but more often a parent or friend. Occasionally it was a pet. It was as if their own undigested emotions over their loss surfaced as soon as I mentioned Howard’s illness and their need to process their experience took over. No doubt, some of them just wanted to show that they could have empathy for my situation, but often their own story supplanted the story unfolding for me in the moment. And there is a need, for those in the midst of terminal illness—their own or that of a loved one—to be able to include the fact of it in conversation without finding that the conversation has jumped from their own present to someone else’s past.

By far the worst of those experiences were the stories of grief at the loss of a pet. While I’m no stranger to the depth of love for and grief over the loss of a beloved pet, it is fundamentally insensitive to draw a line between the terminal illness of one’s spouse to the illness and eventual death of a pet. It made me wince internally and because my internal states are often transparent to even the most casual observer, I’ve no doubt that wince was visually perceptible.

Many people seemed surprised that I was “handling it so well.” Some of them bluntly stated that they believed I was feigning strength and bravely playing at stoicism. Others looked at me with curiosity, searching my eyes for signs that I actually loved my husband because they couldn’t quite grasp the idea of living with what is and just savoring what little time you actually have with a loved one who is dying. More than a few shook their heads and said they didn’t know how I was keeping it together, as if expecting me to come unhinged and fly apart at any moment—a little unsure of whether they feared I would do so or be disappointed if I didn’t. A few wanted to cast me as some enlightened human, a model for taking life on the chin with equanimity. In truth, of course, I was just another pilgrim going down the road.

The response I found truly helpful mostly came from an inner circle of very close friends who were willing to walk with me on my road for a little while, shoulder to shoulder, as fellow pilgrims. They could be with me without looking for signs of structural fracture. They were empathic without being cloying. They asked how Howard was doing and really did want to know the answer, whatever it was. They didn’t tiptoe around me, but cut me exactly as much slack as they always had, no more and no less. They stayed present with me when I needed to talk—didn’t flee mentally, didn’t try to change the subject, didn’t doubt my self-appraisal . . . but did energetically hold me in a loving embrace.

It was that response that helped carry me through.

Copyright 2012 by Melanie Mulhall

Worst Fears

September 26, 2011

What we fear most sometimes ambushes us when we are otherwise preoccupied with challenges we believe are, in themselves, about as much as we can take. My husband had a brilliant (if sometimes perplexing) mind. He was a wordsmith and the keeper, in our household, of obscure words and interesting etymology. He was a deep thinker, though he occasionally proclaimed that if personal depth could be compared to the depth of a pond, his would be revealed as being only ankle deep. I felt it would be measured in fathoms, not inches.

The decline he experienced the summer and early fall of 2010 was mostly a physical decline, not a mental one. He could handle the physical decline, even if he did not like it. His worst fear—and mine for him—wasn’t physical decline, but losing his mind during the downward spiral.

The threat of that ambushed us in mid-October. One of his closest friends, Andy Wilkinson, was visiting from Texas. I had urged Andy to visit because I feared that Howard might die before they had a chance to see one another again and something in my sense of urgency had gotten through to him.

Neither Howard nor I thought much about the MRI scheduled during Andy’s visit. There had been so many scans and tests over the previous three years that I no longer gave them much mental or emotional air time because they almost never revealed anything important or even useful. But the MRI had been scheduled because Howard had reported some rather puzzling symptoms during a checkup. He’d been having a certain numbness on one side of his face that seemed to be present when he was prone and went away once he was out of bed and moving around a bit. He hadn’t been quick to tell me about it and when he had, he hadn’t seemed overly concerned. The fact that he had actually informed me of the symptom should have told me more than his seeming lack of concern about it. But my antennae must have been slightly misaligned that day.

I’d chalked it up to his overall lack of mobility. The blood just wasn’t having a chance to circulate like it should. I had little fear of stroke because it didn’t fit the kind of numbness connected with stroke. He and I had both noticed that words were occasionally failing him, too, but that didn’t alarm me, either. It wasn’t severe and I thought it to be symptomatic of his overall decline.

The MRI was just a minor interruption to an otherwise lovely visit by Andy. In fact, Andy went with him to the appointment.

His doctor called the house before they returned. The cancer had metastasized to the dura—the covering of the brain. There were also a half dozen nodules between the dura and brain, one of them large enough to be putting some pressure on the brain. That was probably what was causing his symptoms.

This was the first time in fifteen years his oncologist had seen this kind of metastasis in one of his prostate cancer patients. The online research I did later suggested that cancer metastasizes to the brain in 1-2% of prostate cancer patients and that this percentage might actually be inaccurately low based on the autopsy results of some men who had died of prostate cancer. It would seem that the cancer might be finding its way to the brains of these men more often than assumed, but when it did, they often died before it was discovered.

As his doctor talked, it seemed to me that the fear I’d never allowed handhold, foothold, or any purchase at all in my mind was standing in front of me and making faces, instead of just climbing around in my head. If the cancer continued to spread in this area, any number of alarming and deadly things could happen, depending on the part of the brain impacted. He could have seizures. His ability to swallow, breathe, see—in other words, his ability to perform one or more bodily functions necessary to live—might be impaired. He could lose his ability to speak . . . or even think. The possibilities were ugly.

I was in tears when he and Andy got home. One look at me, before I said a word, told Howard that something was very wrong. I don’t think he immediately connected it to the MRI because, like me, he hadn’t expected the MRI to tell us much. Andy was an innocent caught in a drama he hadn’t auditioned for. Fortunately, Andy was as good a friend and as strong a man as I had always believed him to be. But he’d come to our home without having seen, first hand, Howard’s decline over the past few months and was now finding himself in something of a B-grade horror movie.

I think Howard’s doctor had been in shock, too. He didn’t hold out much hope for doing anything about this newest development during my initial conversation with him. But by the time we saw him, less than two days later, he had a plan. We could do nothing about this newest development. Or . . . Howard could undergo a round of radiation treatments, not to effect any “cure,” but to mitigate some of the potential consequences of the metastasis. In other words, if we were lucky, Howard might continue his pilgrimage toward death and ultimately die without losing his senses or his mind.

Neither of us was keen to have him undergo radiation treatments, but we were both relieved by the sliver of hope that having them might allow him to maintain some of that keen mental prowess so important to him.

I found myself supporting the idea. Howard had chosen an allopathic, conventional approach to the treatment of his cancer. It was not an approach I liked. It was an approach I doubted I would take if I were diagnosed with cancer. Yet, here I was—the woman who mostly disdained the entire approach to medical “care” in the Western world—not only supporting radiation treatment, but feeling grateful that it was an option.

As for Howard, he never wavered from his stance that Death was going to have to do more than show up and invite him to depart, it was going to have to wrestle him—like the angel who wrestled Jacob through the long night. The poet Rainer Maria Rilke once wrote that it is not winning that tempts the man who would wrestle with such an angel. On the contrary, the man who would undertake a match like this would have the wisdom to know that being defeated by such a powerful being would make him more than he had been before the match.

Perhaps, but Howard wasn’t quite yet ready to surrender in this way. He wanted to hold on to any shred of his physical presence that he could . . . and as much of his mind as could be bargained for in the delicate negotiations between Death, allopathy, and his own considerable will.

Copyright 2011 by Melanie Mulhall

Choices

May 30, 2011

My husband’s faith in allopathic medicine was approximately as robust as my disdain of it. I’d had a handful of horrific experiences with doctors and I’d had good experiences with alternative practices. Coupled with my shamanic worldview, that made a holistic way of looking at well-being natural for me.

I had long been passionate about wellness, favoring it over going to seed, becoming ill, and needing remedial measures. Maintaining wellness was, in my mind, necessary for the full contact living I preferred. That meant getting enough sleep, eating well, meditating, working out regularly, and otherwise doing whatever it took to give me abundant energy, vigor, and a strong immune system so I could take on everything life had to offer.

Wellness practices were, at best, an afterthought for Howard. He ate well to the extent that he was eating what I cooked for him and, fortunately, he loved my cooking. But left to his own devices . . . well, if good nutrition was in the mix, it was only there by accident.

We had very different ways of looking at wellness. I was proactive and enthusiastic about it. He was reactive and laid-back. A brilliant thinker, he just brought his body along for the ride. And I was willing to go along for the ride because I loved him.

He stayed in his head and out of his body and it never seemed to occur to him that the prostate cancer might return and metastasize. When he was first diagnosed with prostate cancer in 1992, he had placed his faith in the urologist. It was his body and his choice. When the prostate cancer returned and metastasized, he again put his faith in what doctors had to say. Again, it was his choice. My job was to support his choices.

More than once during his illness, friends and acquaintances asked whether I was employing energy medicine techniques with him. The assumption always seemed to be that I would pull some tools out of my bag and work on him—with or without his knowledge. It was a poor assumption. I had been impeccable about receiving permission before doing any kind of energy work on anyone and was not about to change my approach with him. But I never actually sought permission because I was told by guidance during meditation to stay out it. And it was given to me as bluntly as that. Stay out of it. I could give him my support and I could direct the energy of love towards him. That was it. No energy healing techniques. No pressing him to try alternative healing modalities. Support and love. Period. I chose to accept that guidance.

It must be said that I can be opinionated and downright pushy on important matters. Most of my controlling behavior had always been directed at myself, but that didn’t mean I couldn’t be forceful in fiddling with the lives of those I loved. In this instance, though, I was strangely at peace with the admonition to stay out of it. I sensed that this was an unfolding of events agreed to before we’d ever met, before we’d even entered our human bodies. I didn’t like the diagnosis but I somehow knew that this was Howard’s heroic journey, and while I was lucky enough to be his companion along the way, he was the one choosing the path and he was the one choosing whenever there was a fork in the road.

So Howard began treatment. His doctors threw hormone therapy and chemotherapy at the cancer. They checked his PSA on a regular basis and periodically did bone scans, CT scans, and other tests to see what was happening with the disease. For years, bone scans had shown nothing, despite troubling PSA seven or eight years following his prostatectomy. He’d been put on hormone therapy to address those concerns.

When cancer did show up in the bones, it was in his spine, ribs, arms, legs, and skull—typical for metastasized prostate cancer, as I eventually came to understand from my research, but alarming when nothing has shown up in scans until cancer shows up everywhere in the bones.

That bone scan was the only one that ever definitively showed cancer in the bones. The doctors had trouble finding anything in scans from that point on. But when prostate cancer metastasizes to the bones, it forms osteoblasts, which essentially harden the bone. That seemed to make it more difficult to see in a scan. The PSA was, for a long time, the one test that gave some indication of whether the treatment de jour was working. And when one treatment failed to lower the PSA from bouncing-off-the-wall-alarming to just alarming or stopped impacting it much at all, another chemical cocktail was introduced.

Between early 2007 and late 2010, Howard burned through every kind of treatment his doctors at the urology center could throw at the cancer. And then he was referred to an oncologist at a cancer treatment center. They threw more drugs at the cancer, ultimately gaining Howard’s agreement to try experimental drugs.

Through all of this, he maintained good humor. Through most of it, he seemed to believe that allopathic medicine would hold the cancer at bay. I wasn’t so sure. I did a fair amount of research online. Nothing suggested that any treatment was curative. At best, the cancer could be held at bay a little longer. But the word palliative was used over and over. The treatment of metastatic prostate cancer was, essentially, palliative in nature and nothing from Lupron to Casodex to docetaxel to Zometa was going to save him. He chose to believe—until the last weeks of his life—that he was going to beat the cancer and eventually die of something else.

I chose not to tell him what I’d learned in my research.

Copyright 2011 by Melanie Mulhall