BETTER TO BE THE PATIENT?

My daughter lives in Berkeley and she wasted no time in reacting. Upon learning of my third hospitalization, she boarded a plane and flew to Chicago. Along with my wife, she would remain at my side until we all returned home more than two weeks later.

She and her fiancé are avid runners. So shortly after learning my diagnosis, she found an upcoming charity run/walk in San Francisco in support of pancreatic cancer research. She organized “Team Willis” — after her longtime nickname for me.

To become part of my team, you don’t have to be a runner, walker, or anywhere near San Francisco now or on the date of the event. You don’t even have to leave your chair. Just go to the “Team Willis” page, click “Donate Now,” and become a member of the Team Willis Honor Roll as you contribute to a worthy cause. (You don’t have to click the “Join Team” link, which is more complicated. “Donate Now” will put you on my team.)

Emma’s response is just one small example of the breadth and depth of support that she, other family members, and friends have provided. I’ll have more to say about that later in this installment. But first, let’s return to my narrative.

A Decided Improvement In My Environment

The bad news about my third hospital admission in three weeks is that it would last 18 days. The good news is that I spent the final two weeks on the specially designated cancer floor. At long last, I’d finally reached the point where I was communicating directly with top specialists who would guide my treatment.

There was a team of hospitalists on the scene, too. But they were oncologists who viewed me holistically — as had the senior GI doctor who ordered a CT scan because he sensed a potential problem that standard endoscopy protocol would have caused a less talented physician to overlook. My new team considered every medical issue in the larger context of my cancer diagnosis. And they had no reluctance to answer my questions by having an attending specialist visit my room personally.

There’s no reason to detail all of the many procedures that followed my definitive diagnosis: neuroendocrine pancreatic cancer. It’s the “good” kind of pancreatic cancer for which life expectancy is measured in years, rather than months. It’s treatable with monthly injections, rather than chemotherapy to which such tumors don’t respond. As an integrated unit under the direction of the cancer specialist who embraced his role as captain of my ship, my team also went to work on the more pressing challenge: my internal bleeding.

To Summarize…

So far, my story has focused on my extended and intimate encounter with the medical system generally, including some of its particularly dysfunctional aspects. Some of that dysfunction is the result of a myopic focus that is too common in modern medicine. Specialists may know their specialities, but sometimes they fail to think outside the boxes that they’ve built for themselves.

Another contributor is the tendency of some doctors to treat specific conditions (or, even worse, numbers associated with various laboratory test results), rather than whole patients. There’s a tendency throughout our society to rely on the false comfort of some metric to guide decision-making. Relying on a number is easy, but without the accompanying wisdom and judgment to give it context, the results can be problematic, or even dangerous.

Perhaps the most ubiquitous factors inhibiting the delivery of better patient care are top-down organizations and the dominant influence of senior non-medical administrators (along with federal government and insurance company reimbursement policies). In earlier times, doctors ran most hospitals. Now, hospital CEOs have MBAs, not MDs. But they set the rules, immutable chains of command, and protocols within which doctors and other medical personnel must operate. According to a recent study published in the NY Times, patient care has suffered as a result of the medical professions transformation to this business orientation. Sound familiar to any big law firm attorneys out there?

On the More Personal Side

I haven’t discussed the more personal aspects of my illness. There’s a reason for that. I don’t want emotional, psychological, physical, or other details of my situation to cause readers to think that I view my journey as courageous. It’s not. Nor do I want to provide ammunition to critics who might think that I’m being self-indulgent, seeking sympathy, or pursuing an agenda of self-absorption.

Still, my narrative would be incomplete without mentioning the value of the support that I have received along the way. My wife has remained by my side from the beginning as she quickly abandoned every aspect of what had been her life as a college professor and private tutor at the time of my first hospital admission. Nurses have become accustomed to providing her with sheets, blankets, and a pillow for continuous overnight stays with me. She now knows where they keep all of that bedding and gets it herself.

Likewise, our three adult children have rallied to my side. I live in Chicago; they’re spread far and wide with significant responsibilities of their own. One son lives in Virginia and has three kids for whom he has principal household responsibility while his wife works full-time. He’s also teaching a college course and working as a research assistant as he finishes his Ph.D. in education. Yet he’s made regular plane trips to visit me in the hospital. Another son lives in Los Angeles. He has been both present and on-call for an expedited trip home whenever necessary.

Our daughter has put in the longest stints at my side — literally weeks at a time. Likewise, my sisters, brother, my mother have made themselves available at any hint from my wife or me that they might be helpful. Friends have been ceaseless in offering their concerns, hopes, and prayers for me and my family. Even readers of this blog who don’t know me at all have provided a surprising and welcome source of cheer. I’m grateful to all of you.

One Patient’s Perspective

All of this is, of course, extraordinary and helpful. But let me pause here to offer an observation: I think that an ordeal like mine is easier for the patient than for those closest to him or her.

Perhaps my response is idiosyncratic. But at least for me, it is genuine. My current condition and response to it don’t make me a hero. I’m just someone with a terminal illness that has introduced great uncertainty into his life. After developing confidence in the professionals treating me, I’ve found myself moving toward a sense of calm resignation about whatever the future holds. As doctors present treatment options, I try to make the most informed decisions possible. But I have little control over where all of it will lead.

That is not to say that I’ve become fatalistic, or even pessimistic. Far from it. Throughout my life, I’ve always seen my glass as half-full. That hash’t changed. “Woe is me” is no recipe for coping with situations like mine. Taking things as they come has developed new meaning as a dominant theme of my life.

But for those watching a patient go through tests, procedures, and the rest, achieving that state of mind is more difficult. The newly diagnosed illness has introduced great uncertainty into their lives as well. Adjusting to that unwelcome situation is a challenge. Being supportive to the patient adds another layer of difficulty in meeting it.

Don’t get me wrong. I don’t relish occupying the “patient position” in all of this. No one would or should. But as I view things currently, the emotional toll on those closest to me seems to be greater on them than it is on me.

Anyway, after 18 days, my third hospital admission ended and I went home. Two days later, our daughter returned to Berkeley.

No one knew for sure whether the internal bleeding problem had been resolved. Thrice weekly monitoring of my hemoglobin level at a local hospital would provide some protection against a dramatic blood loss and related crisis that had led to my third hospital admission. No more trips in the local fire department rescue vehicle for me.

The monitoring plan worked. After my first week at home, my hemoglobin level dropped significantly between Friday and the following Monday morning. When my primary care physician called to give me the Monday morning results, she told my wife and me to return to the major medical center emergency room that we’d seen all too often in recent weeks. My fourth admission would soon begin as the search for the source of my internal bleeding continued. As I write this entry, that admission has lasted for 10 days — and I expect to be hospitalized a while longer.

Never Stop Laughing

As I’d begun telling the specialists who were treating me, I was looking forward to the day when I’d be just another cancer patient. To a person, they appreciated my sense of humor. For me, retaining the ability to generate a laugh was still the best way to deal with adversity.

So here’s my advice: retain your sense of humor. If you don’t have one, then work on it. Someday you might really need it.

 

6 thoughts on “BETTER TO BE THE PATIENT?

  1. I know it was unintended, but this last entry has a boatload of priceless wisdom for all of us navigating life’s rocky ride –cancer patient or not! Thank you. –an avid reader of self-help books

  2. Hi Steve,

    I’m enjoying these posts and reading each one as soon as they pop up in my inbox.

    As we’ve discussed, your response is not idiosyncratic. When I was going through my own cancer journey last year, that was something I often observed–that it seemed to be harder emotionally for my family members than it was for me. There’s plenty of reasons this could be so, I’m sure, but I tend to think it has something to do with the definite reality of direct experience vs. the indefinite dread churned out by the imagination. The patient knows first-hand what he is going through. Those supporting him have an idea, but no direct experience of what it is like, and our imaginations fill the void, allowing our worst fears to creep in.

    When I first got news of your CT scan showing the large pancreatic tumor, it was viscerally disturbing. When you fell badly ill and were rushed to the hospital for your 3rd visit, I got a taste of the other side of the equation: trying to support a loved one going through a health crisis from afar. There’s such a desire to help, and such an utter lack of ways to do it. But if I can return some of the concern, love and support that you and your family showed me during my ordeal last year, I know that will be more than enough.

    Love, your nephew,

    Joel

  3. Hi Steve
    While we never met you’ve felt like a kindred spirit. I like you have a ton of family and acquired many friends along the way.
    My three remaining daughters have been by my side since my Stage IV Colon Cancer Diagnosis. All point to months, not years, but I’m good with that. It is, however, really affecting my girls.
    It is difficult watching their angst and uncertainty relating to our futures. I have defused all that with my goofy sense of humor, which seems to reduce their angst.
    I’m getting a ton of Chemo and, so far, I’ve had few side effects. Win, loose, or draw, I say Fuck Cancer. I’ve survived much worse.
    When you get a chance, this 57 min c-span video will be well worth your time.
    http://www.c-span.org/video/?324741-4/book-discussion-accidental-universe
    Stay positive and stay engaged!
    Jim

  4. Steve — When you took Diplo with Leopold, where in the circle did you sit? When I did (1968-69), I was four people to his left. The seats weren’t assigned, of course, but we all found our way to the same places every MWF @ 8:00. Hang in there. JWR

  5. Steve – At 46 with “success” in career and money and such but life chaotic and I search of what’s important, your journey is a full frontal cautionary one for me, disturbing me greatly, but in a good way. Thank you.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s