Reflections in a Head Mirror

Cancer must be “fought.” Obituaries refer to a life lost “after a long and valiant battle against cancer.” We rely on the “cancer armamentarium,” and look for more and more “weapons.” The imagery of warfare against this disease is second-nature and, for many people, extremely helpful.

Recently, I encountered writings by a thoughtful and gifted cancer patient who rejects the battle metaphor. Walter Wangerin, writer, professor, theologian, and cancer patient, worries that those who see Cancer as an enemy miss an opportunity. He writes: "Are folks with cancer good fighters if they win? Bad fighters, failing falling foot soldiers, if they lose? Can they be heroic only in triumph? Listen: It never was an issue of defeat or victory … Sickness isn’t an enemy. It’s a rooster’s crow, calling me to the truth of myself and to the precise condition of my relationships …”

Dr. Wangerin, as a patient himself, believes that the warfare imagery constricts the range of the patient’s potential interpretations. “Rather than permitting the interruptions of our lives — like cancer — to enrich our lives, we impose old, familiar patterns of thought upon the experience, diminishing it.” In other writings, he notes how his cancer, in taking away his future, has allowed him to view the present with new clarity. “I don't look forward so much any more, dashing to grasp the future.  I look left and right.  I've the Time, you see, to scrutinize all that is.”

He has become more aware of the present. Last year, when he built a planter in his garden, he had no idea if he would be alive to enjoy the strawberries it would hold. Now, he celebrates the outcome: “I am granted to close a cycle of life, intensely sensitive to the simplicity of its round, unvarnished shape — and to the grace of it. I have not died. My handiwork has become a food.”

I don’t know what to think. Many times, I have resented how Cancer has unfairly and capriciously stolen away a person that I had grown to admire and appreciate. How can I not feel anger? Many days, I feel locked in battle. For the moment, however, I will try to understand this new perspective and see how it might benefit my patients and, possibly, even me.

---

The following is feedback received for this blog:

Amen. This is not something to be taken lightly because you cannot turn from the tragedy that is really there, but there is always both good and bad in a situation. WW is one of the better, more thoughtful Christian writers out there. It does not surprise me his perspective is on target. I just posted something on this track about Resilience on my blog.   -   Rob Lamberts (Note: Dr. Lamberts' blog is listed in the blog roll at right and can be found at: http://distractiblemind.ambulatorycomputing.com/) Excellent post. I've had similar thoughts myself, especially about the "courageous battle" phrase so often seen in obits. I don't know what to think, either; but I've sometimes thought that if I knew I was dying of cancer, I'd write my own obit and say something like "after a pathetic and weak-willed battle..." - Sid Schwab (Note: Dr. Schwab's blog is listed in the blog roll at the right and can be found at: http://www.surgeonsblog.blogspot.com/) I had to fight cancer, twice, but there was no anger in it. Cancer was not my enemy but a learning experience I would rather not have had to go through. I didn't pick up a sword but fought for the strength every day to do what I had to do to outlast the cancers. If it was war, it was a war of will and determination on a daily, even hourly, basis. I am a stronger person because of it and have gone on to perform tasks I never knew I was capable of. Perhaps I never would have tried, before cancer. I went from a person ready to retire quietly 13 years ago to being the head of a non-profit online support group for education and rehabilitation of laryngectomees with a worldwide membership of 2,000, growing daily, 13% of whom are medical professionals. This is run by cancer patients (some under treatment and some clear for years), caregivers, vendors and medical volunteers. I am happy to be associated with them. I had a good life before cancer but I have a better one now. Pat W Sanders President WebWhispers.org

One day about twenty-five years ago, I was the resident on duty in the ENT Clinic at the County Hospital. Toward the end of this one particular day, I picked up a chart and stepped into the exam room.

A nicely dressed, very pleasant older gentleman stood to greet me. He had a neatly trimmed pure white beard and a distinct accent that confirmed that he had lived for decades in one of Milwaukee’s ethnic neighborhoods. I introduced myself and skimmed through his record. The appointment was a follow-up visit after a hearing test.

He leaned forward. “You will have to schpeak up, Doctor! I’m 84 years old and I have great trouble hearing!”

I loudly reviewed the audiogram with him. Indeed, his years of working in one of the city’s large manufacturing plants and his advancing years had taken their toll on his hearing. He had a severe bilateral nerve deafness.

He nodded in understanding. “Vat can I do, Doctor? Can you give me a hearing aid?”

We reviewed the different types of hearing aids and how they would help. He was stunned to learn how much they would cost. He was living on a fixed pension and Medicare would not cover hearing aids. His face fell.

“Too much, Doctor! Too much!”

There might be a way, I thought. I looked at his birth date again and calculated that he would have been in his late teens about the time World War I ended. “Are you a veteran?” I asked.

“Oh, yes!” he replied proudly. “Our unit walked and fought our way half-way across Europe. Oh, the stories I could tell you!”

His military service was, indeed, good news. While the VA insisted on documentation of a hearing loss sustained during active duty for later veterans, World War I vets automatically qualified for hearing aids. It was just a matter of completing the paperwork and he would be home free.

“I’ll help you set up a hearing aid evaluation at the VA in town. It might take a while, but they will get you a pair of aids that should make a world of difference!” I pulled out a pad to prepare instructions for him. It felt like a small victory.

He frowned. “Um, Doctor?” he asked tentatively.

“Yes, Mr. Schmidt?” I continued to write the information he would need when he made his appointment at the VA.

“Doctor?”

I looked up. “What is it?”

“This von’t work, Doctor. I am quite certain that they von’t give me the hearing aids.” 

“Of course, they will, Mr. Schmidt! You served your country! All World War I vets are eligible.”  

“Thank you, Doctor, but I vas on the wrong side during the war.”

I put down my pen. Good point, I thought. Back to square one.  

The cancer surgery to remove part of his tongue, throat, and lower jaw, and the reconstruction took me about seven hours. Little did I realize that he was going to be a lot more challenging outside of the operating room than inside.

His first days after surgery were rocky. His prior drinking issues kept the Internal Medicine team busy finding the balance between alcohol withdrawal and over-sedation. After several days of careful, difficult medical care, he awoke. 

His first comment to me the day he woke up was, “When I go home, I will need plenty of OxyContin.” Hmmm, I thought. Not a good sign.

A few days later, his stepson was admitted to the same hospital floor. My patient got out of bed, walked down the hall, and tried to get his son's friends to give him drugs.

A couple of days later, my patient’s wife announced that she was seeking a divorce. Her lawyer apparently pointed out, however, that the only reason she was able to stay in their home was his disability check, a source of income she would lose if they were no longer married. The relationship was miraculously salvaged.

As discharge approached, the family repeatedly refused to answer the door when the company providing the home health equipment tried to make deliveries. Only after the social worker called the police to investigate did the family finally open the door and accept the supplies.

The next day, one of the family’s friends stood in the hospital hallway and loudly berated the social worker for calling the police.

The morning of discharge, I made the final trip to my patient’s room to wish him well and take care of the final details. “Did you give me my prescription for OxyContin?” Ummm, No.

Follow-up appointments were rarely kept and, on the rare occasions when he did show up, his eyes were glazed and his questions focused on his narcotic prescriptions. My attempts at teaching him about his cancer and its care went unheeded.

__

Clearly, his world was not my world. I admit the entire experience of trying to care for him left me completely frustrated.  He appeared to have neither interest in nor understanding of what we tried to do for him. I shake my head and remember that at one point in my teenage years, I truly wanted to be a veterinarian. At the times when I have had patients like this man, I feel as though my wish had been granted.

What was missing? We had no way to penetrate each other’s worlds. It is an old problem. William Carlos Williams, the talented poet, writer, and family physician who practiced medicine among the poorest immigrants of Patterson, N.J., in the early- and mid-20th century, had many patients with whom he had nothing in common and with whom he could barely communicate. Still, Dr. Williams, crusty as he was, found ways to discover the patients’ secrets that helped him cross the barriers. He took time to meet the families, discern the situations, and learn the stories, all the while sputtering about his patients’ seeming lack of care for themselves or their children. Dr. Williams was able to spot the surprising insight, the fleeting “thing” that underlay the story being played out before his eyes. Those moments of discovery fill his writing. 

We still sputter. It is difficult! I am not proud of my interactions with and my reactions to this man; he was demanding, drug-seeking, and chronically unhappy. He was abusive to people whom I respect and admire.

I am no better or worse than the next person in dealing with the cultural chasms. Experience is a great teacher, however, and I am determined to do better next time. I think I will start by trying harder to understand the story before me.  

---

The following is feedback received for this blog:

What a pleasure to read a blog that is thoughtful and content-full. To hear a respected physician and surgeon question decisions, motivations and meaning enriches all of us. And it reveals the physician to be the caring, insightful person he is. I particularly love the whimsy in "one slight problem." Great story. Keep it up! - Richard Holloway

"It was embarrassing," she declares, partly serious. "I could not believe he was doing it."

He grins. "I couldn't help myself."

Together they tell me the story. Before his cancer treatment, he had been a big man, weighing well over 200 pounds. The radiation for his throat cancer had robbed him of his saliva and his sense of taste and, therefore, he had all but lost any desire to eat. In the early days after the treatment, everything tasted like cardboard. Some things he had loved before — things like tomatoes and pineapple, for example — still burn whenever he tries them. He had all but stopped eating for pleasure and his weight dropped into the 150s. She had been very worried about him.

The seven weeks of radiation had been difficult for both of them and they hoped a few days in Las Vegas would serve as a time of retreat and reward. Indeed, they did relax and he began to feel more like his old self.

One afternoon, they stopped by the buffet at one of the hotels. He half-heartedly picked out a plate of food and headed back to his seat. As he ate, he realized that his taste buds were responding for the first time since treatment. This food is really good!, he thought.  He finished the plate and headed back to the buffet line. She watched him in amazement.

The hotel staff was in the process of shutting down the buffet until dinnertime, but he kept going back. "Don't worry," said one of the waitresses. "Eat all you want." He took her at her word.

Again and again he returned to the buffet table. "They even had crab legs!" he marveled, realizing that he could taste them for the first time since before his cancer diagnosis. What other foods would taste good again? He became an eating machine. Back to the buffet line to find out.

He made several more roundtrips from his table to the buffet. After seven plates of food, he finally declared his eating experience complete. "Don't know where I put it all," he tells me wistfully, remembering the afternoon fondly.

Now, months later, he is at a perfect weight of 165 and estimates that 75 percent of his sense of taste has returned. She no longer worries about his eating and he makes a point of sticking to a healthy diet.

"So," I want to know, "did you eat so many things just to see if you could taste them?"

"I suppose so," he replies, then adds with a grin, "but mostly because I was really hungry. Seven plates of food! Man, was that fun."

She pokes him. "I was so embarrassed," she repeats. Then she smiles.

---

The following is feedback received for this blog:

What a lovely story! I remember my taste buds being off just from Bell's Palsy. I can only image how it must have been for him. - rlbates http://rlbatesmd.blogspot.com/ What a great story! I was wondering what percent of folks lose their ability to taste after radiation therapy to the throat - and what percent get that ability back (and in what time frame)? - Val Jones, MD Dear Val, Loss of sense of taste varies depending on the radiation field and the amount of residual dryness. Traditionally, most patients experienced severe dryness and loss of taste if they had full course radiation for oropharyngeal, hypopharyngeal, and oral cavity cancers. These changes were usually permanent. With the newer radiation techniques, particularly Intensity Modulated Radiation Therapy (IMRT) and TomoTherapy, much of the uninvolved tissue can be spared; therefore, there is less permanent dryness. I don't have any "real" data, but most of my patients treated this way tell me that their sense of taste comes back 70% - 80%. -Bruce Thanks, Bruce! Very interesting - and great news for those who have IMRT. So this is largely about dryness? Hmmm... So perhaps the salivary glands (and not so much the taste buds) are being harmed? I hadn’t thought of that. :) - Val It is a real problem that the patients are worried about dying and longevity when we first meet them. When they are cured, though, often the biggest concerns they have revolve around dryness, taste, and swallowing. A friend at the University of Chicago published a paper on the problem in 2000. I have a short commentary on her work in a local newsletter here. -Bruce I completed treatment for base of tongue cancer in May of 2004. Within 2 months of treatment i was eating bland foods with some satisfaction coming from taste. Now 4 years out I would welcome a complete loss of taste. i am unable to eat a regular diet and depend on Nutren for all of my nutrition. My taste has become so preverted that I dread every feeding. Between feeding I have a taste in my mouth that can not be described. A good comparison might be salty wallpaper glue. In some other post you mention the relationship to saliva production and taste. In my case I have increased saliva production but my taste continues to get worst with time. I have trouble gaining weight or staying hydrated because even water has a terrible taste. I am debating possibly getting my peg back. There may be those that recover from treatment but I am the poster child for all that can go wrong from Chemo/radiation treatment. - William J.

It was a big, dusty cardboard box and it sat along a corridor outside the departmental offices where I did my fellowship. The faculty members in my department were preparing to move to new offices. Boxes, files, and cabinets all sat in haphazard piles waiting to be moved or pitched. Among the items waiting to be sorted was this box, filled to the brim and labeled “SLIDES.” It, too, awaited its fate.

I lifted the flap and peered inside. My eyes widened as I saw a potential treasure trove of old slides, carousels, and movies. The slides had clearly been tossed in the box in no particular order.  Some of the cardboard frames had fragments of old rubber bands stuck to their margins; others had deteriorated, partially releasing the slide film from their frames, but many of the images were still intact. The pictures ran from the mundane to the dramatic: small tumors, large tumors, extensive resections, major reconstructions, preoperative and postoperative pictures.

My curiosity aroused, I picked up a few of the loose slides and spent several minutes holding them up and letting the light from a nearby window shine through them. Some of the slides were labeled, but I did not recognize the handwriting.

“Whose slides are these?” I asked one of the nearby attending surgeons. “Some of these photos are amazing!”

He, too, dipped his hand into the box and shook his head in recognition. “These slides belonged to the former chairman. When he died suddenly a few years ago, someone apparently tossed all of his lectures and presentations into this box. I tried to go through them once, but could not. They aren’t of use to anyone anymore.”

What a thought! As surgeons, we sometimes gather images of patients for their records and for lectures, assemble them carefully, and keep them ready for presentations. Why wouldn’t these photos be of use?

I tried to imagine the process of putting them into some sort of order. I would have to go through the charts, record dates and treatments, sort and catalogue the images, and make some sense of the piles. For several minutes, I considered doing just that.

The one thing I would not have been able to retrieve, though, would be the stories that accompany each set of images. With no story, each picture would have lost some of its ability to reach beyond the screen to preserve and to teach.

Even still, I briefly debated setting the slides aside to consider spending some time with them. Maybe I could have made some sense of a few of them.  

In the end, though, I decided that the stories and the teacher who had gathered the stories had been lost forever. I hesitated, closed the lid, and retreated down the corridor and back to work.

The Medical College of Wisconsin Department of Urology has assembled a team for this year's Briggs and Al's Run and Walk for Children's Hospital, and, incredibly, they are letting me run with them. 

If you would like to donate to support the programs and kids at Children's Hospital of Wisconsin, I would be honored to list some of my blog friends as sponsors. I promise you will get your money's worth ... I am a REALLY slow runner. Click here to go to the donation site.

I promise to post some photos after the run on September 15.

Thanks!

I’m sorry I had to break this to you today.

Thank you.

What for?

You guys gave me ten years. That’s a lot of time.

But we haven’t even started to treat your new cancer!

I know. But no matter what happens, I am grateful for the last ten years.

That’s great, but we just took the cancer out back then. You did all the rest. But … ummm … what are you saying? Do you want us to treat the new cancer?

I suppose so. What choice do I have? I really do not want to go through treatment again, but I will do whatever you recommend. Oh jeez, I hope I don’t have to have more radiation! That was rough.

Actually, radiation might be part of your treatment, although I can tell you that the technology has improved a lot since the last time. They can focus the radiation much more tightly than they could and spare most of the normal tissues.

Yeah, right. Easy for you to say, doc. It’s still gonna be rough, right?

No doubt.

Not surprised. No matter what happens, though, I’m still grateful.

Tell me more.

Before you treated me for my last cancer, I was a mess. I was drinking and smoking and living like there was no tomorrow. I got in trouble all the time. I was crazy. I’m amazed I was still alive. My family had given up on my ever being able to straighten out. I hadn’t seen them in months.

I remember you did have an attitude.

That’s one way of putting it. Yeah, I came to those first couple of appointments drunk. I didn’t know how else to face things.

So, what happened?

I woke up the morning after you guys took out my voice box and realized that I had to change or I was gonna die. It was that simple. Black and white. I realized that I was gonna die.

But you knew that even making those changes didn’t guarantee that everything would turn out fine, right?

I guess I knew that, but, at the time, I realized that I did have some things to live for – my kids, my family, mostly. I was scared.

It worked out?

Well, not completely, but for the most part, it did. Losing my voice box was my wakeup call. Watching my kids grow up and getting to see my grandkids has really given me unbelievable pleasure. I wouldn’t have missed that for the world.

A lot of people do miss that.

And that’s why I can say ‘Thank you’ even though you’re sitting here telling me I have cancer again.

Well, then, I guess you are very welcome.

---

The following is feedback received for this blog:

This is excellent. Thank YOU for sharing this with us. -   Rob Lamberts http://distractiblemind.ambulatorycomputing.com/ Yes, thanks for sharing. I have been thanked many times when I didn't feel I deserved it. I try to be gracious, but often I just feel like I should be saying "I'm so sorry" - rlbates http://rlbatesmd.blogspot.com/