Fearing death can mean that our lives are lived to defer death rather than to live.
When doctors told 90-year-old Norma that she had a large, cancerous mass on her uterus just two days after her husband of 67 years had died, she decided she could either be down in the dumps or take the high road and choose happiness and adventure — and hit the road is just what she did.
Instead of choosing one of the cancer-battling options doctors proposed, like surgery, radiation and chemotherapy, Norma told them, “I’m 90 years old. I’m hitting the road.”So Norma, her son, her daughter-in-law and the couple’s poodle, Ringo, embarked on an RV trip across the U.S.
Her doctor was supportive of the decision.”As doctors we see what cancer treatment looks like every day,” the doctor told Norma’s family. “ICU, nursing homes, awful side effects and honestly, there is no guarantee she will survive the initial surgery to remove the mass. You are doing exactly what I would want to do in this situation.”
You can follow her exploits on her Facebook page, Driving Miss Norma
This CNN article reviews the consequences of the “do everything you can” medical directive for someone who is unable to make decisions for themselves.
Key ideas from the article:
“We can sustain a pumping heart and fill lungs with air indefinitely. Kidney function can now be replaced by humming dialysis carts and stomachs fed through surgically implanted tubes. In the intensive care unit, this process is carried on with extreme monotony, indifferent to whether the patient is actually able to think, feel, or protest. There comes a time for every person when his or her identity is gone, and the quality of life should be valued more than the mere presence of it.”
“Studies show there is a dichotomy between how health care workers view end-of-life care and how the rest of the world does. To illustrate this, a recent report published in the Journal of the American Medical Association (JAMA) describes data that was obtained from death records from Massachusetts, Michigan, Utah and Vermont from 2004 to 2011.
“It revealed that compared with the general population, doctors were less likely to die in a hospital, less likely to undergo surgery at the end of their lives, and less likely to be admitted to an intensive care unit. Similarly, a study published in Plos One by doctors at Stanford University in 2014 found 88.3% of 1,081 physicians surveyed for the study designated “do not resuscitate” as their advanced directive.”
“It is a painful truth that doctors are often asked to continue the kind of intensive measures they would never wish for themselves or a loved one. For those in the health care community, death is not an abstraction, but a daily reality. We know how precious life is, and we understand how difficult it is to watch family members lose people they love. But we also know in modern medicine, dying with dignity is a luxury more people should enjoy.”
This is the current draft of the Acknowledgements page of Dying With My Mom.
It is impossible to become who you are without other people. My path included some influential teachers in middle and high school.
Robert Woodland was my freshman Advanced Placement composition teacher and his quiet mentoring in writing helped me recognize my latent talent. I learned the importance of patience, flow and rhythm from our times of cross country skiing and later learned the value of patience, flow and rhythm when writing.
One of his assignments was for our class to write an original poem and to find a poem written by someone else that we liked. The poem I wrote was about how amazing it is that an airplane can fly and the poem I selected was the lyrics to Rush’s Tom Sawyer. Woodland gave me a good grade but more importantly, commented, “You are very apparent in this assignment.” He gave me one of my first glimpses into what made me unique.
Chuck Spencer was a physically imposing man and I, along with my classmates, feared him. His command of literature and writing, as well as his standards for students, were at once intimidating and inspirational. I vividly remember the day I walked to my desk to see that I had earned my first A from him on a paper about Thomas Wolf’s Look Homeward, Angel. Earning an A from him was one of my most important high school accomplishments because he didn’t give them out often. He challenged us with great authors — Wolfe, Steinbeck and Faulkner were my favorites — and I gained an appreciation for well-written stories.
Mike Delp was an opinionated and grumpy influence on my life. Delp didn’t care much what people thought of him. He had strong beliefs and was not swayed by lazy arguments. I was drawn to his self-assurance, his lack of need for approval from others, and his strangely humble way of teaching. The most important lesson I learned from Delp was to live and think for myself, which I have done, in a not insignificant part because he taught me that I don’t have to be a part of the herd. The second most important lesson I learned from him is that it doesn’t matter at all how hard one works. What matters is the quality of the final product. He never accepted “I worked hard on this paper,” as a substitute for quality. His demand for quality was a critical force in shaping my thinking skills and writing voice.
I have always sucked at the mechanics of math calculations, even though the concepts of math interest me. In sixth grade, my math skills plunged to such a level that I was placed in a remedial class taught by Bill Bedford. During the second week of his class , Mr. Bedford told me to stay when the bell rang for the next period. Assuming that I was in trouble yet again, my classmates taunted me and I dreaded yet another conversation with an adult who was not happy with my behavior.
Mr. Bedford told me that I didn’t belong in his class. He was certain that I could master the material and his goal was for me to quickly complete the remedial content so that I could move to a normal math class. He sacrificed the benefit he would gain from his student aide by assigning her to help me through the material. She became one of my best friends and we walked together when we graduated. I wish I could say that Mr. Bedford’s sacrifice resulted in arousing the epic math skills dormant within but alas, I still suck at math.
There were other teachers who helped me navigate the difficulties of my childhood. They were able to see through my disruptive behavior and challenged me less in academics and more in the development of humor, articulating my ideas and working to my potential.
Eva Strempeck was my middle school music teacher. Though I frequently interrupted her class with jokes and silly antics, Mrs. Strempeck loved my sense of humor and helped develop it. She entrusted me with her husband’s Firesign Theater albums, which I thought were hilarious. While other teachers were exasperated by my disruptive behavior, she saw through the disruptions and encouraged me to develop my humor. It is hard to overstate her influence on my life.
What little Spanish I know I learned from my Nancy Lemmon. Her primary influence on me, though, was to practically force me to be on the high school forensics team. I wrote an essay in Delp’s class that was a serious yet sardonic take on the Bill of Rights and it became the basis of my speech. My first season of competition was in 1983, when I won first place in the Original Oratory category in district competition. I competed in regionals and placed fourth.
These teachers could have treated me like just another annoying, disruptive kid but each of them built something inside of me that I still carry today: a sense of humor, a love for ideas, confidence to believe and say what I want, discipline to shape words into the right message, and a desire to excel not by besting others but by besting myself. I am deeply grateful for their influence on my life.
Every cancer has its own molecular profile. There are many different sub-types just in lung cancer. They all hijack the immune system, tricking your body into believe they are not there. If we can teach your immune system to outsmart cancer by realizing that these cells in your body need to be killed, and if we can mobilize our immune system, then we have a completely new shot at treating cancer. The flip side of this hypothesis is, why would you give yourself chemotherapy at the highest doses, which wipes out the immune system? That’s what we’ve been doing for 40 years. I’m not saying you shouldn’t give yourself chemotherapy at all—but why would you give yourself such a high dose that you actually wipe out whatever protective mechanisms that you already have?
Source: How to Cure Cancer
Mom and I enjoyed our daily conversations and we became very close friends after my first trip to Michigan. For the first time in our lives, we enjoyed spending time together. We no longer repeated the pattern of fighting in order to keep a safe distance from each other. We had little time left and we spent it on enjoying each other. We had a few disagreements but we focused on what mattered rather than what didn’t.
The most important parts of my days were when we talked in the morning and in the evening during my commutes to and from work. We talked about memories from the past, what we had been learning, my work, her experiences with declining health, some robust political and philosophical discussions, and many conversations about God and faith.
Our relationship had deepened and I genuinely enjoyed knowing her. I had never bothered to notice that she possessed a keen insight into life, was delightful, witty, and had a great sense of humor. I had not looked for these parts of her because I always saw her as the negligent, abusive, unmotivated mom. Every time I discovered something new about her, I became more enamored with her. She had become a treasure I never knew I had.
My discovery that my mom was an amazing, wonderful woman had a downside though: I felt an increasing level of anger.
I wondered, “Why am I so angry? Everything is going great.”
Gradually, I realized that I felt ripped off.
Sure, we had wonderful times together after we reconciled but part of me resented that I had to experience 46 years of snarky mom and only had a few months of awesome mom. Why couldn’t we have had this kind of relationship sooner? Why did it take cancer for us to focus on what mattered about each other? How unfair was it that cancer brought us together and cancer would soon separate us? For the better part of forty years, we were at odds. For just a few months, we were best friends. And cancer would inevitably bring that friendship to an end.
Friends often asked me how my mom was doing and based on whatever the current news was, asked how I was handling it. I described the anger I felt about having a snarky mom instead of a friendly mom and a few friends said that I was lucky. Like me, they experienced distance in their relationships with their parents. In several cases, one or both had died before the relationships could be repaired.
Several of my friends knew that my dad had mostly been absent from my life and that he and I had resolved the past to the point where I was with him when he died and assured him that I no longer felt resentment toward him.
I heard variations of the same message: “I’d love to have with my parents what you have with yours. We can’t talk to each other without fighting. You’re really lucky to have this time with your mom.”
I didn’t consistently feel lucky, though. I felt gyped. After hearing some friends say I should feel lucky, I felt like I was being greedy by wanting to have had more closeness with my mom and dad. Feeling greedy led to feeling selfish and guilty.
I tried talking myself into a sense of gratitude but I didn’t feel thankful that I had an absent dad and a snarky mom. I was happy to have worked things out with both of them before they died but I couldn’t get past resentment for having crappy parents.
Mom and I talked about this. She regretted the lost time as well but her focus was on enjoying as much of her remaining life as possible. Every time we talked, she told me what was new to her about the things she had seen so many times before. She saw how the sun shone differently through the tall pine trees in her yard. She enjoyed how her cats, Ollie and Teddy, hunted and played in the grass. She sat on the porch and listened to the breeze. She had friends over and laughed about forgotten stories. Her intent each day was to separate herself from her suffering and enjoy what life presented to her. She had no time for regret.
Maybe because I thought I had the luxury of time or maybe because I’m a slow learner, but I couldn’t get a quick handle on my resentment. It didn’t matter what my friends did or did not have with their parents. Their perspectives were instructive but the fact that I had what they didn’t made little difference in my ability to accept 46 difficult years.
One of the best decisions I made was to be open about this with mom. She too had wished we could have worked things out sooner but, it was her knowledge that her time was short that persuaded her to spend her energy and time on thankfulness and goodness instead of rehearsing all the coulda-woulda-shoulda scenarios that, if she had just acted differently, things might have been better.
We constantly deny our inevitable death. Part of that denial is the belief that the horizon of death is far beyond our view and that time is abundant. It’s entirely different when you know for certain that your time is short. I read once that denial makes us think that we have a lot of time left but when a person becomes progressively in touch with their mortality, they think of their death every day. Not in an obsessive, fearful manner but in a way that leads them to recognize that death can come on any day in any form. Living with death as a potential part of one’s immediate horizon is what allows one to more easily set aside hard feelings and focus instead on what is good.
Isn’t that strange? You might think that you see things more clearly when you perceive that lots of time remains. It may be instead that you see life more clearly when you are pointedly aware that time is much shorter than you would like it would be.
Bacon and other processed meats can cause cancer, experts say – link to npr.org article
I’m weary of the studies like this one that tell us Behavior Y causes increased risk for Disease K and our lives will be cut short if we indulge the behavior.
It’s all fear-mongering click bait.
Here are some things to consider:
- Everyone will die of something. Specifically, you will die of something.
- Health is merely the slowest possible rate at which you die.
- Life is random. Whether you get Disease K is an unpredictable function of behavior, genetics and probability.
- How you will die is a total crap shoot.
- Many things that are bad for people are also enjoyable.
Some surveys of Americans show that people are more afraid of suffering before they die than they are of actually dying. We are afraid because of the saturation of click-bait, fear-based articles, advertisements, videos and television programs that we habitually consume every day. We read the studies with a kind of narcissistic voyeurism that leads us into fearful imaginations about how horrible it would be to have Disease K and please-dear-God-don’t-let me-get-Disease-K.
One important approach to enjoying life is to accept that you will die. I read a while ago that when someone has accepted the inevitability of death, they think of dying every day. Not with fearful obsession but with a recognition that it could happen at any time. That recognition tends to cause them to live life differently than when they compulsively push death away from their awareness.
When you accept the fact that you will die, you can look at bacon or cigarettes or bourbon or suntans or KFC or 2-liter bottles of soda or two glasses of wine four nights a week and think, “I dunno man. I might be healthy if I stop Behavior Y or might die of something completely unrelated to bacon, cigs or booze.”
What good does it do to live in fear of all the different, random causes of death and to shun all the experiences that are supposedly unhealthy when we are all going to die anyway?
When I learned my mom, a 50 year smoker, had lung cancer, I told my friends who smoked (and a few strangers) to stop because they were going to die from it. That impulse to share the obvious dangers of smoking came from the shock of knowing I would soon lose my mom to cancer and I didn’t want people to face the same fate.
As if my words could suddenly change their minds.
As mom moved closer toward death, I watched her gradually accept it. The imminence of death liberated her. She became courageous. Many of her friends told me, “Your mom was the most courageous person I’ve ever known.”
My mom was brave because she accepted her mortality. It freed her to welcome people deep into her life. This was something she had been afraid to do before her diagnosis because she, like you and me, had been hurt deeply in the past.
She accepted that she would die. What was left for her to fear from other people? For this reason, she opened herself up to her friends and family.
Some time after she died, I no longer told people to stop smoking because I thought, “What does it matter? We will all die of something.” Everyone already knows that some of what they do, the foods they eat and what they drink are unhealthy. No one needs to be told these things.
I fear the process of dying. There are times when I imagine being close to death and I feel pissed off that death always wins. I worry about suffering and feeling pain. I worry about feeling terror and the reality that when I die, I have to die by myself, even if people I love are around me. Because of my mom though, I am gradually learning how to die. I’m almost 50 and death is closer to me now than it was when I was 30. I don’t want to die and I don’t want death to win but that’s not how it will play out.
So here is what I have come to conclude (but don’t yet practice well):
Eat, drink and be merry for tomorrow we die.
Shun asceticism and the excesses of healthy living.
Pursue moderated hedonism – do what pleases you and others.
Risk to open yourself up to love the people in your life.
So I commend enjoyment because there is nothing better for man under the sun than to eat, drink and enjoy himself, for this will accompany him in his labor during the days of his life that God gives him under the sun.
I’ve always thought of my uncle as a man’s man. He was a hard worker, principled, loved hunting and shooting, and had a jovial sense of humor. Some of my favorite memories of my childhood involve shooting guns with him.
When Tanya and I were dating, we went to Grayling to visit mom and I asked Lewie if we would be interested in shooting while we were there. I brought my Ruger 9mm and Browning Buckmark .22 and Lewie brought several of his guns, including his 1911 .45.
I plinked a bit with my .22 before switching over to the 9mm while Tanya shot the Buckmark. My uncle offered the .45 to me to shoot and I agreed. The 1911 is a lot of gun for someone who doesn’t shoot very often but it was fun to make some noise. He then asked Tanya if she would like to shoot it.
With no hesitance, Tanya squeezed off several rounds. My uncle smiled, nodded his head toward Tanya and said, “She’s a keeper.”
Mom and Lewie had a difficult relationship at various times throughout their lives. Fault can be laid on both sides at different times in their history. By the time mom was sick, they hadn’t communicated for many years. She and I had daily conversations and occasionally, her relationship with her brother was a subject of the calls.
I encouraged her to contact him to let him know that she was dying but she wouldn’t do it. She was scared of him and didn’t want the drama of an overt conflict. It was safer to have distance than to contact him and let him know of her cancer.
Mom made so many positive decisions that were focused on dying well that I couldn’t take issue with her position even though I disagreed with it. I wanted her to have an opportunity to reconcile with him but she was blocked from willingness by a lot of fear about being with him at the end of her life.
Two days before she died, I pressed mom a bit more insistently to let me make contact with her brother for her.
“No. He hates me and if he came over he might hurt me.”
“I don’t know if he hates you or not, mom. He might be very angry with you but it’s hard for me to imagine he is so angry with you that he wouldn’t come see you.”
“I’m tired, David. I need to get some sleep.”
“Okay, but I’m going to ask you about this tomorrow.”
She was dismissive but I could tell the idea was gaining traction. Her issue wasn’t with a lack of desire to see him and to have some kind of forgiveness. It was fear of what his reaction would be.
The first thing the next morning, she said, “Okay, give me a few reasons why I should meet with him.”
I explained to her that if she died without giving him an opportunity to meet, he would lose the chance to make things right before she died. She had little to lose because she would be dead but he would have no choice but to live with permanent silence between them.
“Okay, that’s one,” she said.
“You would lose the opportunity to pass into whatever comes next with a clear conscience.”
There was silence and I felt an implied prompt to come up with reason number three.
“You might actually work things out.”
“What if he hurts me?”
“Why do you think he might hurt you?”
“Because of that night in the winter when he sat in his truck.”
She had told me this story before. Grayling is a small town nestled in what is essentially a large forest. Especially during winter nights, her house can be an eerie place. It is located at the end of a dirt road that branches off a blacktop road. It’s a fairly isolated location and if there was any kind of violence, help would be at least 20 minutes away.
She said my uncle parked at the edge of her driveway with his headlights on and engine running. He didn’t come to the house but sat there for quite a while. She believed his motive was to intimidate her. Eventually, he turned around and drove off.
“Mom, what if it was something completely different from that? What if the reason why he sat there was because he was conflicted? What if he longed to see you and talk with you but was also very angry with you? What if he couldn’t decide what to do? What if he was torn between love and anger?”
She sat quietly for quite a while.
“I think he’ll hurt me.”
“Mom, here’s the deal. He’s in his 70’s. I’m pretty sure that if he threatened violence toward you, I could keep him from attacking you. And if that doesn’t work, I’ll try reason. I’ll say, ‘Lewie, you don’t need to kill her. If you just wait two days, she’ll be dead and you won’t have to go to prison.’”
She laughed and got quiet for a few moments.
“You can call him.”
Again, I was amazed by her courage as she faced her death. She had so much angst and anxiety in relation to her brother and yet I could tell it was deeply important to her that she see him before she died.
I called her brother to tell him of the situation.
“Hi Lewie, this is Dave Reynolds. How are you?”
“Hi David, I’m good. How are you?”
“Well, I’m okay but I’m calling you to tell you that my mom has lung cancer and will die within the next few days. She would really like to see you before she dies. Would you be willing to come visit her?”
It took a few moments for him to process what he had heard.
“I will come to see her.”
“She knows you’re mad at her and she’s worried you’ll hurt her.”
“There won’t be any trouble,” he said.
We agreed to a time that evening and hung up.
Mom heard the conversation but she didn’t quite believe it.
“So, he is coming over tonight?”
I confirmed the plan with her and assured her that he didn’t sound angry and that he promised there would be no trouble.
I think mom felt relief that one way or another, their relationship would have some kind of resolution before she died. Through the rest of the day, I tried to gauge how she was processing her reactions. She still had anxiety but there was also a loss of heaviness in her attitude. Their relationship would no longer be based on doubt, fear and shame but on whatever they managed to work out together.
I looked forward to seeing my uncle. Though I hadn’t seen him for many years, I still had a lot of affection for him.
He and his wife Kay arrived on time. He had aged well and looked not much different from when I last saw him. I was happy to see him and even in his 70’s, he was still a solidly-built, robust man. I was dreaming to think I could have stopped him if he decided to attack mom as she feared. My uncle could have easily kicked my ass.
Mom was wrapped in a blanket in her favorite chair. The sound of her oxygen machine made its assuring pumping and hissing sounds. I sat on the couch with Kay as Lewie drew a chair close to mom. I wanted to hear what they were saying, but this was a conversation between a brother and sister. It wasn’t at all important if I heard any of it. All that mattered was that they talked.
He sat with his body oriented intently toward her. There was no defensive body language from either of them and the tone of their conversation was easy and conciliatory. I admit that I was a little disappointed when I heard a few snippets of their conversation. Throughout the day, I had played a fantasy in my mind where each of them explicitly acknowledged their own part in their estrangement and asked each other for forgiveness. Those words were never spoken.
Instead, it was a simple reunion of siblings who, after all their conflict, still loved each other. It was one of the most beautiful things I have ever seen two humans do. They set aside their disagreements at an important inflection point to accept and love each other with unstated forgiveness.
The two of them talked for ten or fifteen minutes before Lewie hugged her and stood up to leave. I walked with him and Kay to the door and hugged him again.
“It was really great to see you. Thank you for coming. I’ll call you as soon as she dies.”
I explained that there would be a memorial but no funeral and made sure he understood that mom wanted him and Kay to attend.
It was dark when they left and the woods were covered in a blanket of snow. As I watched them pull out of mom’s driveway, I was struck by how that night looked similar to how I imagined mom’s story of her brother sitting in his truck during a dark, snow-fallen night. I was thankful to have witnessed a reconciliation that was quite a bit different than a story of late-night intimidation. I was thankful to have been witness to my mom and my uncle embrace each other with love and forgiveness.
When I turned off the outside lights, I turned around to see my mom beaming happily. She opened her arms to me and I knelt down to hug her.
“Thank you,” she said.
Too much chemo. Too much radiation. And way too many mastectomies
“Why Doctors Are Rethinking Breast Cancer Treatment“ is the cover story of the current issue of Time. The article leads with one of the most important questions a person freshly-diagnosed with cancer can ask:
“What if I do nothing?”
After heart disease, cancer is the second most lethal cause of death in the United States, followed by chronic lower respiratory disease, accidents, stroke, Alzheimer’s and diabetes. A diagnosis of cancer is one of our society’s greatest fears because cancer is often perceived to be as inescapably lethal and cruel.
Fear and the accompanying sense of urgency which follows a diagnosis can result in patients making treatment decisions without ever asking what seems to be a nonsense question in the face of an obvious threat.
In his May 11, 2015 New Yorker article, “Overkill,” surgeon and author, Atul Gawande addresses the problem of over-diagnosis and over-treatment of chronic diseases, particularly cancer. Gawande refers to an analogy used by H. Gilbert Welch, a professor at Dartmouth Medical School and author of Less Medicine, More Health:
…we’ve assumed, he says, that cancers are all like rabbits that you want to catch before they escape the barnyard pen. But some are more like birds—the most aggressive cancers have already taken flight before you can discover them, which is why some people still die from cancer, despite early detection. And lots are more like turtles. They aren’t going anywhere. Removing them won’t make any difference.
We’ve learned these lessons the hard way. Over the past two decades, we’ve tripled the number of thyroid cancers we detect and remove in the United States, but we haven’t reduced the death rate at all. In South Korea, widespread ultrasound screening has led to a fifteen-fold increase in detection of small thyroid cancers. Thyroid cancer is now the No. 1 cancer diagnosed and treated in that country. But, as Welch points out, the death rate hasn’t dropped one iota there, either. (Meanwhile, the number of people with permanent complications from thyroid surgery has skyrocketed.) It’s all over-diagnosis. We’re just catching turtles.
The Time article tells the story of Desiree Basila and her reaction to a diagnosis of breast cancer. She managed to step through the panic that she felt the morning after her diagnosis and began to do some research on her own. She learned a few important facts:
- Doctors are not always tolerant of inquisitive patients
- The doctor’s recommendation for a mastectomy didn’t acknowledge the disagreement in the field on how best to treat ductal carcinoma in situ, her kind of cancer
Basilia met with Dr. Shelley Hwang at the University of California, San Francisco. Hwang recommended a lumpectomy. In response to Basila’s exasperated question of doing nothing, Hwang replied, “Well, some people are electing to do that.”
Basila was ahead of the curve in making her decision to refuse the traditional treatments for breast cancer and opted instead for taking a drug called tamoxifen to block estrogen because of its tendency to cause growth in tumors.
Both men and women would do well to read the Time article. It may surprise you to learn that with all the effort devoted to curbing fatalities related to breast cancer, the annual death rate remains at 40,000 women each year. For the past thirteen years, about 40,000 women have died from breast cancer. For all those mastectomies and lumpectomies, not much has been done to curb the mortality rate of cancer.
This is maps with Gawande’s observation that we have tripled the number of diagnoses of thyroid cancer in the United States but the death rate has not decreased as a result of the increase in detection.
My exhortation is not to say that chemotherapy or radiation is a bad decision. It is to say, however, that it is important to move past the panic and fear of a diagnosis of cancer and take the time to understand the specific kind of cancer and to consider whether one of the possible approaches is to monitor closely and wait to see what happens.
In my book, Dying With My Mom, there is a chapter on the importance of asking “What if I do nothing?” Asking this question places more responsibility on the patient to learn about their disease, to seek multiple opinions and to look for evidence that doesn’t support the diagnosis. Choosing chemotherapy may well be the best course of action. Given the hardship of chemo though, wouldn’t it be to one’s advantage if they were informed and confident that a doctor isn’t just prescribing chemo out of laziness, habit or financial gain?