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
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.
Mom and Lewis, however, 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?
I exited the track to enter the pit lane of Laguna Seca, the legendary race track in Salinas, California, found a spot in the paddock and powered down my car. I had completed the last session of a high performance driving school on a beautiful June day in 2008 with the BMW Car Club. The day was the fulfillment of a long-desired goal of driving at Laguna. The countless times I had driven the course on Xbox were no comparison to the reality of driving it in real life.
I sat there for a few moments to relive the highlights of the day. I flashed back to the first time I drove down the Corkscrew in the morning. I gasped as I came over the crest of the hill and dropped rapidly down three stories of spiral tarmac. I replayed my second session on the track, where I skimmed apex after apex and remembered with some regret how my last two sessions were driven too fast and and too poorly. Nevertheless, I was filled with a deep sense of satisfaction and the first person I wanted to share it with was my dad, Jay.
As the other drivers packed up their gear from around the paddock, I called him in Houston and told him what went well, what wasn’t so great and what was just sheer fun. I heard pride, happiness and a bit of envy in his voice. I also heard fatigue. He had been diagnosed with leukemia and his treatments at a county hospital were sporadic because he lacked health care coverage. He had undergone a recent course of treatment and was in the hospital when I called.
My dad gave me a love for driving. He handed off his aggressive driving style as well. He had no fear and was ready to let any bone-headed driver know of their error through honking, gestures and retaliatory maneuvers that were neither polite nor safe but which made their point.
I loved the weekends because he and I would drive in the mountains or desert of greater Phoenix. Most of the time, he flung his Datsun 240Z on the mountain twisties but sometimes we would just drive someplace into the desert, “get lost” and then find our way back. We probably didn’t get very lost but I thought we did and I secretly enjoyed being a bit fearful that we wouldn’t find our way home. Inevitably, as the sun dropped lower in the sky, he would suddenly say, “There’s the road we need!” and with a sudden turn of the wheel, we’d be on a road that brought us back to the city.
While my engine cooled down in the paddock with periodic tick-tick-tick sounds, I told him a couple of my memories of driving with him. He laughed as he realized that one of my favorite mountain drives was also one of his his.
“You have conveniently forgotten that you were so terrified that you got out of your seat and curled up in the footwell.”
I believed it. He often terrified and thrilled me by taking the direction up the mountain that placed the passenger side of the 240Z on the outside edge of the road. As he took turns at alarming speeds, all I could see was blue sky, a sliver of blacktop and plenty of sheer drop-offs from which we could easily have careened to our deaths.
I didn’t remember cowering in the footwell but I do remember the visceral fear I had whenever we drove the mountains together. I loved the fear. I loved the feeling of forces pulling my body as we turned left and right, how I was pressed back hard into the seat when he accelerated and how my body was flung forward against the seatbelt when he braked. Whenever I would sneak looks at him as he drove he sometimes had an expression of joyful concentration. I believe my dad was most himself when he was driving a car or splayed under one on his back while putting a wrench to a bolt that held together something that had gone wrong.
While he was skilled at coaxing speed and more life from his cars, he was substantially less successful as a father and ex-husband. He had been a consistently absent, inattentive dad but there were times when he came into my life in critically formative ways. I carry a lot of him inside me, both good and bad. Talking about Laguna endeared him to me as I realized that we were quite a bit alike. As we came closer to the end of our conversation, I felt that he and I were, at that moment, the closest we had ever been.
Reluctantly, I told him I needed to go. I was tired and still needed to drive back to Cupertino.
He told me he was proud of me, that he was glad I loved to drive and that he appreciated the call to share the day. As I drove home, I felt like something had changed for me as a man. I had honored my dad and included him in what was for me a significant life event and even though I was 42, I felt like I had allowed him to dwell more deeply inside me. I accepted Jay Reynolds for who he was that day and holding him hostage for the sins of his past was no longer satisfying for me.
The next day, his wife, Vicky called me to say that I should quickly come to Houston to see him because he didn’t have much time left.
The flight to Houston was hard. There was a lot that was unresolved between us and I had no idea if there would be any opportunity to resolve what had been left undone. I had tried to talk about our past with him several times when I was younger but my approach was more accusatory than conciliatory. For obvious reasons, he wasn’t open to that approach. He knew he had failed me in some important ways but could never bring himself to admit them to me. He tried to make up for it in other ways but he never admitted his choices to abandon mom and me.
It was my dad’s nature to not be obligated. I know he cared for us but the commitment was too much. He knew he had abandoned us but he had his reasons. I wonder if the reason he could never apologize for not being around was because he was living according to his nature. Maybe an apology felt like he wasn’t being true to himself. Or maybe he was trapped by his shame. Once a person is isolated by a moat of shame, they feel more shame for having stayed in the moat for so long already and that leads to even more shame that traps them in the moat even longer.
Whatever the reason, we never got to a place of agreement about the past and I had no idea how this trip would to play out. I hoped for a clear conversation of mutual forgiveness but also prepared myself for nothing like that at all.
As soon as I landed, I went to the hospital. Vicky had the sensitivity to let us have some time alone together. We talked about Laguna Seca again and he told me about his experiences at the hospital over the course of his episodic leukemia treatments. As we talked, I was surprised how much love I had for him. It was suddenly apparent to me that after all the years that I hated him, I realized that I still had the love of a son for him.
There was a time many years earlier when I visited him in Arizona. I was probably six or seven years old. Dad’s friend Jim came over to visit and the two of them were shooting the shit together. I curled up next to him with my head on his chest. I was awed by the resonance of his voice and the sound of his heart beat. I couldn’t understand how there was much more resonance and depth in his voice with my head against his chest than it sounded normally.
As a man, I can parse this memory in a way that helps me recognize that evening was the first time I became aware of and connected with my dad’s masculinity. I wondered if I would have a voice like his some day. I kept expecting him to push me away because of embarrassment in front of Jim but he never did. He did not shy away from that moment. It was one of the few times where he made himself vulnerable to me. Perhaps his vulnerability explains why I vividly remember that evening with him and his friend.
As dad and I talked in the hospital, I wanted to curl up in his lap like that again. To hug him and put my head to his chest and listen to his voice. I didn’t do it because I didn’t understand that moment then as I do today. I wish I had possessed that awareness because if I had, I would have pulled my chair up next to his bed and hugged his chest.
After a while, he said he was tired and asked if I could come back in a couple hours. I agreed and left to find Vicky in the cafeteria.
We went to a nearby restaurant and during the meal, dad called her. She looked at me with tight lips as she said, “I understand. It’s ok. We’ll see you tomorrow.” After she hung up she explained that he had crapped in his bed, was embarrassed and wanted to know if we could see him in the morning.
Sometime around 1am that evening, Vicky called to tell me that dad had a stroke. He had been intubated and if we got there quickly, we could see him before he died. Fortunately, the hotel was not far from the hospital and we met in the lobby before heading up to the room where he was.
He was in a somewhat large room with an open floor plan. There were less than ten other patients in the room. Curtains separated the beds but not all of them had been pulled for privacy. We found my dad and he passed back and forth from unconsciousness to mumbling incoherence. He knew we were there but he had no ability to speak. That being said, it was indisputably obvious that he was pissed off. He had been adamant about not being resuscitated and he could tell he had been intubated.
Vicky explained to him the staff intubated him to keep him alive until she and I got there. He grunted and gestured his demand to have it removed immediately and it was.
Once the tube was removed from this throat, my dad’s heart and respiration rates dropped in a slow decline. His respiration rate would be fairly constant as his heart rate gradually dropped a few beats per minute and then stabilize. Then his respiration declined. After the first couple iterations of this pattern, I realized that this was how it would end. I was gripped by the magnitude of the realization that not only was my dad dying but that I would be with him when it happened.
It’s hard for me to put this into words but somehow 42 years of life with him were compressed into a single moment. All the disappointment and anger and unfulfilled longing for him to actively be my dad were compressed and flattened into this second of realization that he was going to die very soon.
We had never reached a resolution to how both of us had hurt the other. It had never been completed and though living through all those times of feeling rejected and unwanted by him was painful for me, they suddenly compressed into this one moment in time. I realized none of that mattered anymore. I was a man, I was no longer a boy, I was his son and he was my father. I was a man now and I needed to accept that my life as a boy no longer mattered.
I grabbed his hand in both of mine and said, “Dad. We are clear. You and I are clear. You don’t need to take any of this with you.” A couple breaths later he sighed deeply, as if some familiar, ancient burden no longer pressed on him. He didn’t acknowledge me in any way that I recognized and his breathing and heart rate continued to drop until they both fell to null.
My dad was dead and I was with him. I was emotionally blank for some time. Maybe a few moments, maybe several minutes.
Then I felt an intense rush of jealousy but I didn’t understand why.
Then I realized: he knows. He knows what I don’t know and what I long to know. He’s on the other side.
It strikes me that the muteness between the dead and the living is perhaps the greatest distress that the living have to adjust to. In a moment he was gone and in that same moment or some other moment not far away, he had moved into the next phase, not a chrysalis any longer and hopefully as someone free to live without pain and hardship.
My reaction to his death was not sadness but jealousy and that jealousy emerged from a sense of wonder that I was with someone who made that transition as it happened. If it weren’t true that the dead and the living are forced into an aching muteness, a sudden separation from communication, then we could know what is on the other side of death. Yet, there is only silence. We are left with myths and stories that try to fulfill our desperate need to know what is on the other side of death. We long to believe that there is something on the other side that makes all of this sorrow, pain, glory, beauty, strife and love worthwhile. We all carry enormous quantities of emptiness, lovelessness and loneliness and we ache to know: is it worth it?
Several weeks later, Vicky flew out to San Jose to spend a few days with me and Tanya. We drove down to Monterey to a beach not too far from Laguna Seca to spread his ashes. Vicky went to the water first with a plastic bag filled with dad’s remains. She stood in water up to the middle of her thighs and held my dad’s ashes above the waves for a while. Her back faced us as she talked with her husband. Then she turned her back to the breeze and slowly poured some of my father’s ashes into the Pacific Ocean.
I walked toward her as she returned to shore. She handed the remaining ashes to me and I walked parallel to the shore for a while. When I stopped, I reached in to the bag for a fist of his ashes and opened my hand as I lowered it into the water. The motion of the water ebbed across my hand to carry his ashes away each time I lowered a fist full of ashes. When there was nothing left, I tipped the bag upside down, rinsed out the bag and walked back to shore.
A once-prominent metro Detroit physician sentenced to federal prison for making millions of dollars giving unnecessary treatments.
This is a horribly egregious case where a Michigan oncologist prescribed chemotherapy for over 550 patients who didn’t have cancer and fraudulently earned $17 million while doing so. His punishment was 45 years in federal prison, effectively handing the 50 year old man a life sentence. A term during which in which some people would be tempted to hope that he dies of cancer.
This case is a powerful example of how much trust patients place in their doctors. The very great majority of doctors are worthy of patient trust but doctors can be fallible. It is possible to simultaneously trust a doctor and to also seek additional input from other doctors.
It is important for any patient diagnosed with a serious disease to seek additional opinions from other doctors. If the victims had sought second and third opinions from doctors unaffiliated with Fata, they would have found that they did not have cancer.
A brief article about what a woman said to her father who had a rapid decline toward death and couldn’t talk anymore.
Source: What to Say to Death — Medium
Here are two examples of the words she said.
It must be hard to work in Marketing at a cigarette company.You spend your days trying to convince people, especially young people, that smoking is cool while minimizing your target market’s awareness of smoking’s addictiveness, it’s chronic threat to health, its smell, it’s expense and it’s negative social perception.
The folks over at Virginia Slims came up with the brilliant idea of distracting its loyal smokers from the adverse effects of cigarettes by associating the brand with the glamor, and relaxation of a spa experienced with other beautiful women, who also are presumed to be smokers. At least, that’s what I think their message is based on my review of the because my mom received their brochure yesterday.
If my mom signs up for the Spa giveaway, she could get a luxurious spa treatment of her choice plus she would be entered into a drawing to instantly win spa-related prizes. Of course, her chances of getting lung cancer are better than her chances of winning a sandalwood candle.
One of the issues I discuss in the book Dying With My Mom is whether every occurrence of a cancerous growth needs to be closely monitored and treated. There are at least two reasons why a growth doesn’t necessarily need to be treated.
First, not every growth presents a mortal risk to a patient; and second, even if a tumor poses a mortal risk, medical interventions like radiation, major surgeries and chemotherapy may not appreciably extend a person’s life and will likely seriously degrade the quality of one’s life.
In a recent article in The New Yorker, surgeon Atul Gawande describes a significant problem of over-diagnosis and over-treatment of chronic diseases, particularly cancer. He quotes a metaphor developed by H. Gilbert Welch, an expert on over-diagnosis:
…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.
…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.
For all the research to find cures for cancer — which is the United States’ second most-lethal cause of death after heart disease — the mortality rate has not been substantially reduced.
The decision to pursue major medical interventions is a difficult one. Few life decisions present such significant consequences. Few decisions involve confusing probabilities, fear, hope, and suffering as does the decision to pursue or forego treatment for cancer.
If we set aside the deep anxiety and fear we have of death, what most people want when they die is a good death: an experience that involves minimal suffering, a decent degree of functional autonomy, mental coherence, the ability to enjoy the presence of loved ones and an experience of slipping into death peacefully.
Yet, the typical approach to a cancer diagnosis involves demanding treatments that create their own types of illnesses as the cost associated with finding a cure or a few more months of life. A good death is frequently inhibited by the medical interventions that precede the death. The treatments can be so traumatic that patients and loved ones suffer physically and emotionally, and loved ones who lobbied for at-any-cost interventions often struggle with guilt as they realize too late the consequences of such treatments. They recognize later that a good death is difficult to experience after such demanding experiences and some end up dealing with regret, anger and guilt in addition to the grief of loss.
I am not saying that it is wrong or foolish to pursue a cure or treatments to retard the advance of a chronic disease like cancer. What I am saying is that the dominant model of health care prescribes profound treatments for chronic diseases that may not appreciably extend a patient’s life while simultaneously degrading the quality of their remaining days.
The decision to select or refuse treatments like radiation, surgery and chemotherapy is very much a deeply personal decision and one that doesn’t fall neatly into a logical list of If/Then criteria.
In Dying With My Mom, I address some of the reasons why people select various treatments and I also discuss other issues that may help people reframe the tendency to seek treatments to the very end, even when those treatments are medically futile.
Were you to live three thousand years, or even thirty thousand, remember that the sole life which a man can lose is that which he is living at the moment; and furthermore, that he can have no other life except the one he loses.
This means that the longest life and the shortest amount to the same thing. For the passing minute is every man’s equal possession, but what has once gone by is not ours. Our loss, therefore, is limited to that one fleeting instant, since no one can lose what is already past, nor yet what is still to come–for how can he be deprived of what he does not possess?
So two things should be borne in mind.
First, that all the cycles of creation since the beginning of time exhibit the same recurring pattern, so that it can make no difference whether you watch the identical spectacle for a hundred years, or for two hundred, or for ever.
Secondly, that when the longest-and the shortest-lived of us come to die, their loss is precisely equal. For the sole thing of which any man can be deprived is the present; since this is all he owns, and nobody can lose what is not his.
Researchers will bring the vaccine stateside and track it for the FDA so it can be manufactured and sold in the US.
This Cuban vaccine inhibits the spread of lung cancer. Life extension is measured in months not years. The side story of this vaccine is how clever Cuba’s medical community is in the way they approach health care. Cuba also has a surprisingly low cost per capita for health care.
This is the first Mother’s Day when I can’t call my mom and wish her happy Mother’s Day. I’m a little bit sad about that but I’m mostly grateful that the last months of her life were some of the best we had together.
This photo was taken a few days before Mother’s Day 2014 on my first trip back to Grayling. During this time, she and I worked through our past and forgave each other.
I was a strong-willed child and I created a lot of difficulty for her when I was a kid. When we had bad conflicts, she would often yell, “I wish you had never been born!” It hurt me deeply and in the weeks leading up to the first trip back to Michigan, I realized that this was a piece of our history that I needed to resolve with her.
As an adult, I knew that she said those words out of great frustration. I knew that in those moments, she meant what she said but beyond the moment, it wasn’t how she really felt. The adult Dave knew where it came from. Dave the child needed to know: Did you really wish I had never been born?
I asked her that question. It was one of the most difficult, vulnerable questions I’ve ever asked. She smiled and said, “David, you are the best thing that came from my life. I said those words in difficult times but I didn’t mean them. You have no idea how glad I am that you were born.” I knew intellectually that she didn’t mean it but to hear her say it healed me.
I hadn’t seen my friends in Lansing for eight years, so I planned to spend time with them for a few days after I left Grayling. On that Mother’s Day Sunday, I spent a few hours at a friend’s house to watch the Formula One race. I called her during a commercial to tell her that the days spent with her were wonderful. She shared similar sentiments and we hung up.
A few minutes later, she called me back and said, “Hey, I forgot to tell you one thing: I’m glad you were born.”
Best Mother’s Day ever.
I haven’t had to endure a decision about how to respond to a diagnosis of cancer for myself. I have some strong convictions but it’s easy to have strong convictions when they are theoretical and have yet to be applied in the context of a real diagnosis. It is my position, though, that asking difficult, probing questions about whether aggressive medical interventions are valuable is an important exercise for patients and the people who love them.
A few years prior to her diagnosis of lung cancer, my mom and I spoke about our feelings and attitudes toward a terminal disease. Both of us felt that quality of life was more important than extension of life if extension netted only a few extra months of life tainted by the illness caused by the treatment of the disease. As a result of those conversations, mom had papers drawn up that gave to me power of attorney and a Do Not Resuscitate document that conveyed her desire for no resuscitative efforts to save her life. When she neared the end of her life, she made known her wishes that her life be allowed to end naturally with palliative care.
During those conversations, she challenged me several times with ambiguous scenarios that might make my decisions regarding her care tricky. Her values and convictions surfaced plainly to me: she wanted any remaining life she might have to be free from the degradation of any kind of aggressive treatments. If a disease were caught early, she was open to consider chemo and radiation. If not, she would rather live a few months with a high quality of life than extra months suffering not only from a terminal disease but from the treatments intended to deliver her from that disease.
We will all die of something and at some point, medical treatments ultimately become futile. The challenge, then, is to try to discern when a treatment is beneficial and when it vainly tries to postpone the inevitable end of us all. The answer lies somewhere between.
An important question to ask with any kind of diagnosis and recommended treatment is, “What if we do nothing?” Some cancer studies have found that people who refuse late-stage treatment can live longer than people who pursue chemotherapy. Some people undergo chemotherapy, beat cancer and live for several years. Some undergo chemo and have recurrences of cancer that eventually take their lives.
When my mom was diagnosed with stage three lung cancer, she was told she would live six months. She lived a bit over a year with no chemotherapy or radiation.
Of course, this is the trick isn’t it? What if she had undergone chemo? Maybe she would have lived 17 months or even longer? It is a profoundly personal decision based on probabilities, endurance, fear and hope. It is also a decision that affects the lives of family and friends. The intermingling of the needs and desires of many people can make decisions achingly difficult.
In the same month as her birthday, mom called me to tell me she had been diagnosed with lung cancer. Stage Three. She wasn’t going to do any chemotherapy though she might do radiation treatment.
For most of my adult years, I had always imagined that I would feel a sense of relief when I learned that my mom was either going to die or that she had died. This sounds like a terrible thing for a son to say about his mother but such was the condition of our relationship at the time.
When she said that she had cancer, I did feel a flash of relief. I’m not sure I felt it because I had trained myself to expect to feel it or because it was a genuine feeling. It was probably both. At the same time, I also thought, “Oh, shit,” because I wasn’t sure how the remaining months of her life would play out between us.
My first trip back to Michigan a couple months later changed all that. But several months after her death, I struggled with a conflicting feeling that maybe it would have been easier for me if our relationship hadn’t improved over those last months of her life.