I am touched by the sensitivity of this doctor. Here as an article with pearls of wisdom.
Sep 13, 2012, 12:01 AM
The Widow’s Doctor Visit
By MIKKAEL A. SEKERES, M.D.
I walked into the examination room and saw her sitting there, her arm around her 10-year-old son, her teenage daughter across the room.
“Hey, guys!” I greeted them, probably too loudly. I sat down and asked the children about school and their friends, until we circled around to talking about their father.
“We wanted to come to get some closure,” their mother said. “I talked it over with the kids, and we all decided this would be a good thing to do.”
Like most of these calls, this one came a few months after my patient had died. So far they have all come from women, almost always a wife.
A former wife, now a widow.
I specialize in treating leukemia, and entered my profession fully aware of the grim statistics: Approximately 7 out of 10 people I meet will die from complications of their disease. I always send a card to the family after a patient dies, reflecting on how that person made so many lives better, including my own. I offer any help I could possibly provide, which sounds anemic, I know, because the help I gave in the past clearly wasn’t enough.
This patient’s widow had arranged the meeting for a Friday morning in early April, when her children could also be there. She was in her 40s, and she had always come to earlier appointments with her husband prepared, with questions and medications organized. I could tell they were close, the way they sat holding hands whenever I met with them. His leukemia, which was particularly aggressive, shrugged off the best of our chemotherapy, and he died two days before Christmas.
At these visits, the agenda varies. Often widows come asking, “What if?” What if the leukemia had been diagnosed earlier? What if the infection had been treated faster? These questions are not accusatory but stem from what, I assume, is a need to revisit earlier events, in the desperate hope of changing the outcome.
The question they really want to ask is, “What more could I have done to prevent this?”
I try to reassure and support them. One patient, a minister, commented that my job was “pastoral.” I tell these women that they did everything humanly possible, that their husbands were lucky to have such supportive wives.
And most importantly, I try to offer them forgiveness.
I addressed the children, asking them if they felt all right coming here, if maybe they had also kind of dreaded it. We talked about what a terrible disease their father had, and how, despite all the medicines we tried, it still proved even more awful than we thought. I told them how proud their father was of both of them.
The boy’s eyes began to water, and he grabbed a tissue box. “Allergies,” he said, blowing his nose. “They’re really bad this year.”
I looked down and noticed his shoes. “You know, you’re wearing the same Sperry Top-Siders as your dad. You must be a fancy dresser like him!”
“He got his sense of style from his father, for sure!” his mother said. Her son gave us a half smile.
I asked them what they had told their friends about their father. The daughter answered, describing in highly technical terms her father’s diagnosis and therapies, and eventually his demise.
“Wow! You sound like you’re ready to be a doctor,” I said. “When can you start work?”
“Actually, she is thinking of becoming a doctor,” her mother said. The girl beamed.
“I’m just going to say this, in case you both were wondering,” I started. “It’s O.K. to be relieved that your dad has died, meaning that you don’t have to worry about him being sick, and hear about his leukemia at the dinner table every night. It doesn’t mean you don’t love him to be a little bit glad that his medical problems aren’t the focus of your lives anymore.”
The daughter nodded vigorously. Her brother quietly sobbed. His mother rubbed his back and pulled him closer.
“Their father wanted us to go on a trip to the Florida Keys, but we couldn’t get away when he was sick, so the kids and I went over spring break,” she said. “To honor him.”
Her daughter piped up: “The day we got there, I lay in a hammock by the water, and I looked down and saw this empty glass bottle with a cork in it.”
“A bottle with a cork,” her mother echoed. “Can you believe it?”
“We wrote a letter to my dad,” the girl went on. “And put it into the bottle and threw it in the water.”
“And then what happened?” the woman asked, looking at her son.
“It came back,” he answered, smiling. “We threw it in, and the water brought it back.”
“Your dad wasn’t letting you off that easy, was he?” I asked.
“That’s exactly right!” their mother almost shouted. The children laughed this time.
“We had to throw it back in. And this time it stayed,” the boy said. “It stayed.”
The room grew quiet as we thought about the way the water had embraced the bottle, as if accepting the words they had written to their father.
As we stood up to hug one another goodbye, I tried to figure out what had just happened. I felt as if a weight had been lifted from my own shoulders. When one of my patients dies, I ask myself a thousand times over what I could have done better. I hope that makes me a better doctor for my next patient. I suddenly realized that I had been deeply worried about this patient’s family, that maybe they felt I hadn’t done enough for him.
I guess I needed to be forgiven just as much as they did.
Dr. Mikkael Sekeres is director of the leukemia program at the Cleveland Clinic.
Everyone has a story. I sat next to Carol on the airplane. I told her my story and she told me hers. Her sister died at age 56 from FTD, Frontal Temple Dementia. She lived alone, was religious, and did well for herself. The sisters used to travel together, both being single. But, then Carol became her sister’s caregiver. She had to make decisions for her which weren’t easy, like letting her receive a pacemaker even though her brain would continue to shut down her nervous system. She got a pacemaker. Eventually, she had to move into assisted living. Carol put her in a very nice place, and got her round the clock care so she was never alone. After all, her money should be used to care for her in the best way possible. She would hallucinate, but every once in a while the real sister would say something like, why is this happening to me? Her sister was a writer and wrote all the time until she could no longer. Her manuscripts are in Carol’s possession. She has started to read them voraciously to keep her sister’s memory alive. A single tear fell as she told me how it took her a long time to even talk about her sister because it was too difficult. I’m guessing I was one of the first strangers she told. Always easier to tell a stranger something personal. She did well at holding back the stream of tears with some deep breaths. I told her that her sister knows she is being remembered and that she is sending the love right back down.
“Are you an oral cancer survivor?” I asked the man sitting next to me in a first class seat from Detroit to Seattle. He clearly had an indentation in his neck in addition to scarring. He answered, “Close, but no, I had Lymphoma”.
He teaches Dance Dynamics around the world. What’s that? Understanding where movement begins in the body. Where is that? I guessed the heart. Then, the brain.He shook his head. Then I asked if he thought I could guess it. He said, “Probably not. It’s the sacrum.” He explained it’s the only body part which is absolutely necessary to dance.
I shared my cancer story and asked him his. For years, he regularly got a swollen lymph node in his neck and his doctor would prescribe antibiotics. It would go away. One day while working with a student, he got kicked on the side of his face. After that, the lymph node did not go away and the diagnosis was close behind. He had a maximum dose of radiation, no chemo and given a 20% chance of surviving two years. That was 30 years ago. I admitted I was given a 15% chance of surviving 5 years. We high-fived.
During radiation, his earlobe began to itch. He scratched and his earlobe fell off in his fingers. I checked the size of his other lobe and it was significantly larger. In the beginning, he had 60% numbness on the side of his face and neck. Now he is at 30%. He will never forget the smell of burning flesh in the radiation suite.
Barry dances and teaches dance all over the world. The next time I am in Detroit, he promised to give me a dance. I told him if he dips me, he has to hold my head since I can’t hold it up myself with only one neck muscle. He informed me that it’s dancing etiquette to hold a woman’s head and he would have it no other way. At the end of every Dance Dynamic lecture, he inspires dancers with his perspective on life. Despite neuropathy and pain, he is coined the ‘Dancing Yodo’
I was driving to Boston up 95 listening to LL Cool J on the radio, and a line came into my head:
My name is Eva Grayzel
I gotta story to tell
That’s good, I thought. I turned off the radio and the rhyming lines kept coming. I had to keep pulling over to write them down!
I thought it was a canker sore, just wouldn’t go away.
I hurt and my dentist had nothing to say.
I told the oral surgeon this sore won’t quit.
It even gave me an earache. I was sick of it.
I was desperate for answers. I needed a solution.
But, all along I was living a delusion.
You ready for the DX, the diagnosis?
Stage 4 Oral Cancer….Holy Moses!
If a canker sore doesn’t go away
It could be oral cancer, catch it early, don’t delay
Hoarse voice, lump in neck, persistent cough
It could be oral cancer. Don’t shrug it off.
You’d think this disease is for those who smoke and drink.
But look at me, I’m not the type you’d think
would get this disease. But, I made it through the hoop
I’m lucky to speak, so I need to give ya’ll the scoop.
If a sore doesn’t heal within two weeks,
Go to a dentist, oral surgeon and let them take a peek.
Go to a practice that has current eduction
in oral cancer so they make the right evaluation.
I survived so that I could tell ya my story.
But, I’ll spare you all the details of my surgery so gory.
Keep pestering docs until the problem goes away
So you don’t go thru what I did – listen up – Hey!
Know the early signs when they check your tongue and more
The lips, cheeks, throat, palate, and the mouth floor.
Six-Step Screening tells you ‘what the heck is it?’
And what to expect at your next dental visit.
With a reconstructed tongue and ONE neck muscle to boot,
I can still rap and even break dance, what a hoot!
Oh ya don’t believe me…Hey, guys give me a beat.
This silver-haired woman can still turn on the heat.
(POP and BREAK dance)
Raise awareness. Shout it out.
Saving a life is what it’s all about.
I wanted to put it out to the world. So, I had a friend film it in a dental office….it was cute, but didn’t have the impact it could because I had no music track. I started doing it in interviews, and school shows, but once again, without the music it didn’t become what it could.
I started looking around for a rap artist to work with me. I made connections over the next year, but no one felt right. I wanted a clean, non-vulgar, artist who could help compose the track and give me some coaching, which my children insisted I needed. Through a local DJ, I found that guy in Gallo. Gallo was worth the wait and everything I was looking for.
After performing the rap with the track at lectures, I began to dream about having my own music video. What better way to get information to young people who are increasingly more at risk for oral cancer? I arranged to interview a recommended music video director Freddy Savage at the mall one day – and we hit it off. He got the message, the purpose, and my zaniness. Through Freddy, I met Blake and his dancers. Needing a location to film the video, I went to Nardi Studios where my daughter took dance as a child. Tammy Liiro, the owner, offered not only the space but her protege students. We picked a date, and whoever could make it was invited. Nothing like spontaneity! We pulled off the dancing part of the project in one day.
Freddy wanted the story to be told visually, too. I wanted my daughter Elena to play ‘young Eva’ but her school schedule didn’t allow for it. Krystal Yavorski stepped up to the plate. How did I find Krystal? Her Dad was repairing our roof and deck. Wanting to earn money, she was helping him out one day. When I heard a female voice, I had to stop my work to see who was on the crew. I needed a gardener, a house cleaner…and an actress! Krystal filled the bill.
Once it was edited, I held onto it. I didn’t want to release it to the world without a purpose a reason. If Michael Douglas was diagnosed after it’s creation, I would have jumped on the bandwagon with it. I waited two months during which time I asked some Foundations and companies if the video was something they would want to sponsor. No luck there. Then, COPING magazine decided to publish an article I submitted. With a readership of one-million, I knew the time was ripe.
In addition to that, I’m auditioning for America’s Got Talent in two weeks. If I’m talented enough to beat the competition, I may get some national exposure for the video, which will raise awareness and save lives. How amazing would that be? One project at a time. One day, one hour at a time. Slowly but surely, the world will know about the existence of oral cancer, a devastating disease that can steal everything you live for: eating, speaking, appearance… I hope to prevent that from happening! Help me by posting your comments and sharing the rap. Thank you readers!
It isn’t easy to score with free media attention. What was it about my story that captured the attention of this particular online magazine? Was it the catchy title, ‘Tongue-Tied: A Story NOT Silenced by Oral Cancer.’ Was it the bold flyer designed by my graphic artist at Patadigital Designs? Perhaps, the email came across the desk of a compassionate editor touched by cancer. I will never know the answer. But I do know that by sharing even just the title, Broadway World is doing their part in raising awareness about oral cancer, a disease that will impact more and more young people due to the Human Papilloma Virus(HPV). Thank you Jessica at the Broadway World News Desk!
The following story is an adaptation of a Buddhist story from the Mahayana Sutras. I give credit to my friend and fellow-storyteller Elisa Pearmain who shared this story which will be included on her next CD.
This story helps me move forward after the Newtown, CT tragedy. It is a reminder that our actions however small have an impact on the fabric of the whole world.
Once Indra the Hindu God of the heavens, invited the Buddha to visit his heavenly palace. Wanting to decorate the Palace to impress his guest, he ordered that thousands of diamonds be brought. Each gem was then sewn into
a knot on a giant net. The net was hung over the walls and ceilings of his palace.
When the Buddha entered Indra’s Great Hall and caught site of the net of jewels he beamed with delight, dancing to the center of the room. There he turned round and round smiling. “This net is perfect, Indra. It captures the nature of reality so well.” He said, “Every jewel is lit by the same light, and in every jewel is held the reflection of all the other jewels.”
Then he Swept to the side of the room calling, “ Come Indra, look.” As Indra came close he pointed to one diamond a gave it a gentle flick. “See,” he beamed pointing to the changing reflections all around the room, “when one diamond is moved it changes the reflection of every other one, not just the ones closest to it. How beautifully this describes the truth that all beings are connected and our actions do affect one another.”
The Buddha looked at Indra more seriously now, “This is why we must practice compassion and kind action for all beings, for they are as much a part of us and our world as we are of theirs.”
The great God Indra wept with his new understanding of interconnectedness and oneness. “This net is not meant to decorate my palace alone,” he said. “It must be seen and understood by all beings.” He gathered up the great net in his arms and took it out onto the balcony of his palace. There he flung it out into the heavens for all to see.
And every night its beautiful diamonds shine all round the world, to remind us of our oneness and inter connectedness with one another.
Today, I had a basal cell carcinoma removed from my chest in my radiated field just at my clavicle. It’s small. It’s not a cancer that spreads or threatens life in any way. The day before my scheduled surgery, I was telling my Mom that I need to tell my children. They are both at college, cramming for tests. She told me, “It’s nothing. I’ve had several removed myself. Why bother them?”
I said that I have a few reasons why children should be told, no matter what age they are:
My mother rescinded her comments and agreed with me wholeheartedly
I’d love your comments about this. Have you had a good or bad experience when sharing a ‘diagnosis’ with children?
RSVP right here for convenience
Joann needs to hear stories of survival and overcoming adversity as she continues to heal from her losses. She is the manager of the Comprehensive Care Clinic at the University of Louisville School of Dentistry, but to the students, she is the go-to person for emotional distress because she coped with more than most human beings can imagine. After my lecture, she hugged me saying, “Your will to survive inspired me beyond words.” I asked her to join me for lunch.
Joann smiled through her tears as she told me about her ‘miracle’ daughter conceived against all odds and how she lost her to a brain tumor at age 19. Just before her daughter passed away, her beloved husband got ill. His health went downhill and a few years ago she sold their home and moved in with friends so he could have the 24-hour care he needed until his passing.
Believe it or not, I had heard this story before. Ronni survived the passing of her ‘miracle’ daughter , followed by her husband, a physician who died of a broken heart when he couldn’t do anything to save their only child.
Neither woman has ever met another who had survived the same. Both were excited to speak to the other. I was excited to help make it happen! But, I can’t take all the credit. Dental student Jake Masters, president of the American Student Dental Association Louisville Chapter, found me online in search of a speaker to inspire the student body. Jake made an extra effort to encourage Joann to take an hour out of her day to attend the presentation. Because of his urging, she attended.
At first, I thought, my non-Jewish friend who wished me a ‘Happy Yom Kippur,’ needed a better understanding of the most notable Jewish holiday. After all, it’s not a joyous event where you wish friends a ‘Happy’ anything. It’s a reflective day. It literally means, Day of Atonement, the day we ask for forgiveness and offer to forgive, despite the personal challenge. It’s about repairing relationships. It’s about acknowledging where and how we can improve ourselves. The prayer in the photo is one we say over and over again. It’s the day of judgement where the Book of Life is opened and you hope your name is signed in there for another year.
Today, I learned that maybe my friend wasn’t so far off! Apparently, an interpretation from ancient times says the word ‘Kippur’, or it’s plural, ‘Kippurim’ can mean ‘with’ Purim. Purim is a Jewish festival commemorating the defeat of Haman’s plot to massacre the Jews. There are costumes, merriment and we give gifts of food and treats to one another. Purim literally means ‘lots’ or ‘lottery’. When we win the lottery or win against a government official who wants to massacre a people, we feel immense joy, we celebrate. So, on Yom Kippur there is an element of celebration of the joys in our life.
Now, I have a whole new perspective about what I used to think was a somber, solemn day where we deny ourselves food, a basic need, to inspire us to work harder on ourselves. We are obligated to recognize our joys! The people in our lives who provide unending joy. Sometimes joy is short-lived: seeing a rainbow or accomplishing a task. But we need to acknowledge the joy that comes from nourishing and nurturing friendships with family and friends. We are challenged to consider how we share our joy with the world.
I feel a deep-seeded overwhelming joy for every day of life I’m given and the many people in my life who enrich me. It is my obligation to share the joy I feel and bring it into the world, so, as the Rabbi said, we can rise up like the angels and sing Halleluyah so the world will rejoice.
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