Category Archives: Byron

A Sci-Fi Experience

I was happily reminded this month of the very enjoyable January/February reading challenge hosted by Carl V. Anderson (@Stainless Steel Droppings) years ago. His “Sci-Fi Experience” was always a highlight of my winter, and expanded my reading horizons exponentially. It was something that recently happened to my husband, Byron, that reminded me of that fun, immersive experience.

A couple of months ago, when Byron was sleepless due to some side effects of his cancer treatments, he would read articles and listen to podcasts about his cancer. It was fine that he was learning as much as he could about it, but I worried that such reading in the middle of the night would add to his insomnia and would raise his anxiety levels.

As an early Christmas present, our daughter sent him an audiobook, the first in a science fiction series she liked called The Expanse. Byron was not much of a science fiction reader, but we had watched the TV series and liked it. Our daughter told him the books were even better, so he started listening to that instead of those podcasts. The first book was called Leviathan Wakes, by James S. A. Corey (actually two men who collaborate on writing this series), and he became completely hooked on the series! He’s just about to finish the sixth book, the seventh book is ready to download, and he is loving his winter “Sci Fi Experience!”

“Quality of Life” is a phrase we are using often in our home right now. Reading and special book-related experiences like this one greatly enhance our quality of life and are so deeply appreciated during a difficult time.

That Good Night


Many people are unaware of the branch of medicine known as “palliative care.”  Some, who have sort of heard of it, may think it is the same as hospice care, that when you enter into palliative care, you no longer have medical treatments for serious diseases, and you are on the verge of death. But that is not so. The World Health Organization defines palliative care this way:

”…an approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention of suffering by early identification and impeccable assessment and treatment of pain and other problems, physical, psychological, and spiritual.”

That Good Night: Life and Medicine in the Eleventh Hour, is a memoir by Dr. Sunita Puri, who chose Palliative Care as her medical specialty. She tells the story of her training and experiences in medical school that led her to make that choice. And she shares the experiences she had with patients and colleagues, many of whom were not familiar with the type of help palliative care can give patients and their families, and the kind of help and support it gives the doctors treating those patients. It was an eye opening and very moving education for me about a relatively new field of medicine.

From the publisher:

As the American born daughter of immigrants, Dr. Sunita Puri knew from a young age that the gulf between her parents’ experiences and her own was impossible to bridge, save for two elements: medicine and spirituality. Between days spent waiting for her mother, an anesthesiologist, to exit the OR, and evenings spent in conversation with her parents about their faith, Puri witnessed the tension between medicine’s impulse to preserve life at all costs and a spiritual embrace of life’s temporality. And it was that tension that eventually drew Puri, a passionate but unsatisfied medical student, to palliative medicine–a new specialty attempting to translate the border between medical intervention and quality-of-life care.

Interweaving evocative stories of Puri’s family and the patients she cares for, That Good Night is a stunning meditation on impermanence and the role of medicine in helping us to live and die well, arming readers with information that will transform how we communicate with our doctors about what matters most to us.

My husband, Byron, is now in palliative care while undergoing his treatments for cancer (see my post on his diagnosis). I should probably say that “we” are in palliative care, because family is as much a focus there as is his pain management and quality of life help. It is a very individualized care, with much more direct communication, and the team includes the palliative care doctor, a social worker, and a nurse. And all of this care is in support of his ongoing treatments and of his oncologists and other doctors who are treating him. Our palliative care team is helping Byron to have the best quality of life possible as he fights his disease, and they are providing support and care in helping us make the many profoundly difficult decisions of treatment and end of life care. When Byron’s ongoing treatments no longer work and are terminated, he will be moved from oncology and palliative care into hospice care.

Wise and poignant words from Dr. Puri:

“For we will each age and die, as my father told me years ago. We will lose the people we love. No matter our ethnicity, place of residence, income, religion, or skin color, our human lives are united by brevity and finitude, and the certainty of loss. Just as we strive for dignity and purpose throughout our lives, well before the light fades, we can bring this same dignity and purpose to our deaths, as we each journey into our own good night.”

I highly recommend this book. It is very moving and heartfelt, and it has a positive, uplifting, and empowering effect, overall. For those of us experiencing palliative care right now, it is an important and helpful education.

Dr. Sunita Puri…

My Other Reading

Painting by Anna Forlati

My reading has always been all over the place. There are genres I love, like mysteries and gardening books, and I love children’s literature. But reading is how I process most things in life. Books and authors are my guides. I am curious and a learner and have gotten my best education from my books. So simply put, I read all kinds of things, and when I need to learn about a new topic, I dive in head first.

Byron and I are now facing changes and challenges that require a whole new education. Thus, I am reading about all kinds of topics that I haven’t read about before so I’ve started calling this “my other reading.” Many of these books, articles, even research papers are recommended by our current support team which is made up of family and friends, doctors and our grief counselor, and new acquaintances who are going through similar things to what we are facing.

Some of this reading I am doing slowly, over time, because the topic is so intense emotionally. Others I am reading quickly needing the information right now already. And some are fiction that give me a completely different view and understanding of our situation.

This “other” reading is helping me understand, cope, prepare, and live with the certainty and uncertainties of life since Byron’s diagnosis.

My current “other” reading:

Being Mortal: Medicine and What Matters in the End, by Atul Gwandi, after having loaned it to our daughter to read. This is a reread for me. It’s such an important topic, rarely discussed in public, but a book that I think everyone should read. We are all mortal.

The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee, is beautifully written, but difficult (emotionally) to read. I’m reading it a little bit at a time, learning sooo much about cancer, and finding passages that perfectly describe our life right now.

During one session recently, my grief counselor read to me an excerpt from the book, The Wild Edge of Sorrow: Rituals of Renewal and the Sacred Work of Grief, by Francis Weller. The passage she read to me was called “An Accumulation of Losses,” and it really hit home with me. So I ordered that book and am slowly reading it, savoring the wisdom it imparts.

She also recommended that I read the book Cured: Strengthen Your Immune System and Heal Your Life, by Jeffrey Rediger, MD. I was hesitant at first to read this one because “being cured” seemed like such a long shot when we are coming to terms with the finality of Byron’s diagnosis. But as the author says, “We have a lot of work to do, in both medicine and as a larger culture, when it comes to talking about death and understanding what it can tell us about life,” and this book is full of ideas to ponder about life when faced with a terminal diagnosis.

Last year, I read a fiction book that touched my heart. The Springtime of the Year, by Susan Hill, was a story of loss and grief. A young, newly married woman loses her husband in a sudden accident. Her journey through grief and how she found her way back into Life, was beautifully told.

I also recently read a non-fiction book by Chimamanda Ngozi Adiche. Notes on Grief, was about the sudden loss of her father during the Covid 19 quarantine (he did not have Covid), and her own journey through the grief and difficulties of losing him during a pandemic. I wrote a mini-review of it here.

One of the most poignant stories I’ve read about loss and grief is Hamnet, by Maggie O’Farrell. My review of it is here.

And finally, I am reading a lot of Mary Oliver‘s poetry…because she puts it into words…beautifully deep-felt words.

 

A Birthday Celebration

Today our family is celebrating Byron’s 74th birthday. There is chocolate cake and lots of laughter. I reminded him that he told me early in our relationship that he didn’t think he would live to be 30 years old (not an unusual statement from a man facing the draft during the Vietnam War). We will pamper him all day, make his favorite dinner for him this evening, and let him know in as many ways as possible that he is so dearly special to all of us. A happy day!

I Cherish: Beautiful Autumn Days

Byron at the wetlands…

Yesterday was an absolutely beautiful Autumn day. After our recent rainy spell, it was so nice to be able to get out and enjoy the sunshine and fall colors. Byron felt up to a walk with the aid of his cane (didn’t need his walker!), so we headed for Fern Hill Wetlands to enjoy watching all the wildlife and soak in the colors of a lovely autumn day. A cherished time together!

Embracing Mobility

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This week, I have been focused on finishing one of my enjoyable reading challenges. It’s a great feeling to meet a challenge one sets for oneself!  However, it’s another level of good feeling to meet a major challenge that Life throws at you. In the last month, my husband has been faced with another major physical and mental challenge related to his Stage IV metastasized cancer.

One month ago, he finished the radiation treatment he underwent to hopefully lessen the pain in his hip caused by the bone metastasis there. He walked into the five-day treatment on the first day, unaided but limping from his sore hip. Unfortunately, by the end of the five days, he was suffering from a not-so-common side effect from the treatment called a “pain flare, ”  which is an inflammation of the lining of the bone due to the radiation. And it is extremely painful. So for his final treatment, I had to wheel him into the building in a wheel chair.

The inflammation was treated, the pain has slowly lessened throughout the month, and Byron has worked hard to regain his mobility. Truly a challenge! But he has embraced each step in this process, which started with the arrival of a cane we ordered on the day after that final treatment because he could not walk unsupported. A few days later, a simple walker was delivered to our porch, a surprise ordered by his primary care physician! He was delighted with it because he was much steadier getting around the house and could now do some limited walking outdoors. After a week with that more limited walker, we went shopping for his “off road walker,” as he calls it. And he was thrilled with the new walker we found!

So now, he does laps around the house with his fancy walker. We load it in the car and walk the sidewalks around the campus here in this university town. And the more he walks, the better he feels, even though energy and endurance are limited. It was not the kind of month we expected, but I am so proud of the way my husband faced the pain and the setback, and embraced the challenge to return to better mobility, one level at a time.

 

Joseph Conrad Nailed It

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My husband has long admired Joseph Conrad’s writing. Conrad’s stories are both powerful and profound, and his writing is impressively beautiful, especially considering that English was not his first language. Byron’s old, yellowed copy of Heart of Darkness sits on our coffee table these days rather than on the bookshelf.

So I wasn’t surprised the other day when Byron asked me to read a quote from Conrad’s, Lord Jim. He had just run across the quote in his handwritten reading notebook, copied down from his reading of the book in 2018, and told me that the quote described what having terminal cancer is like for him. He said that Conrad nailed it. It is heart-wrenching to read, but I’m glad that he shared these really deep emotions with me, through the words of one of his favorite authors.

I decided to share this quote with you, because I think it perfectly demonstrates a big part of why we read — to find those nuggets of truth that explain, give an understanding of, or put into words what we are going through in life at the moment.

Joseph Conrad, Lord Jim, Chapter 2

There are many shades in the danger of adventures and gales, and it is only now and then that there appears on the face of facts a sinister violence of intention—that indefinable something which forces it upon the mind and the heart of a man, that this complication of accidents or these elemental furies are coming at him with a purpose of malice, with a strength beyond control, with an unbridled cruelty that means to tear out of him his hope and his fear, the pain of his fatigue and his longing for rest: which means to smash, to destroy, to annihilate all he has seen, known, loved, enjoyed, or hated; all that is priceless and necessary—the sunshine, the memories, the future,—which means to sweep the whole precious world utterly away from his sight by the simple and appalling act of taking his life.

August Reflections 2021

August turned out to be a very busy month. It was filled with doctors appointments and treatments for my husband, lingering summer heat, beautiful flowers in the garden, and some enjoyable reading. I am hopeful that, in September, we will spend less time in waiting rooms and more time in our reading chairs or in the garden. We’ll see.

I hope your August was full of good reads and happy summer activities!

Waiting Room Reading

While waiting for my husband’s radiation treatments this week, I read and/or listened to two books and a short story. In all honesty, I did not sit in the waiting room (Covid restrictions), but found a very nice bench for my waiting right outside the clinic.

I started my RIP-XVI challenge early because of this opportune time to read, and I actually enjoyed my waiting time. This challenge is divided into different “Perils” you can choose — “Peril of the Fiction;”  “Peril of the Short Story;”  “Peril of the Screen;”  “Peril of the Group Read;”  “Peril of the Listen;” and “Peril of the Real.”  So obviously, there’s room for all kinds of spooky and mysterious reading and viewing choices!

For “Peril of the Fiction,” I read another book in a fun mystery series that I’m slowly rereading.  Mrs. Pollifax and the Second Thief, by Dorothy Gilman, was the 10th book in the series. Many of the usual characters from earlier in the series showed up in this one, with some fun twists. Mrs. Pollifax, elderly member of the local garden club and accomplished spy, was up to her usual brilliant mystery solving. I laughed out loud in the scene where she karate-chopped (one at a time) a whole group of bad guys trying to push their way into the safe haven she and her colleagues were sheltering in. Mrs. Pollifax is a trained operative that should not be messed with!

For “Peril of the Short Story,”  I listened to the short story, Hero, by Susan Hill. It’s a back-story to her Simon Serrailler series, and tells the story of an event that happened when Simon was a rookie cop. I really enjoyed it. No, I haven’t read the series yet, so I thought I’d start with this short story. I’ve read a number of other books by Susan Hill and like her writing very much, so I look forward to reading this series at some point.

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In the evenings this week, Hubby and I have been watching a Korean urban dark fantasy series called “Tale of the Nine-Tailed,” and it fits right in with “Peril of the Screen.” It is a story based on Korean folklore about  “mythical nine-tailed fox, or gumiho, Lee Yeon had to settle in the city many centuries ago. Able to transform into human form, he eradicates supernatural beings that threaten the mortal world. His real aim is to find the reincarnation of his lost first love.”  It’s been a great entertainment during a busy and stressful week.

Mid-August and Hunkered Down

Birdwatching and watching the birdwatchers. Plus, smoky air!

We are well into mid-August and the usual heat of summer has been replaced by the especially miserable record-breaking heat, drought, fire, and smoky air. We do all our errands in the early morning, occasionally picking up a cup of coffee at Starbucks and then hanging out at Fern Hill Wetlands watching the birds and the birdwatchers. Then, it’s home to hunker down as the heat of the day builds up and the air becomes worse. And I must add that the hunkering down is also part of our daily protection plan for my husband’s compromised immune system during this time of raging variants!

So, all that sounds pretty grim, but the nice thing about it all is that we are getting a lot of reading done, are enjoying watching our current K-drama during the day instead of after dinner, and are having fun trying out new recipes. Adjust and Adapt!

Woman Reading, by Henri Ottmann

Books read and enjoyed in the last few weeks:

A Song for Lonely Wolves, by Lee Evie. The first book in a new mystery/detective series that takes place during the Joseon Dynasty in Korean history. The main character is a talented young female detective during a period of time when women were not valued. A very interesting historical fiction mystery. I’m looking forward to reading on in the series when the new books come out.

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Notes on Grief is a short book by Chimamanga Ngozi Adichie about the death of her father during the middle of the Covid-19 lockdown last year. (He did not die of Covid.) It is a beautifully written account of his sudden death and the grief that followed, complicated by the restrictions of the pandemic. “I am writing about my father in the past tense, and I cannot believe I am writing about my father in the past tense.”  It is a deeply personal, yet completely universal, story, and I appreciated her honesty and her sharing her grief with us. I wrote down many quotes from this book because I know they will give me strength later on.   “Grief was the celebration of love, those who could feel real grief were lucky to have loved.”

My emotions are like a roller coaster these days, since my husband’s diagnosis. We have days that are “mostly normal” and days where waves of sadness hit us hard. So after reading Notes on Grief, I decided to return to the kind and gentle world of Miss Read’s Fairacre. I picked up the 15th volume in the series, Village Centenary, and read it through in a short few days. It was an absolute delight, and exactly what my soul needed. In this book, the village celebrates the 100th anniversary of the founding of the village school. Most of the residents of Fairacre went to the school, and the town comes together to honor the old school with a wonderful celebration at the end of the year. “There was no doubt about it, Fairacre School was the heart of our village, and memories of their own schooldays quickened the adults’ response to this tribute to its hundred years.”  What a lovely series, and this was one of my favorites of the ones I’ve read so far.

We are currently enjoying watching the South Korean drama, Bossam: Steal the Fate. It’s a highly entertaining series about a man of the Joseon Dynasty who mistakenly kidnaps the widowed daughter of the king. Bossam” was a “customary remarriage procedure” during that period of time. “A widow could not remarry. A single man or widower would kidnap the widow and marry her. Some of the kidnappings were agreed upon in advance and others were by force.” So a man could be hired to do the kidnapping, but things went awry with this particular job!  It is both humorous and serious, with wonderful acting, costuming, and filming — just a fun and very addictive historical drama.

Aside from reading and watching historical South Korean dramas, keeping my garden alive in the heat this summer has been a full-time job. I have to get it all watered before the heat builds up, so I start early and finish before noon. Fortunately, my zinnias like the heat!

 

 

Diagnosis

Last fall, my husband received a devastating diagnosis. He has Stage IV metastasized prostate cancer. Although this news packs a powerful punch, and there is no soft, kind way to share it, I need to let you know about this major change in my life, dear friends. I am sorry for the pain such news causes.

We have had time now to process the initial shock, to learn much more about what happened and is happening to his body, to begin the process of “getting everything in order,” and to start letting people know about it (although he’s a very private person). And in the middle of all the adjustments and doctor appointments, we are living our new life, which now has a one to four year time limit to it.

We have entered a new world — the world of cancer patients, survivors, caretakers, doctors, nurses, technicians, counselors. Cancer has become the kernel of truth within our daily lives now. Ever-present.

Cancer is a tremendous opportunity to have your face pressed right up against the glass of your mortality.” But what patients see through the glass is not a world outside cancer, but a world taken over by it—cancer reflected endlessly around them like a hall of mirrors.

~ from The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee

My husband describes the first months of his disease as “surreal.” Surreal because he felt mostly healthy and normal except for the side effects of his treatment medications, and some pain that came occasionally. His body has been tolerating his treatments well so the cancer has been controlled for the time being. That is slowly changing as this disease finds new ways to get around treatments, but the inevitable decline has not started, yet.

Cancer is an expansionist disease; it invades through tissues, sets up colonies in hostile landscapes, seeking “sanctuary” in one organ and then immigrating to another. It lives desperately, inventively, fiercely, territorially, cannily, and defensively—at times, as if teaching us how to survive. To confront cancer is to encounter a parallel species, one perhaps more adapted to survival than even we are.

~ from The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee

He entered this disease in excellent health, with excellent vital signs for his age, and no “co-morbidities,” using the term we’ve heard so often during this Covid-19 pandemic. He was, and still tries to be, active and fit. He feels his best when he is out on his bicycle. Genetic testing showed no genetic mutations that would have caused this to happen, and that, gratefully, are not something our children and my husband’s brothers need to worry about. It just happened. It is real…but it is not yet “real”. Surreal.

Right now, we are deeply grateful and profoundly sad. Grateful that we have time left to be together, to live life together. Grateful that we can face this disease side by side, as we have faced every other challenge in our 52 years together. Grateful for each day that he wakes up in the morning and is “mostly well.” At the same time, we are both profoundly sad, and the sadness comes in waves between otherwise “mostly normal” days.  We are seeing everything in life now through this new lens of impending loss, and are living each moment with crystal clarity. 

And from this vantage point, with deep feeling, I want to ask you to please cherish those you love. Please cherish yourself. Please cherish the daily-ness of your lives. Please cherish all the little things, because, as they say, those are truly the biggest and most important things. Live your life to its fullest, each day, because “today is all of time,” as my grandmother wrote in one of her poems. Today is all of time.

Bibliotherapy

My husband had a bone scan done today. That meant a trip to the hospital at 11:00 to get the infusion, and then back to the hospital at 2:00 to get the scan done. Since it’s a distance to the hospital from our home, rather than driving back and forth, we decided to make good use of the in-between time and go out to lunch and then to the bookstore. It was so wonderful to be in the bookstore again! Spending time at Powell’s is definitely bibiotherapy!