Category Archives: Cancer

May Check-in

A hill nearby covered in Crimson Clover…

I will start with an apology for not checking in sooner and for leaving this blog sitting too quietly for the last while. It has been an up and down month, a very emotional month, since my last post. The update on my husband, Byron, is that he has continued with his chemotherapy treatments with infusions every three weeks, and we have played the waiting game now for 9 weeks to see if the chemo is actually working to [temporarily] halt the progression of his cancer.  We had to wait until a certain period of time had passed to repeat his CT scan. The scan was done last Saturday, and we finally received the results yesterday. At this point in time, it is working. *Big sigh of relief here!*

So he will continue with his three-week cycle of infusions, and our lives are adjusting accordingly. The infusions are on Mondays. That first week is a challenge for him, with deep fatigue and other struggles. The second week, he feels better but not great. And the third week, he is almost back to “normal,” feeling well enough to work on projects (although his stamina is low), and have family come to visit. Then, the cycle is repeated …until it no longer works, or the side effects become too much to offset the benefits.

With this major change to our daily/weekly routines, plus the anxiety about whether or not this treatment is working, I simply couldn’t focus enough to read a book, and writing a post seemed too difficult. But, I am very thankful that we have a lovely grief counselor who is helping us through this roller coaster time, and she recommended a book that she thought I would enjoy. I downloaded it onto my Kindle directly after my appointment and read it in just a couple of days.

 The Last Bookshop in London: A Novel of World War II, by Madeline Martin, brought me back to my reading.

Inspired by the true World War II history of the few bookshops to survive the Blitz, The Last Bookshop in London is a timeless story of wartime loss, love and the enduring power of literature.

The Last Bookshop in London is an irresistible tale which showcases the transformative power of literacy, reminding us of the hope and sanctuary our neighborhood bookstores offer during the perilous trials of war and unrest.”
–Kim Michele Richardson, New York Times bestselling author of The Book Woman of Troublesome Creek

My counselor was right! I enjoyed it very much, and all of a sudden, my world seemed to right itself again!  She added one other recommendation for me:  she suggested I get myself over to Powell’s Bookstore for an hour of wandering.  Do you see why I love this counselor?

Back to my apology for leaving you without an update on our situation for so many weeks… I will try to check in with you here, dear blogging friends, at least once a month as we continue on our current health journey. And thank you so much for your care and concern.

Byron heading into Kaiser for his CT scan…

 

April Activities

Is it only April 7th today? It seems like April has already been a month long! How much Life can be packed into seven days, anyway? Well, I have to answer my own question with: A LOT!

April Activities thus far:

I have finished two books already in April. I read Round the Bend, by Nevil Shute, for my Classics Club Spin book. I will be reviewing it soon. Then, I listened to the audiobook version of When Breath Becomes Air, by Paul Kalanithi. It’s a beautifully written memoir of a young neurosurgeon’s battle with lung cancer. It made the waiting room time go much faster.

 

Our daughter came to spend time with us, which is always a delightful time for us. Once again, she helped out with our yard work and gardening, something she loves to do and which we appreciate so deeply.

Our daughter starting the spring clean-up the butterfly garden…

Byron underwent his second chemotherapy infusion, and in these first few days of April, has completely lost his hair. He is tolerating these chemo treatments every three weeks pretty well, with fatigue (and hair loss!) being the main side effects so far. During the times that he is feeling deep fatigue, we have been watching (and really enjoying) a YouTube channel called 4kSeoul. A very talented young man films his walks through the beautiful city of Seoul, South Korea. There is no narration, just sounds of the city surrounding you (especially if you put on your headphones to listen). Byron loves to see the architecture of the city as we walk through different neighborhoods. I am fascinated by the people we see, the energy of that city, and the historical structures we come across on these walks. It’s a fun way to experience a different place and a different culture.

On a walk in Namsan Park, in Seoul, South Korea…

So, hello to April! Life is full and busy for us right now, albeit in some ways we didn’t anticipate, and we are enjoying and appreciating the beauty of early Spring.  I hope you are enjoying your April, too!

March Busy-ness

March is turning out to be a very busy month for us. The calendar filled up quickly with both happy and some not-so-happy events for this month. We had a lovely visit from our daughter. She is trying to visit us about every three weeks now, which is so nice for us during this time. I am continuing with my Spanish language learning through the program, Duolingo.  I have included my Spanish practice as part of my early morning routine, and I just love it!  Another part of my morning routine is my outside walk. It’s been cold in the mornings, but just beautiful outside, so I am enjoying the outdoor time after what feels like a long, gray, too-much-time indoors kinda winter.

We are facing some serious changes in Byron’s cancer treatment. At the end of February, we learned that the treatment he’s been on since his diagnosis is no longer working. That leaves just one treatment possibility left, and that is chemotherapy. So this afternoon, he begins his first cycle of chemo. My word of the year, Courage, is in play for both of us as we face this new unknown territory. Our doctors and support teams have prepared us well, so now we’ll wait and see how well Byron tolerates the treatment and whether or not it will make a positive difference for his condition. This is “palliative chemo,” not “curative chemo,” but our goal, our hope, is that it will allow a better quality of life for now.

So with all this happening, the reading I have been doing is of the kind and gentle type. I am reading another of Miss Read’s Fairacre series, Changes at Fairacre, and it is like balm for my soul. I’m also enjoy reading children’s books, some in Spanish for helping with my language goals. And I read The Garden by the Sea, by Amanda James, which was a sweet romance book that takes place in Cornwall and includes a rather magical garden.

And, of course, with all of this packed into busy weeks, March is just flying by!  So, dear friends, I hope you are having a lovely, healthy, book-filled month!

After the Diagnosis Reading


A few weeks ago, I published a post about the books I have been reading since my husband’s diagnosis of cancer. I called it “My Other Reading” because I felt at the time that it was a separate reading journey for me. It was also a little easier than coming right out and saying that I am reading about disease, death, dying, end-of-life, and grief. But I have come to understand that it is not a separate reading journey for me. It is a very important pursuit of knowledge, and is taking central stage for much of my reading time these days. So I’m going to keep an ongoing list of this new journey, (like I do with my other reading journeys) and the books I am reading that help me understand and process what Byron and I are going through. I hope you will check back here occasionally to see where this search for knowledge and understanding is taking me.

I recognize that “end-of-life” is a topic that is uncomfortable for many. It is a very private journey, and our culture deems it to be something we just don’t talk about very much. But I make sense out what is happening in my life by reading, learning as much as I can, and then writing and talking over those ideas/learnings with my friends and loved ones. The conversations that have already been sparked, the book recommendations from friends and family, the kindnesses being shown to us by so many around us and in so many ways, are all deeply appreciated and help us with our processing. I also hope that in talking openly about our experience, it may help someone else process their own experiences with loss and grief.

And I am finding such interest, understanding, and solace in my reading about what we are going through right now. My reading is empowering me to do the best I can to be supportive, helpful, and understanding of Byron’s daily struggles with this disease. It is Byron’s illness, but our journey, together. And I want to do it well.

Red = click to read my review
Blue = Read but not reviewed yet

NON-FICTION:

FICTION:

 

 

 

A Busy Week


It’s been a busy week even though we are spending most of our time at home these days. We are trying to avoid exposure to Omicron because of Byron’s impaired immune system, and earlier in the week I found myself feeling quite blue about being so housebound. But then I started looking at how we are spending our at-home time and decided that we are actually spending our time very well and I have nothing to complain about! The photos above are of this busy week:

First of all, I read three books this week. Love in an English Garden, by Victoria Connelly, was a gentle read, a light romance with garden at the heart. Then, The 1619 Project: Born on the Water, by Nikole Hannah-Jones and Renee Watson, was a powerful and beautifully written and illustrated story about the first slaves brought to America in 1619. I highly recommend it!  And then, I listened to an audiobook of the first book in a new-to-me mystery series, Murder is Binding (a Booktown Mystery), by Lorna Barrett. It was fun.

We watched Shakespeare’s The Tragedy of Macbeth, starring Denzel Washington and Frances McDormand. It was an awesome production, and I thought it was very much like a film by Ingmar Bergman. That’s a high compliment!

I have been working each morning on my Spanish, using the app/program, Duolingo. I’m really enjoying the challenge, and am hoping to regain some of the Spanish I have lost over the years by not speaking it often enough.

And one last activity…Byron and I trapped and relocated a pesky squirrel that moved into our attic recently. This seems to happen almost every winter so we’ve become quite skilled at using our trap and taking these squirrels to a decent relocation spot.

Overall, a pretty interesting week. Feeling blue can definitely be part of this ongoing pandemic, but I am trying to make positive choices about how to spend my time  and emotional energy.

 

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…

November Reading, 2021

November has been a busy reading month for me. Here are the books I finished this month:

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And here are the books I’ve been reading in November that are taking longer to finish:

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.

 

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.