Letters From Cancerland: Big Books
The infusion regimen I follow for Kyprolis (carfilzomib) is two consecutive days a week, three consecutive weeks in a round, rest one week, repeat. Each session lasts two hours, more or less, so in any complete round of treatment I spend 12 or more hours of enforced downtime, sitting in a chair while chemicals drip into my body.
What to do, what to do?
I don’t carry a tablet. I don’t have a smart phone, just a way retro flip phone from which I text only. I don’t knit, crochet, cross stitch, or quilt. In short, there are no handcrafts to while away the hours.
Oh, and I don’t watch television in any form.
But I do read. Voraciously and quickly. I read books, not e-readers in any form. I know: e-readers are so much more convenient, portable, blah blah blah. I don’t care for the format. I am hopelessly wedded to tangible books I can hold in my hand.
So I started out the Kyprolis adventure schlepping books to and from the clinic. The issue that I kept running into was coming up with enough books to last me two hours, then coming up with enough material the next day to cover another two hours.
I got tired of carrying multiple books in my bag. I got tired of sorting through my library books and trying to estimate how long a book would last. Was I close to the end and had to bring a second book?
After three rounds, the answer was stunningly obvious. Read Big Books.
You know what a Big Book is. A Big Book is one of those mighty tomes that somewhere along the line someone, maybe yourself in a younger incarnation, said you must read to be well-rounded. The Decline and Fall of the Roman Empire. War and Peace. Ulysses (James Joyce) followed by The Odyssey (Homer). The complete works of William Shakespeare, including his sonnets. The Tale of Genji. The Magic Mountain.
Those kind of books.
For my first Big Book, I chose War and Peace for the sole reason that I had bought a paperback edition of it in high school and never read it. My original copy is long gone, although for the decades I owned it, it crisscrossed the United States as I moved around and had several thousand miles under its belt. I never read it during those years, mind you. I just thought about reading it. Even in tiny print (I think it was printed in 6 point type), it was a hefty book. The paperback I bought this time around was in 10 point, I believe, but still a hefty book.
Isn’t that the whole point of a Big Book? To be hefty?
War and Peace took approximately five rounds of Kyprolis to read. (My one rule of chemo reading is that I not read the Big Book outside of my infusion time.) I managed to end it right at the end of Round 8, timing I could not have planned if I tried.
So what did I think of War and Peace forty-plus years after I first meant to read it?
It wasn’t a waste of time. (Trust me, I would have abandoned it if I felt that way. I may be geeky with my Big Book reads, but I’m not stupid.) I now know that Pierre and Natasha end up happily married, which made me glad for them both. And I know a lot more about what Tolstoy thought of Napoleon and his ill-fated invasion of Russia than I ever really needed to know.
I saw a cartoon, “Abridged Editions,” about a week after finishing War and Peace, which summed it up in two sentences. “Everyone is sad. It snows a lot.” That’s not a bad summary, Natasha and Pierre excepted.
The next choice, which I started on Day 1 of Round 9, my current round, was easy. Moby-Dick, the Great American Novel. I last read Moby-Dick in freshman humanities at college. In short, also a long time ago. At age 18, I read it as a young adult. I strongly suspect that at age 60, I will read it from an entirely different perspective. Fifteen chapters into it already, this has proven true. Among other things, I am a more patient reader (albeit still fast) than I was at 18.
A close friend who is currently reading and listening to Moby-Dick lent me The Whale, a nonfiction work on whales, whaling, Moby-Dick, Melville, and the wonders of the oceans. My friend meant it as sort of a prelude to my beginning Moby-Dick. After finishing that book, I want to go whale watching. By the time I finish Moby-Dick, I will probably want to go whaling.
Call me Ishmael.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Any non-fiction? A David McCullough book will get you through a cycle or two. My infusion lab stocks magazines like People, Redbook, etc., so when I get through with my mags from home, I take my longer form ones like Smithsonian for patients like us who have longer periods in the chair.
Yes, reading books while on the Kyprolis regimen. I take the WSJ book review and travel/food sections which can last 2 days. Then library books, paper pages between covers, not ebooks. I use a book mark a patient gave me, made from a Persian rug. I think of her always when I open the book. I'm surprised many patients aren't reading -- I value the quiet time, forced time to sit and enjoy a book. One of the "perks" of myeloma treatment! Suzanne Gay
I'm with you. I do not care much for e-books. Real books feel different and it is much easier to find a part you read and want to recheck for some reason. I did not spend much time in a chemo chair when I did Velcade but I spent plenty of time in the waiting room. That is where I read. I even met another patient who liked to read books by one of the authors I was reading. We became aquaintances and talked when we were waiting.
April, I highly recommend The Historian by Elizabeth Kostova. You will become so involved that you won't even be aware of when the infusion begins and ends. Best Wishes
Hi April,
Is 400 pages long enough? Michael Chabon's The Yiddish Policeman's Union is a hoot! Wishing you well.
Thanks for the literary column, April, and am glad you are finding time to read the classical books you like, at the treatment centre. A few years ago I bought a 'Kobo' tablet, which was pre-loaded with 100 great classics. I did read 'Moby Dick' at that time, since whale watching is something I have really enjoyed. ever since high school, when my biology class went on a field trip to the west coast of Vancouver Island, and we spotted grey whales spouting offshore. I am fascinated with those intelligent mammals. So yesterday I looked for the 'Kobo' here to read some of that classic again, but am still looking for it!
I think that since we grew up in an era before computers were widespread, and even TV was just coming into household use, there is a tendency for us to like a 'real' printed book. Sometimes the illustrations are beautiful too, which gets us into the visual world more. We like watching movies, nature documentaries and the news on TV though.
Hi, April!
Love your spirit and as a fellow reader, I love the big books idea. Oh, yes, another whale book that is great: War of the Whales.
Read on! Reading gets us through a lot of "stuff."
Hello April, Thank you for another timely article. I was on the Kyprolis regimen for almost a year. I often felt like a prisoner during the twice weekly sessions. I also add another element. For me, time changes during infusions. I notice a dreamy quality on many days. I too enjoy reading and using real books. I have not tried the "Big Books," but recently read 'Hundred Years of Solitude', which required notes to keep the characters straight.
I also enjoy non-fiction where I can read a few chapters each session. My recent favorite, 'Gold Mountain' by Lisa See. I also take the altered time sense by writing short poems.
The important component is that you addressed a common challenge for regularly scheduled infusion times: What to do?
Maureen
Hi April - Great article, and I appreciate your reading recommendations. You and my mother have a lot in common. She too is a voracious reader and sends me all of her books. The problem is I have tried to transition to my Kindle, but I but I feel guilty not reading all these stacks of books from my mother. My compromise is that I read mom's books at home but the books on the Kindle when I travel. This sometimes means I am reading two books at once. My husband gets his elotuzumab by infusion that seems to take all day, which gives us both lots of time to read.
I am not currently doing any infusion treatments, but since I've been diagnosed with multiple myeloma (August 2012), I finally read Jean Auel's Earth's Children series, which starts with Clan of the Cave Bear. All the books are "big books" and total over 4000 pages! The series is really good! I also appreciate a "real" book; no electronic books for me!
Greetings from Florida, and thanks for a great column!
When I was young, I read many classics and I enjoyed reading theater works also. Once you get used to that different type of narrative structure, and make sure you know who the characters are by checking the initial list carefully, it can be very soothing. I found Chekhov, for instance, quite intriguing. Ibsen, heavy duty Strindberg, interesting Tennessee Williams (The Glass Menagerie), Cocteau, they are all enriching, while not as daunting as Shakespeare.
I read so many novels, Russian, French, British, American, German and Italian.
Then one day, after reading John Fowler’s The French Lieutenant Woman, I stopped. This is an intriguing story taking place in the 19th century with the sexuality of the characters revealed through deep psychological aspects. At about two thirds of the story, though, the author starts playing with the reader’s mind. He goes: “Well, what if this character, instead of going to XXX’s house, did something completely different?” And he traces a different path for the events. Then he asks the reader to choose the preferred version, but of course both of them are absolutely convincing. What he did must have bothered me, because after that book, I refused to get so involved in fictional stories and chose some without too much psychology!
Before my daughter was born, my husband and I read the marvelous “The Clan of the Cave Bear” (I see that Elisabeth M also mentions it!) by Jean M. Auel, and we named our girl Ayla like the main character of this story, which takes place in prehistory. It starts with a massive earthquake which leaves five-year old Ayla, a CroMagnon (i.e., human), almost dead, and then rescued by a group of Neanderthals who were behind her both with development and physical beauty. The things that can happen in prehistory, you would hardly believe! And to this day, when my husband and I get involved in a situation with people we feel are different from us, I would say to him: “Uhm, Ned. We are not clan!”
My favorite novel ever has been Michael Bulgakov’s “The Master and Margarita”. I love the surrealism that permeates the story, from the early appearance of the devil, who comes to disrupt life in Communist Moscow, to the finale with Margarita flying. I loved the complexity of the narrative structure, which includes a visitation of Jesus and Pilates’s episode that breaks the main story.
Other favorites that I would warmly recommend:
Franz Kafka “The Trial”, “The Castle” and “The Metamorphosis”
Herman Hesse “Narcissus and Goldmund” and “Siddharta”
Victor Hugo “Les Miserables”
Carlo Levi “Christ Stopped at Eboli”(Very poor peasant Italy in the Thirties)
Elsa Morante “History - a Novel”(Rome in the Second World war)
Daphne Du Maurier “Rebecca”
Margaret Mitchell “Gone With The Wind”
Oscar Wilde “The Picture of Dorian Gray”
Emily Bronte “Wuthering Heights”
W. Somerset Maugham “The Razors’ Edge”
Guy de Maupassant “Bel- Ami”
I hope you will want to try to read a book or two from this list. If you do, let me know if you liked them!
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