UB Libraries Book Group discussion

The Emperor of All Maladies is our March book and I am the facilitator. Our discussion will open on March 24th. I will be traveling back from Florida that day, so may not join in until the 25th. But feel free to get started without me.

I'm back. What a disappointment the cold weather is still here :-( It was beautiful in Florida!

Let's get started discussing The Emperor of All Maladies. For those who don't know, I am a breast cancer survivor of 9 years. I have wanted to read this book for a while and I did enjoy it.

While poking around on the web, I saw that Ken Burns is making a PBS documentary on this book, due out in 2015. Here is a link to the preview:

http://www.emperorofallmaladies.org/

I heard the author discuss his book a few years back, I think on Fresh Air or On Point on NPR. He emphasizes that it is a "biography" and not just a history. I find it interesting the way he characterizes cancer as sort of a living enemy to battle and how the battle needs to keep shifting as the cancer adapts to it and as new discoveries add more knowledge about it.

What did you like (or not) about this book? Do we have any other cancer survivors here that want to discuss their journey? I'm happy to, but nobody should feel pressured to do so. I imagine we all have a family member or friend who has had some type of cancer.

Did anyone read this book? Please say something :-)

I didn't read this book. I had a melanoma 40 years ago before it was common to live through that. I had an experimental procedure done and was very lucky. As a result, I was a bit skittish about reading this, but was looking forward to hearing what other people had to say about it. I am reading next month's book though, and hope to discuss that one!

Ladies! I tip my hat to you!

Like most, I've had many friends and family who've been diagnosed. I completely agree with the author-it is a living enemy. Even the language we use to describe it, battle, silent enemy, etc.- it's anthropomorphic in a way. I don't know why, maybe it helps us to make sense of it?

Like Rena, I was also skittish about this one.

I'd guess maybe we were all skittish about this one, if even just based on its thickness :-) But for those who read it, how do you feel now?

I was reading along pretty fast and very engaged, until it came to the last part about the developments in the laboratory. That may be connected to my longstanding dislike of chemistry. I liked the way the author wove real patients' stories into the history and treatment developments parts.

As a patient, I especially liked the way the author recognized that patients bring their own personality, character, drive, whatever you want to call it to the fight against cancer. In other words, he wasn't totally wedded to science all the time. Almost every argument I have with my oncologist is about my quality of life versus the percentages. For an example, I tried going on a certain follow-up medicine that is supposed to be taken for 5 years after the breast cancer patient is in menopause to prevent recurrence. But it made me dizzy and achy, so I refused to take it. My doc was not happy because that increased my odds of not getting the cancer back. But I knew other women who were on it and had a recurrence anyway and others that were not on it and did not. So real life does not always do what the science says it should.

I thought it was interesting that the author mentioned Roswell Park quite often (at least early on) in terms of the person and the institution. Yet he never really fleshed out any contributions made at Roswell other than briefly in passing. I can't imagine the amount of research material he must have amassed. And how he sifted it all down and put it together the way he did amazed me!

This has been on my "to read" list for awhile now but due to its size I knew I wouldn't get to it this month. I'm still interested in the conversation and appreciate you survivors sharing a bit of your stories.

At the PSS meeting yesterday there were a few people speaking to promote UB's Relay for Life on April 11. They asked who in the room had had cancer themselves or had family or friends with cancer and it looked like nearly everyone raised their hands.

Amy, I agree with you that the anthropomorphic language we use helps us make sense of it but I really think it also helps to frame it in a way where we (cancer patients, family, friends) can feel assertive and action-oriented in how we engage with cancer; help to cope with the fear and gear up for the struggle it takes to beat it into submission. And Ellen, what you say about real life v. science is right on the nose. I have a close friend who was treated for breast cancer while we were in our 30s and the last 15 years of her responses to treatment, recurrence and medication have been "atypical". Seems like no one is really typical. Thanks all for sharing!

Sorry for the lengthy comments from a non-reader of the book! :)

Hi, I just joint this group last week, mostly because I was interested to read about comments, reactions from others to this book. It is a very informative book but very long. It took me many months to finish it but I'm glad I did. And I wasn't even reading but listening to its recording from Audible.com. That definitely helped me to finish it though.

I agree the many personal stories of the scientists/doctors and patients made the book a lot more interesting. Although I don't know anyone close to me who have died or have been diagnosed with cancer, what drew me to this book was all the random tips and articles on diet and nutrition flying around from forwarded emails or online searches. Many of them contradict one another. Recently I also read The China Study by Dr. Campbell. Can cancer prevention be really that simple as to stick to whole fruit and plant diet? If it's this simple, why hasn't it be more popular? It certainly explains why cancer is so prevalent now a days? I suppose all these made me want to know more about cancer as a disease and its history, progress in recent history. This book certainly didn't disappoint me in this regard. Even though I can't re-iterate all the medical terms and facts the book gave, nevertheless I don't feel it was a waste of time to have listened through it in its entirety. And hopefully I won't feel as lost or confused when I come across other papers on various cancer diseases.

Sorry for the late reply, life has been a little crazy lately. I am about half way throug the book. I was hoping to be further along by now.
I for one am very happy you, Ellen, and Rena, were able to beat the enemy. You ladies are 2 of my favorite people.
I am enjoying the book and am hoping for a "happy" ending but not sure there is one in the book.
I am at the part where they are talking about the blood/brain barrier and how frustrating/scary it is.
My brother-in-law was just diagnosed with melanoma about 2 months ago. He is getting follow up treatment to make sure ther is no reoccurence of the cancer they removed. Interestingly, they are giving him interferon A, which boosts the immune system and I believe, can get past that barrier.
The book is really helping me to understand what is happening with his treatment. Still tough and scary but with God's help he will come through this and live a happy and long life.
On the topic of the authors style, etc., I think he is very good at highlighting and explaining the timeline of this struggle. I admit, it takes a little to refocus and get back into the groove once I've put the book down.
All in all, I think it is a good read. I am looking forward to see if he mentions the dna genetic aspect of the more individualized fight with cancer.

I admit I was disappointed at the short shrift the author gave to the genetic testing aspect of getting/treating cancer. At least IMHO he did not spend much time on it. That may be due to the proprietary nature of the commercial (and rather monopolized) genetic testing sector at present.

All the best to your brother-in-law, Becky. One's life (and that of his/her family and friends) is really turned upside down with the cancer diagnosis. Letting go and realizing what is in and out (lots!) of one's own control can be the hardest part.

Thanks, Ellen. Good advice. With my husband's MS, we've had to practice that quite often. It will be a new experience for my brother-in-law and his family. they have always been very active. My brother-in-law's favorite expression has been, " I'll rest when I'm dead. " They go, go, go. Perhaps this is to teach them patience. :-)
Ah well, we hear quite a bit about the genetic breakthroughs and potential right here at UB. Quite often on MyUb and the Reporter.