Lindy Bruzzone

I was glad to get the 2019 revised edition since things in the field are happening so fast.

She’s lucky that she has so many family members alive and she’s lucky that she was able to discover so much about her ancestors and that they’re really interesting people and a lot of diversity. There is a LOT of family history. It makes for dense reading even though I found it interesting.

I felt a lot of anger and a lot of sadness on the author’s behalf, and also a lot of my own grief.

No matter how I felt about the author in various ways, her account makes it clear for me why she is the way she is and why she has the beliefs she does. She has also contributed greatly to helping others. She and her husband founded Lynch Syndrome International and she’s done a lot of other work on behalf of others.

It finally dawned on me (after so many decades) that the lack of talking was not just from my parents’ weird secretive and absent communication style. I had never really considered the eugenics movement influencing older relatives and it now makes at least a slight bit of sense when my uncle, a physician and surgeon, would not use the word cancer but called it The Big C, even into the late 1960s and definitely in the mid-60s.

I thought this would be mostly about how Lynch Syndrome has impacted the author and her relatives but it’s so much more than that. It’s an autobiography, a family biography, a social-culture-feminist book, and even though her contention is that a lot of how she and relatives lived their lives was because of knowing they were in a cancer family, for most of the book there was a lot less about Lynch than what I’d expected. As for the parts pertaining to LS, if I wasn’t already terrified enough that I’ve never had a proper Lynch team or actual real genetic counseling (since they admitted they didn’t know the meaning of my results in 2006) or possibly losing all proper health care for the rest of my life, reading all this just increased my anxiety. I’ve been incredibly lucky so far. I’m hoping that the Delta variant of covid will not cause my next round of screenings to be cancelled/postponed.

The author is an incredibly driven person. She finally described her schedule and I got it but I had wondered when she spent time with her children.

I enjoyed the quotes that were at the start of each chapter.

I found myself particularly interested I the San Quentin part and the various San Francisco Bay Area & California parts including the notorious crimes mentioned because I remembered them.

When I first learned about this book (at one of my LS groups) I noticed that more than one person was saying it wasn’t well written. I don’t exactly agree. It could have used better editing and it’s a straightforward account but I found it engaging enough, especially true the further that I got into the book. Its strength might not be in the writing though the writing is fine but the storytelling is engaging and I was riveted much of the time.

The author is just about a year older than I am and for many years of her life she lived in California including times in the San Francisco Bay Area. I loved recognizing places I knew or knew about and having some shared memories just because we grew up at around the same time.

Quotes:

“If anyone wants to escape from where they are, there is always a way.”

“Everyone, at some point in their life, experiences loss. Each of us handles it differently. Some of us are blessed with resilience, bouncing back, while others remain frozen in place and are not capable of movement in any direction. And, sometimes, those we love are gone from us, long before they die.”

“Lynch Syndrome is a subset of hereditary nonpolyposis colorectal cancer (HNPCC). It places individuals at high risk for contracting many cancers, including colorectal cancer, endometrial cancers, ovarian cancer, and other cancers of the gastric system, breast, pancreas, biliary tract, ureter and renal pelvis, bladder, thyroid, small intestine, and brain (usually glioblastoma), including keratoacanthomas, as seen in the Muir-Torre Syndrome variant.” (Page 293)

Regarding Lynch, I 100% agree with the author that in some cases it’s appropriate to test people under 18 years of age and that it should be up to the parents (and I’ll add the child) and not genetic counselors or protocol. Testing was not available until I was well into adulthood but I would have chosen it for myself when I was 11 or 12.

If anything read this for how perfectly the author makes end of life plans with regards to people with whom she has/had relationships, pages 272-273. Yes!

The author and I have different mutations. When I was tested in 2006 they could test for only the mutations in 3 genes. MHL1, MSH2, and MSH6. Now they also know about PMS2 and EPCAM.

I very much value the honest depictions of cancer and this book does that, describing candidly what it can be like to have cancer and cancer treatments and what it can be like to live after having had cancer. Most of the books & movies I was exposed to when young glamorized cancer or minimized the pain and suffering, but eventually there were some more realistic narratives and I was so appreciative of them and continue to be thankful for them.

I also liked the focus on the empowerment that comes with knowledge. With Lynch in particular, once diagnosed, people have access to additional screenings and surgeries/procedures that can be lifesaving and can avoid cancer or at least be more likely to catch it in its early more treatable stages.

I’m grateful that LS biographies are being written & published. I’ve also read Daughter of Family G: A Memoir of Cancer Genes, Love and Fate by Ami McKay. The way I figure it the more the better. I think books like this can be supportive for readers.

I think this is an important book. I highly recommend it to people diagnosed with Lynch Syndrome, people who’ve had a lot of cancers in their families or have had cancer themselves, people who have any condition/disease that seems to run in their families, and readers who enjoy biographies, especially family biographies, and for readers who enjoy history too.… (plus d'informations)