Bests & Worsts Reviews from Amazon

Let's get this out of the way first; I also have Multiple Myeloma. I'm a young patient, not "typical" for MM, female, and I work in healthcare as a Registered Nurse. I read this partly because I've long respected his work, plus I went to college in South Dakota, so I'm familiar with a lot of the same places in the midwest that he is. This book was disappointing. Why? I felt it lacked depth, authenticity and real vulnerability. Is the writing good? Yes, but I wanted more from a person who is facing the reality of death. This book disappointed me because 80% of the book felt like a shrine to himself - he spent way too many pages bragging about how great his life is, name-dropped constantly, and made sure we were clear that he cant believe this happened to HIM. Well I know exactly how that feels. What does Tom not know? He doesnt know what it feels like to be the primary breadwinner and be diagnosed with this disease in your 40s. He doesnt know what it's like to constantly worry about the side effects of chemo & how much work you'll miss & whether you'll be able to keep your job - knowing you cant realistically get another. He doesnt know what it feels like to wonder if you'll see your children graduate high school, much less if you can hang on to the house throughout treatment. He doesnt know what it feels like to be denied disability insurance (not SSDI). He didnt have to rely on GoFundMe because his sick and vacation time ran out the first two weeks of treatment, and getting a transplant would mean missing 3-4 months of work. He didnt have to worry about whether he'd be able to return to work after a transplant working long shifts with chemo-brain. He also probably didnt spend months pouring over PubMed articles himself, hoping he was interpreting the data correctly, trying to decipher what really is the best course of treatment. I could name about a million things that made me realize that the only thing I have in common with Tom is the disease. So go ahead and read this book if you want to know what it feels like to be rich and sick. He'll tell you - well then you fly to specialists all around the country because you can, and you ask them similar questions and compare their answers - which I'm sure they loved, but I get it. You should ask questions. Some of the stuff made me laugh it was so out-of-touch with what most of us in middle-class will face when/if we get cancer. He devoted a whole 2-3 sentences to prayer - enough to basically say, he was never really into it. Speaking for myself only, if getting diagnosed with an "incurable cancer" doesnt make you question your beliefs and turn to God for help, what will? So go ahead and read the book if you want to learn about all kinds of options 99% of us dont have. For anyone in my shoes, here's my advice: Seek out a Multiple Myeloma Specialist - not a general Hematologist/Oncologist. This is a very patient-specific disease, and you NEED a specialist. Find a way. Have them consult with your Dr if you arent as lucky as me and dont live near a MM specialist. ADVOCATE for yourself. Talk to your team. Be vigilant about doing what you can to help yourself and dont expect your team to do everything for you. Get support through family/friends - you're going to need it. This is not a time to be isolated. Hope they catch it early like they did for me - that is often the difference - I was lucky. I was only stage 1. I have grown to love my team, and trust them, but that didnt happen overnight. I am not naive about the challenges in healthcare. Hope you have really good insurance. One thing that my Dr also told me recently was helpful - even though I went through hell during parts of my treatment, I quickly got better physically. The mental/psychological challenges were, and are, harder. My Dr said that's because I'm a younger patient. For older patients - the ones who usually get MM - the physical challenges are harder. I'm very thankful to be doing really well now. I've got a lot of credit card debt I didnt have before, but I'm alive!