A Good Book Ruined By A Bit of Reality

I am a bookworm. As a child I always wanted to go to the library and didn't mind that if I read my newly selected books on the way home I might start to be a bit woozy from the wiggly New England roads. (Highways are much better for car reading.)

In times of stress (read 'medical disasters' among other things) I often turn to books as my personal form of avoidance. This was fine until my medical maladies kept interfering with my reading enjoyment. That would really suck.

During college, after thyroid cancer, with my small paperback book collection, I would avoid studying or read in bed something less enlightening than any required reading. At point, I remember I had a book I really was getting into, something about a young woman and her life.... and she needed a heart transplant or could die... That was enough for me. I had a cancer diagnosis and was trying to deal with the same issue - I could die. I remember throwing that book across the room and giving up on it. It hit too close to home for that time in my life.

It took several tries and several years before I could finally read it. But it was a good book ruined by a dose of the mortality of man. To this day I hate it when that happens.

Shortly after my breast cancer diagnosis, someone recommended to me that I read this book written by a breast cancer patient. For the life of me I can't find it now. But I did like it. The author was writing the story about her breast cancer journey. She was a cartoonist so she wrote it in cartoon format. From diagnosis through treatment, it talked about everything - scanxiety, chemo side effects, etc.

I really enjoyed reading it. Until I got to the part where she died.... And it was finished by her husband. I was very upset.

Since then, I have been very selective on what I read. Sometimes it seems that book and book and TV show after TV show are about someone's cancer journey - good stories ruined by a bit of reality.

I found a library book this week, Virtually Perfect by Paige Roberts, about a woman who was a chef and had a TV show on the Food Network until it all falls apart. The back cover blurb promised a story about her summer adventures as a chef of the very rich and who she reinvents herself. It looked interesting. I love books about chefs because they talk about food - which is something I could talk about and eat for ever and ever. At no point did it realize it included a secondary plot.

Twenty pages into a 300 page book there is a hint about her mother's health. And presto, the secondary plot is exposed as the story of the mother's breast cancer journey and how she tried to figure out how to tell the star, her only daughter, about her breast cancer. The second plot appeared and left throughout the novel.

At first I was a little annoyed as to how a good story was being ruined by the cancer story. But then I discovered it was handled extremely well. It showed the range of emotions of how do I tell, I need to tell her, but no I don't want to ruin her summer, to no don't tell her yet. A breast cancer story was there but it was a subplot. I could handle that.

This time I decided it was handled so well, and perhaps I have come further along emotionally, that I ended up enjoying it. And would recommend it.

Maybe i won't be so selective about books I read in the future. Cancer won't drive me away as often.

Its Not All Peaches And Roses

Life as an unhealthy person is not all peaches and roses.... Wednesday I wrote about Claire the amazing woman with CF who is full of energy and fun and talks about things we don't want to talk about - like dying. Anyway, she says she wants to wrote a book but not one about a 'happy sick person'. There are a lot of books out there about 'happy sick' people but reading them doesn't necessarily make you feel happy for them.

Honestly who can put a perky spin on being sick? One of the many downsides of life with chronic illnesses is that a little thing becomes a big thing. You have no idea.

Anyway, the world is papered with books about being cheerful, finding yourself, eating better, or walking/riding/hiking thousands of miles or something unimaginable to me.

After my first cancer diagnosis, I picked up your basic paperback fiction romance novel and found out it was about a woman who had some sort of heart defect and how she lived with it. I was not ready to read it and threw it across the room. Eventually a few years later I finished it and like it.

Later, after breast cancer I was older and more adventuresome in my reading. I read and liked 'Crazy Sexy Cancer' by Kris Carr. (I highly recommend that book and website and movie - hint, it's all about attitude). What I did like was the fact that her life was not all peaches and roses when she was diagnosed. She showed us how to cope and accept and develop the cancer attitude for making life good again - I mean what more can you ask for?

I have a bunch of other books that were noteworthy about life with cancer/other terminal/chronic ailment. If you search on the tag 'Books' on my blog, you might find them. I did read a graphic (cartoon) book that was about a woman with breast cancer (and I can't remember that title and I didn't put it in my blog). It ends when she goes to her last PET scan.... You get the idea.... I was very upset after reading that one.

I think somewhere out there is a happy medium of what life is like in the unhealthiness world in which some of us reside. I think Kris Carr is one who comes very close. But there are so many who miss the mark. Getting breast cancer and writing a book how our heroine starts wearing all pink, goes on long walks and ends up doing every Komen walk around the country, and finds God along the way, does nothing to help me feel better.

[I do not mean to offend anyone and their religion. Everyone believes differently. God did not give you your ailment. God is not going to cure your ailment. Talking or praying to God may help you feel better. However, he does not have the magic wand all of us sick people wish for.]

Anyway, we all do what we can to feel better after we find out we are not that healthy. Books about the not so rosy side of life post diagnosis can be very helpful. But the badly written ones, not so much

Reading about terminal cancer

This is not my favorite topic to read about and sometimes I find it very difficult to deal with. I stumbled across this article by Melinda Welsh on how she is dying in a yearish. She has terminal cancer and has been told it will be a year or so, give or take. She is still in treatment and has hopes of a longer time but knows it will be the end, in a yearish.

A yearish is how she translated what her doctors have told her. Its a vague time frame but it has a finality to it as well.

I am also reading a book, As Close As Sisters, about a woman with thyroid cancer, who had cancer cells drift into her lungs after treatment. She is nearing the end as well. I like the way it was worded 'cancer cells drifted' but not the resulting prognosis.

I have to be in the right mood to read about terminal cancer. As cancer metastases are the worst thing any cancer patient wants to hear about from their doctor. I never used to be able to read about cancer deaths. I blogged about books hitting too close to home last week.

The copy of "As Close As Sisters" I have is from the library. I took it out three weeks and two days ago and it is now overdue. It has taken me that long to open it up. I started it at the end of last week and put it down. I opened it again at the gym yesterday and read while on the bike and stepper. I get a solid hour of reading three times a week while at the gym.

I hope to get through it this week but if it gets too much for me, I will put it down for a few days.

Reading about terminal cancer makes me face the reality of what my medical history could become. It makes me face my fears on some levels. Will this make me handle a nasty diagnosis better if it ever happened to me? I don't know. But I'll give it a try.

Some books still hit too close to home

I have always been a bookworm (hiding under the blankets with a flashlight as a child). I read lots of different types of books. After my first cancer diagnosis I found I would have problems with books on young women with life changing medical issues. I would stop reading them, get upset, and put them down. Some I never finished reading.

I have thought I have had this under control from time to time through the years but then again my angst rears its lowly head. I got a pile of books out of the library last week and was looking forward to reading them. I got through one and put it down to move on to the next.

Red alert! I didn't catch the full plot when I read through the blurb in the library. A woman has to figure out how to tell her best friends that she is dying of breast cancer.

I resisted the urge to immaturely throw it across the room and put it down. It sounded like a great book except for that tiny little detail on an impending death from cancer.

I have pet peeves about book reading. For some reason I don't really like books written in the first person but sometimes I will read one. I'm not sure why the first person bugs me but it does.

I don't mind books with highs and lows, emotional tension, or twisting plots. I sometimes wonder what is the real difference between a romance novel and a military novel. Sometimes I think that its just the amounts of lovey dovey mixed in with car chases, shoot outs, or high drama and a few dead bodies.

But its the causes of death which get me. Bullets, poison, large animals don't bother me. But cancer gets me every time.
 
It would be nice if it would someday I could get a handle on that.

What book to read?

This question and response below appeared in today's Boston Globe in the Ask Amy column..
=================
Q. A few weeks ago I ran into an acquaintance who has been fighting breast cancer for the last year. We had a lovely conversation. She is very forthright about her diagnosis, and her spirit is admirable. I mentioned I was midway through a book that I knew she’d love. I promised to share it when I finished it.
As it turns out, the last quarter of the book is devoted to the protagonist’s own cancer diagnosis and his eventual death.
Should I still give it to her?
The book is very good. I know she’d appreciate how this character evolves, but I don’t want to be insensitive. Then again, if you eliminate books with people dying in them, the library shelves would be bare.
What do you think I should do?
Literally Unsure
A. You should give your friend a different book that you also love but does not stress your acquaintance with an intense dying scene.
===================

I think I disagree. I would still share the book but tell her it includes a cancer diagnosis.I would say something like "I thought this was a great book and think you would like it. But I wanted you to know someone is diagnosed with cancer in it." Let it be the person with cancer's decision.

Many people are unsure how to handle cancer and talk to people about it. By sharing a different book, they are avoiding the elephant in the room.

I really hate it when people try to shield me from something or someone that they think might upset me because of my health. Face it, my health is a big part of me and by shielding me, you aren't doing me any favors. And you might piss me off.

Its Movie Time!

Tonight is the premier of "Cancer: The Emperor of All Maladies" on PBS at 9 pm. The book was long and the movie actually is in three 2-hour parts airing through Wednesday night. I blogged about this a while back, I also read the book a couple of years ago. During the past week, I have also watched several trailers as well. Now the Tivo is set up to record it as it is on too late for me.

I am looking forward to this movie, or mini-series. But I do have a few reservations:

• It was a long book and while it was fairly entertaining, it was long. It wasn't a book to sit down and read on the beach. It took some thinking and digesting. I would read a few chapters and ponder them for a few days or a week and then read more.
• Although I reassured some in my other blog post, it does concern me that it is it is about cancer, which is not the most cheerful of topics. And sometimes I am just not in the mood to watch cancer-cancer-cancer.
• Sometimes I have problems watching other people going through their cancer journeys. I have found some stories to be too drama filled, or sad, or have me wondering 'what were these people thinking?' when they or a family member were diagnosed with cancer.
• If it is six hours of doctors talking about medical breakthroughs, I am not sure I will make it through. 
• There is no way I am going to stay up (with a cold, on a weeknight, three nights in a row) until 11 pm.

So it may take  me a few days or a week or so to watch the entire six hours. I do hope to watch it and enjoy it. I will probably blog about it again when I am done.

Young adults and cancer

I can relate to young adults with cancer. I wish the organizations that exist now existed in the early 1980s. But since there was not internet and we paid for long distance calls, it would probably have been by paper mail. And all the support groups were full of  'old people'.

I saw this article in a recent email from Cure Magazine (and I'll say it again, if you have cancer and do not read this, you are really missing out on a great resource) and of course I had to read it. Its a review for a new book by Dr. Anne Katz called "This Should Not Be Happening: Young Adults with Cancer".

In general I like the idea of this book. From what the review says it touches on many of the areas that are key for young adults with cancer - sexuality, fertility, and body image - but I have a concern.

There is no evidence given that she was ever a young adult with cancer. I am a firm believer in 'if you haven't walked the walk, you cannot talk the talk'. Now I am sure she wouldn't publish her medical history on her website, but it would be nice to know if she could relate from the first person point of view.

So I am going to put it on my reading list but am put off by this one little issue.

I'm reading

Earlier this year the movie, "The Fault In Our Stars" came out. Everyone raved about it. I wasn't sure. I never saw it. But I did sign up in the library to read it. I was something like 453'rd in line to read one of 20 copies.... I figured it would take a very long time.

And Tuesday I got the magic email that finally there was a copy available for me. Tuesday night I downloaded it and started reading. And reading. And reading. I read some more yesterday. And even more last night. Its only 200 pages but I have been busy so I haven't been able to sit down and read for a few hours.

I am most of the way through it at this point. I know what happens at the end essentially so you can't really spoil it for me but I do want to read the rest.

What do I like about it so much? Well the insights into life with cancer. I can relate to lots of them. You know all that stuff that gets donated to cancer patients? They call them Cancer Perks. You know everything from the free hats for bald patients to the autographed sports stuff from athletes.

I love the vocabulary introduced throughout it. Its kind of teenageresque but I can relate. The protagonist (fancy word this early in the day) had thyroid cancer which has made a nice colony in her lungs. If you haven't walked the walk, you may not get it.

But I digress. I plan on finishing it. I may reread it (I have two weeks and I think there are now less than 200 people on the waiting list for one of the 20 copies). And I want to do a little more research. I think the story is somewhat based on a real teenage girl and I want to find out more about the author to see how they managed to write with such insights into cancer land. I might even watch the movie sometime soon.

But in the meantime, I will keep reading and I recommend it for anyone in cancerland.

A very good book

As a cancer person, I am very skeptical of  'cancer' books. After thyroid cancer, it took me years before I could pick up a book about a young person with a life threatening disease or health condition. I remember throwing books that I had been enjoying across the room when I discovered that the story was about their health issue.

Then after breast cancer, I was eager to read my first graphic novel. I can't remember the title but it was about a woman with breast cancer's autobiography as her breast cancer returned and then she died...

So I am very skeptical to say the least.

Earlier this week a Bookbub email wandered into my inbox and offered me a deal on a new book about a woman dealing with breast cancer metastases. I hesitated. I closed the email. I thought about it. I went back later on and said its only $0.99 or maybe even $1.99 and bought it. Then I waited a couple days before reading it, still hesitant.

Then I read it. It was great. Its not long but worth the read. Its funny, sad, happy, depressing, optimistic, scary, compassionate, and a great read.

"In the Mirror" by Kaira Rouda. Go find it. Unfortunately the library doesn't have any more of her books so I might have to resort to the bookstore (eek)!

When diagnosed with cancer, get a puppy

I read a really good book last night. The whole thing. 83 pages in a 5"x 8" book so its a very quick read. 'Survival Lessons' by Alice Hoffman. Yes the famous writer Alice Hoffman.

She had breast cancer 15 years before she wrote the book which came out last year. In the introduction she tells us it is her personal path to healing on her own terms. The book then shares what she learned during the course of her treatment, looking back after all that time. I hope I am as smart then as she is now.

In addition to telling us to get a puppy during treatment, she is full of good advice including 'choose to plan ahead' and 'choose to dream'. These are two very important things we often forget when coping with a cancer diagnosis.

It made me think in a good way. I will return it to the library shortly so others can benefit from it. I might reread it before I return it and I will definitely reread it again in the future.

What happened to 'do no harm'?

This book sounds like it will give a pretty scary overview of medical treatment in the US. I will have to add it to the stack of intellectual books I am attempting to read 'The Emperor of All Maladies' and 'The Omnivores Dilemma' and others. But I really will read them all some day. 

Anyway back to the book, How We Do Harm: A Doctor Breaks Ranks About Being Sick in America. The title says it all. One example in the article talks about a woman who was treated with the standard of care for breast cancer in the early 1990s. Her treatment nearly killed her and she was hospitalized for nearly a year. And that was the standard of care. Her doctors probably knew about the side effects and yet prescribed it for her just as they probably did for many patients. After wards it was learned in clinical trials that the treatment probably did not good and may have done harm to her as well.

Medical practice in the US has a range of participants:

• FDA who approves treatments, medications, etc.
• Insurance companies who pay for these
• Patients who want the best available treatment
• Doctors who prescribe the treatments 

Then we add to the mix the availability of equal care to all and the patients who are willing to sue their insurance companies to get a new treatment covered. As you are aware I am not a fan of insurance companies but I find it silly for patients to sue for coverage of a treatment which is not FDA approved. I see this as interference in the medical system. (Yes, there really is a medical system in the US.) I am all for arguing with my insurance company (which I need to do this morning but that's another story) but I don't think I would sue them. Nor do I think I would want a treatment which is not FDA approved.
I am starting to digress here. Back to the subject of the book. It sounds pretty scary. I want my treatment to be FDA approved and I want it to be safe and effective. I do not want to be over treated and nor do I want to be under treated through unsafe medical treatments. I want my doctor to have my best interests at heart. 

Where I am treated, the hospital has set some relatively conservative protocols which give their doctors some leeway in treatment but provides a relatively high standard of care. I am comfortable with this. I do not want to be a guinea pig, I want to be healthy. I trust them. I don't want to end up in the next edition of this book.

Seeking optimism in books

I admit I am a life long book worm. I have been since I was a child sneaking a flashlight into bed to read after lights out. Nothing new there. I also married a book worm which means we go to bookstores and the library with regularity. And pay overdue fines. And get rid of books to the local used bookstore as well.

A few weeks ago I got a deal on a new Amex card through my Costco membership which has no annual fee and pays me cash back on purchases. I immediately ditched my old card with the rewards points. But being cheap, I wanted to use those old points and converted them into gift cards. Of course I went with Barnes & Noble so I could get a free bookstore trip. This gift card has been burning a hole in my pocket ever since. Finally yesterday I got there.

As I did my normal little route through the first floor and then through the second floor I realized I always take a trip through the health section and look for new books on cancer. This is new. Three years ago, I never went to the health section. Well maybe when no one was around, I would look for books on thyroid cancer. There never were any. Now I go look through all the books on the cancer shelves. Maybe there's a cure in one of them. When I go to the library, I always look through the new fiction books and then zip over to the new non-fiction and look for new cancer books as well.

Never mind that now a days books are considered to be behind the times and all their information out of date as the latest news is on the internet. I am still looking for that cure. Maybe someday there will be a book for me with that in it. I'll buy a million copies. Yesterday I ended up with two trashy novels and a book for my husband.