Monday, February 29, 2016

Mets Monday - How NOT to visit a sick friend

This month, I have been fortunate enough to have had visits from my oldest dearest friend, as well as my sister. Many of you canceristas and metsters are lucky enough to have loved ones who visit.

But tell me, do they always behave the way the way you wish they would? Of course their intentions might be good, but their thoughtlessness sometimes shows.

Insensitive behavior happens most often when we don't appear sick. When we look normal, people forget our illness, especially those of us with cancer, which so many equate with hair loss.  If you aren't bedridden and bald, you can't be unwell, right?


Sick, even real, debilitating sick, can be quiet, invisible and subtle.

In coming up with a way to keep my vivacious friend busy and do an activity together, I came up with this video.  Not only was it a fun activity for friends to do, it will hopefully remind those who visit a chronically ill person what to remember during their time together.  No matter the illness, the best way to be supportive is to take your cue from the sick person, and don't put pressure on them ...about anything.

There are many more "what not to do" items that we missed, and we wanted the video short, so please feel free to add your peeve in the comments, or on facebook.

As you can see, we both missed our calling as actors.  I really do think a designer should consider sending me an Oscar-worthy dress, shoes and jewelry, don't you?

Enjoy our silliness!

Sunday, February 21, 2016

Chain of Kindness

It’s February in Sacramento.  California snow has been falling – blossoms from neighborhood fruit trees dusting the ground with white, or pink, depending on the fruit. This is the reason so many of us put up with California’s high prices, unresponsive government, and unrelenting taxes – this glorious, glorious weather.  While much of the country is still buried in snow, shivering, our Sacramento spring has arrived.  Last week the weather was in the upper 70s. People are out gardening, pulling weeds away from the daffodils.  The urge to plant new flowers overwhelms even me, a woman with the blackest of thumbs. The weather will chill again, temporarily, but springtime weather has undeniably begun.

Last week, my sister was visiting.  I’d pulled the ultimate bait and switch on her, a con worthy of Slippin’ Jimmy. She’d made plans to come see me months ago when I was struggling with severe abdominal pain, the knowledge of cancer spreading through my abdomen and the thought that this time, it might be unstoppable. This new growth had jumped out of my liver and was seeding everywhere, including spots in my lungs. It had the potential to be the beginning of the end, we all thought so.  By the time her plane pulled into the airport, I’d had 4 infusions of my 9th treatment regimen, Kadcyla aka TDM1, and was in remission, my second. It happened with breathtaking speed, from remission to cancer explosion to remission again. This is the easiest chemo I’d ever done, the pain is much better, energy level higher, and I’m able to think about the near future without worry again. Even my chemo brain seems to be recovering; concentration improved. I can read again and do puzzles that I haven’t been able to focus on for years.  I have some pain, always now, but it is being managed well. My only new side effect is neuropathy - numb fingers and toes. A very small price to pay.

My sister and I had a nice, girlish visit. A visit to a salon, shopping and lunch at Nordstrom.  For me, a very full day, lots of walking. We came home and were chatting in my living room, both of us idly looking out my picture window to the street. Part of my view is blocked by a neighbor’s fence which encloses his front yard, built after he moved in. I remember when I could look out the window and see the whole of my pretty, post-war curvy street with its small, neat little homes, wave to my neighbors from the porch, see the blooming trees and flowers beyond. With that fence, I’m now cut off from half the neighborhood, my street starting right in front of my house, the light diminished and the house darker.

Because of the fence, I heard laughing before I saw them. A car’s hood silently appeared, then four young men and a girl pushing a vehicle of the kind I had driven for decades: nondescript, old. A beater, we called it, the color the same rusty red as the leftover blood on a cotton ball after a poke. My street is on a slight incline so they were pushing uphill, two boy’s backs on the car’s trunk, wiry leg muscles straining, another positioned on the right side of the car, pushing from the open door. Inside, predictably, a girl steering, and beside her, another male. The boys, as I call them, were really young men. All had long hair, short sleeves, and could have been anywhere from 17 to 27 for all I could tell. They were laughing despite the circumstances, weather making it impossible to be unhappy, even in the face of lost transportation. I watched a minute and paid silent homage to all of my old beaters who had to be pushed off the road after some mysterious piece inside stopped working.  How many times had I been that girl, steering, as others pushed me out of danger?  Thank goodness those days are over. I turned away.

My sister spoke, in a slightly urgent voice.  “They’re thirsty, Ann.”

“What?”  I said, confused.  “How do you know?”

“They just are.”

“Did you hear them say something?”  I looked at her.  I was confused, both by the urgency and certainty in her voice.

“It’s hot.”  She repeated. “They’re thirsty.”


I went to the kitchen.  I had four bottles of water left, sitting on the floor near the fridge, still inside the protective wrapper that was slightly dusty from dog hair.   (If you come to my house and do not see animal hair, you know I have reached the end. And, my husband as well.)   I ripped off the plastic overlay, grabbed the (clean) bottles and walked outside.  “Hey, are you guys thirsty?”  They looked at me, this skinny, bare-footed, frizzy-haired, gray-haired old lady and determined I wasn’t coming out with a broom to scream, “You kids, get offa my lawn!”  One smiled and answered, “Kinda, yeah.” So I handed a water bottle to each, and apologized for being one short.  The boy and girl in the front thanked me, said they didn’t mind sharing.  Young love.  I wished them luck and went back inside.

My sister and I were not the only people who’d seen these kids.  Across the street another neighbor had been out washing his car, a weekly chore for him even in the drought.  (In case the water cops are reading this, he uses a bucket and never allows water to run.)  He’d seen these kids coming too and like me, ignored them as they struggled by.  Finishing their swigs of water, these kids started pushing again, but this time the neighbor decided to help too.  He centered himself on the back of the car and gave a mighty heave.  His powerful muscles, along with the boys’ skinny ones, did the trick.  The car began rolling easily up the hill.  Cheers erupted.

My sister, by sensing their needs, had started a tiny chain of kindness. Had she not told me that she felt they were thirsty, I definitely wouldn’t have considered it. My neighbor also would not have helped without seeing me come out and bring water; they had already passed him by the time I got outside.  There is a saying, “When a butterfly flaps its wings in one part of the world it can cause a hurricane in another part of the world." The same can be true for these random acts of kindness. Who knows when these kids themselves may do something kind for somebody they don’t know?

In this instance, the butterfly is my sister. There are so many other butterflies out there, we should be beset by hurricanes. I’ve been the recipient of more kindnesses than I can count, and to this day, continue to be blessed by the generosity of others.  From simple things, like starting an Amazon shopping trip from my blog, to cards, to gifts sent, it’s opened my eyes to the world of human generosity that somehow, I had totally missed until I got sick.

I recently read Sue Klebold’s book, A Mother’s Reckoning.  You will remember her as the mother of one of the Columbine shooters.  Like most of the country, I was horrified by Columbine, and then fascinated to the point where I have read every document about it.  Much of what you think you know about Columbine has turned out to be bad reporting that has become folklore. (For the definitive book on Columbine, read David Cullen’s work.)   Early on, as this tragic story unfolded, I, as so many others, wondered how a mother could miss signs of her child intending mass murder – and surely there were signs, right?   Age, maturity, and cancer taught me better.   I know deeply now that some things are inexplicable and unknowable - like the reasons for cancer, like the hidden thoughts of a suicidal teenager.

What strikes me in her book is how many others didn’t make those kinds of snap judgments that I did. Sue writes of receiving many thousands of letters with words of support. These were people who were able to give: give her the benefit of the doubt, give her support at the worst time of her life, maybe even our country’s life, even when the media was attacking her and we were all afraid for our children.

People like my sister, people like all who have reached out to me in one way or another, to try to comfort and help, are links in this chain of kindness. You are the wings of the butterfly, spreading the breeze of love through the world. It is the obligation of the rest of us, whose first nature may not be to reach out, to learn pass along the gifts of understanding and kindness we’ve been given, and to let the chain become unbroken.  It may start with a bottle of water and a nudge, but that’s a good enough start.

I challenge those of you reading this – as I challenge myself – to do a kind thing for somebody else this week.  And notice when somebody is kind to you - when somebody allows you to squeeze in on a busy street, when you drop something and somebody picks it up for you.  All of these small random acts of kindness truly do have an impact on the experience and lives of others.  Report back here what you did, what was done for you,  if you like.

Sunday, February 7, 2016

How the Cancer Moonshot will help Metastatic Breast Cancer

There has been conversation on twitter from women with metastatic breast cancer, upset because they believe the Federal Government's "cancer moonshot" ignores women with our disease.  This puzzled me.  When I read the bullet points of what the Feds hope to do I don't see how metastatic cancer patients cannot benefit.  This Moonshot is, of course, meant to be inclusive of all cancers, but in my view, Metastatic cancer is implied all over the place, including breast.

That's the problems with twitter, we couldn't explain each other's position or ideas in 140 charactors. So I will share mine here.

How does the moonshot help metastatic breast cancer patients?

First, you must read the goals as listed by the White House.

They are laudable goals, and if I had any confidence in government, I'd be really excited.  However, we have been fighting a "war on cancer" since Nixon's days, and the the truth is, I am not a believer in the government's ability to fix the problem of cancer (or any problem, really.)  However, for purposes of explaining that their plans are intended to help metastatic patients, let's take them at face value and examine what they want to do

Let's take the bullet points one by one:

Prevention and Cancer Vaccine Development.
The complaint is about the word "prevention."   I don't have a problem with working to prevent cancer but it is true,  working on prevention is unlikely to help a metastatic breast cancer patient. However, there is nothing wrong with prevention as a goal, as long as it's not the only goal. Fortunately, it isn't. Remember, bullet point one doesn't only say Prevention, it also says Vaccine Development. which has already proven to be of benefit to metastatic patients.

Vaccines for cancer are in its infancy, but there have already been vaccines that have been developed to help metastatic people and those with the worst, most aggressive cancers.  There have been small studies that show vaccines have helped people with deadly brain tumors, two conducted by Duke University.  One studied tetanus, one studied a re-engineered polio vaccine in patients with glioblastoma with excellent results.  (That one was shown on 60 minutes, and passed around the cancer community).  Vaccines are not for prevention only.

There are several types of vaccines being looked at to help the most advanced forms of cancer. Tumor cell vaccines are made from actual cancer cells that have been removed from the patient during surgery (metastatic as well) and are being studied in breast cancer (as well as glioblastoma, prostate cancer and others.)  One is in trial now for breast cancer patients who are stage four, called NeuVax, for HER2+ women. GVAX, a therapeutic vaccine made from breast cancer cell lines irradiated and engineered to express the immune molecule GM-CSF, is being tested in a phase II trial in patients with stage 4 breast cancer that does not overexpress HER2.   There are more being studied for metastatic people.

Will this help metastatic cancer patients?  I say 

Early Cancer Detection
I agree that putting money into early cancer detection will not help a metastatic cancer patient.  Since we do not yet know what causes mets,  early detection doesn't seem to be the answer to stopping it. Most of us with metastatic breast cancer, indeed, were caught early stage.   But if, in the early detection science, we learn how cancer metastasizes, that could be of value.  If they are only going to focus on finding cancer (mammograms) rather than understanding it, this section will be a waste.  But we must remember that the moonshot is not only for breast cancer, and some types of cancer are quite difficult to find at an early stage, such as Ovarian.  Finding ovarian cancer early does seem to lead to much easier treatments and a potential cure. Liquid biopsies fit under this umbrella, and they may truly find cancer early enough to lead to a cure.

Will this help metastatic cancer patients?  I say:

Cancer Immunotherapy and Combination Therapy:
Immunotherapy is what has kept me alive.  I would have been dead two years ago without it. Immunotherapy is Herceptin, Perjeta, TDM-1 (Kadcyla), all of which have helped me as a metastatic cancer patient.  CDX-011 is being studied for triple negative cancer.  There is immunotherapy for many cancers - Rutuxan for Leukemia and Lymphoma.  And breakthroughs move to different cancers:  Herceptin has used in stomach and lung cancers, and who knows how more it may help?  We must have many more therapies that help a patient's own immune system to fight cancer. More targeted therapies too, like Gleevac.

Most metsters are on combination therapy - herceptin/perjeta, or ibrance and faslodex.  Studying which combos can be more effective can only help metsters.

Will this help metastatic cancer patients?  I say

Genomic Analysis of Tumor and Surrounding Cells.

This is critical for understanding cancer and especially metastasis.  Once we do gene sequencing and can analyze and compare genetic mutations, we can find out which cancers will spread, which may never spread, maybe stop them from spreading, stop them from spreading more.  The possibilities are endless.  We may learn the deep mysteries of cancer by focusing on genomic analysis which is critical for not only metsters, but every single person with cancer.

Will this help metastatic cancer patients?  I say: 

Enhanced Data Sharing,

As I shared recently, Big Data, along with genomic sequencing, is going to be the answer to cancer. Every cancer may be like a snowflake, with mine different than others with HER2+.  Why have I responded to Perjecta and Kadcyla so well, and others haven't? If we could sequence my genes, and the genes of others like me, and not like me, and find that one difference that helps me respond, we learn something incredibly important.   We could unlock the the mechanism of metastasis with a searchable database of cancer mutations.  And if genius cancer researcher Dr. X at Duke has an idea, and genius biologist like Dr. Y at Caltech have an idea, and a genius geneticist Dr. Z at MIT have an idea, and they can access this database and see something from their own unique perspective, perhaps they can come up with new and better treatments, or a cure for all stages of cancer.

Will this help metastatic cancer patients?  I say:

Oncology Center of Excellence.
Okay, this is just another government agency which will likely come up with a lot of bureaucratic junk that slows everything down.  Sorry, but that's what happens.  Unless they let doctors and researchers do their thing, which is unlikely.

Will this help metastatic cancer patients?  I say: 

Pediatric Cancer
They plan to spend more on pediatric cancers, which I am not complaining about. And they will be studying metastatic pediatric patients certainly.

Will this help metastatic cancer patients?  I say:

Vice President’s Exceptional Opportunities in Cancer Research Fund:
They say, "To launch the National Cancer Moonshot, scientists, cancer physicians, advocates, philanthropic organizations, and representatives of the biotechnology and pharmaceutical industry will need to work together to focus on major new innovations in the understanding of and treatment for cancer."

Sounds nice but once again, too many cooks in the kitchen, too many people with competing interests.  This could be a disaster.  My personal opinion is only cancer researchers, scientists, physicians and biotech should work on this.  Start adding advocates and philanthropic organizations and it starts to get balkanized and you start to get people worried about their own cancer and their own interests.  And, you get people who read this and don't see "metastatic breast cancer" mentioned and because of the lack of three little words start being unable to see the forest for the trees.   Give scientists money and let them do their thing.

However, they go on to say:  "The work that the Vice President will be undertaking will ensure just that – bringing together all parties, breaking down silos, and sharing data to generate new ideas and new breakthroughs."  

They are so right.  The silos of each individual cancer/philanthopy organization/research institution has always problematic. When we don't work together, when we don't see commonalities, we can't solve the problem.  If we can truly break down silos and share information about CANCER, in general, find out what is similar and what is different in every way it appears - we can make huge progress.

Will this help metastatic cancer patients?  I say

In this world of cancer, we advocates also need to break down the silos of our own particular disease state and start realizing a win for one is a win for all.   The word "metastatic" doesn't have to be there if the entire design of the program will help benefit metastatic patients, breast as well as others.  Let's not miss the big picture.  If this works as envisioned, we could solve cancer in my lifetime, the way we have basically solved AIDS.

But we must see the big picture and support scientists and the ultimate goal of this moonshot instead of attacking it for minor things    Unfortunately, since the 1960s,  our country doesn't have a very good track record of letting things like this unfold the way they were designed, and every advocate is going to get in there and want a piece of it, and special treatment for their own disease. They will tear it down so much it's just another government agency that does nothing.

Not that I'm cynical or anything.

Wednesday, February 3, 2016

The Sweetest Words

Top of the roller coaster - again

The sweetest words in the English language include,  "I love you" and "You won the powerball, here is a check for 1.3 billion."

And, of course,  "Pathological Complete Response."

I have been lucky enough to hear two out of three of those phrases.

After being in remission for a year, my PET scan of October showed "moderately extensive metastatic disease."  Cancer was spreading all through my abdomen and spots were appearing in my lungs.  I was resigned, because this is the way cancer goes, but damn.  I just bought a car, I have a teenager who has a couple years left of college and my older son is getting married. My stepdaughter has the most beautiful child on earth and I am not done admiring him.  I didn't think I was about to drop dead, but I was worried I could be on my last year of life.  I pictured 2016 on my headstone.  I had intense pain (which is how it got diagnosed) and couldn't eat.  Living in the world of cancer advocacy,  I know way too many women who heard about a spread and died a few weeks later; this disease can move fast.  I feared the next woman mourned online could be me.

October Scan

After discovering this new spread, my doctor put me on TDM1, aka Kadcyla.

After 4 infusions, we wanted to see how it was doing.  Since my pain had dropped from an 8 to a 4, I was hopeful.  I had a scan yesterday, and today, I heard those sweet, sweet words.

I have a complete response to this chemo.   Nothing that looks like cancer to a scanning machine is left in my body.  Even the tiny spots in the lungs are gone.

I have heard NED twice now.  I am incredibly lucky.  Many women with metastatic cancer do not get this kind of news - ever.  I know a few who had a couple spots of bone mets that were stopped early and never progressed even years later, but most, like me, do chemo after chemo after chemo, cancer growing and retreating, until nothing works and then it's hospice time.  Very few get to hear NED twice, at least, in my (admittedly limited) experience.

I have an amazing medical team - a fantastic doctor.  I can't say enough good things about everybody there.   But so do others, there are many good doctors and caring nurses - for some reason, my body responds well to drugs that act on HER2.

We need more of these drugs, and more for other cancers.

I typically don't ask prognosis questions but I couldn't help squeaking out, "How long do you think it will last?"  My doctor just looked at me quizzically, and I remembered, he doesn't have his crystal ball.  I've been around this block, it could come back in 2 months or stay gone for years.  That's why I normally don't ask.  I smiled and said, "Never mind."  I'll take it as it comes.  That is what we with mets earn to do, and it is not a lesson that can be lost.

Go ahead, knock me down.  I dare you!

In a way, as great as this news is, I feel like one of those punch ball "bop" dolls.  Remember when you were a kid and had one?  At first, you could punch and kick the shit out of them and they kept rising defiantly.  Eventually, you'd punched them so much the air dissipated and they would lie tiredly on the floor for a second before they came up slowly - but they still rose; weaker but with determination.   After some time, wrinkles appeared and half their body would remain flopped over, but the other half?  It still arose.  It was down but not totally out.   Eventually, you'd put them in your toybox and close the lid.

Emotionally, I am realizing - holy crap, I have to spend more years in treatment, still going to doctors, getting chemo, getting scans,  managing pain, not healthy enough to work but wishing to do more, and never knowing the future.  Chemo every three weeks, ad infinitum.  I've heard the best news possible, but cancer isn't gone.  I'm in treatment forever.  My life is about continuing to be beaten and rising again.


Go ahead cancer, kick me.  I'm still popping up, and it looks like I will be for a while.  So my goal (again) is to pump some more air in, in the form of food and healthy lifestyle so I can pop up with a bit more energy.  I am not hitting that toybox for a while.

I asked my nurse if she'd seen anybody have my response after all the treatment I'd been through, and she said no.  Everybody seemed elated at my news. My nurse took a walk down memory lane, remembering how sick I'd been a couple of years ago on Gemzar.   My doctor laughed, "Now you have a good blog post."

He's right.

Statistics state that 22% of women diagnosed with Stage 4 cancer live five years.  Median life expectancy is 2 years.    It will be 5 years for me in May; the month my oldest son marries.  There are no statistics for how many live 10 years probably because few do.  

I don't know why I am lucky enough to get to hear this news, again, when so many wonderful, lovely people don't get to hear it even once.  But if I give any woman hope:  that it can be them, that metastatic breast cancer is something that some of us live with for a while, maybe a long while, that dreams can still come true and goals reached - than I will keep going and posting and putting myself out there.  I will do what I can to help metastatic women, help our voices be heard.  It is not an easy life; it's a life with unique challenges, but it's a beautiful one.

I know I needed to see people like me back when I was diagnosed, to know it was possible to live past what you see and hear online.  So here I am.

When I told my youngest son, he said, "You are crazy good at fighting cancer."

Yes.  Yes I am.

The Sweetest Words

Monday, February 1, 2016

Overdue Book Reports

I see I did review a couple of these.....

It's like high school all over again.  I am assigned People ask me to review their book and write a report review.  I love to read, and pretty much always agree that this is a good idea.  What is better than supporting an author?

In high school I geekily ended up reading the assigned book the first night. I was such a good student, I'm not quite sure how I graduated with an only 2.0 GPA.  Anyway...those thick glasses came in handy, I was a reader.   But somehow *cough ADD cough* I never did the report until the night before it was due, and then I'd be all crazy, writing until my hand cramped, staying up long past my parents went to bed, so busy scribbling I didn't have time to even to dot my i's with little hearts or smiley faces. (Yes, kids, back in those days we not only had to hand-write our papers, but we also had to draw our own emoticons.  It was a primitive time).

Now of course, I'm a mature adult.  I get the book in the mail and read it immediately.  And then I put it down to take a nap, as we adults must sleep a lot.   The next day is chemo.  On the third day, I decide to write about it but I just need to check facebook for a second......then instagram, then twitter, I don't want anybody left out.   And, of course, I haven't played Zuma in a while so maybe just a few games.  Wow, I'm tired, I better take a nap. (*see, adult)  By then, ADD, compounded with chemo-brain is in full force and the entire thing slips my mind.  Not only can't I remember that I had something to review, when I finally remember, the entire plot of the book has slipped my mind. Naturally, I have to flip through the book to refresh my memory, but where did I leave it?  It isn't in my reading room, it isn't in my bed.  It isn't anywhere!  Did the dogs take it?   I think those damn dogs have stolen them.  I have to search under their beds and look behind their bones or under their basket of stuffed toys to try to find them.

Yes, the dog ate my homework.

Greyhound bookmarks

And then because I have cancer and something hurts, and I can't walk around the house anymore,  I think "I'll do it later" and then chemo brain takes over again, and I forget what I was doing.  Until I remember again - and I go through this process over and over.  In the meantime, these poor writers are waiting for me, just as I wait to hear a comment on a post.  Eventually, they give up, sadly, and go about their lives of obscurity, all because I wouldn't review their book.

It's very mean of me, to be honest.  I'm a terrible person.

It's amazing how few of them remind me of my forgetfulness.  Perhaps they are sympathetic to my illness, or since many of them had chemo themselves, have completely forgotten about me.  But one sharp writer recently (and kindly) asked, "Hey, I didn't see your review of my book, did you ever post it?"


I thought I did actually. Unlike many, I remembered her because I see her on facebook.   I may have posted a review on facebook as I sometimes do. But you can't really go through old stuff on facebook and look easily.  However, I told her it'd be on my blog, and a search of this blog shows I never did review it here.  So, I need to be honorable and do what I said, so I began the search.  And this time, the dogs hadn't stolen it.  But when I found her book, guess what?

There was an entire stack of cancer books underneath it.

At this point, with a few exceptions, I don't remember what I was asked to read and what I read on my own, what I reviewed and didn't.

Considering I have a PET scan tomorrow that could give me the worst possible news, I think I better get this off my conscience, don't you?

So I am going to mention them all, with the exception of a couple I know I did review, or ones I think I bought myself.  They aren't going to get a full-fledged review anymore but I can assure you that each one I enjoyed and all are worth reading.

I feel miserable and guilty but what can I do?  I'm just a chemo-addled, ADD, crazy, lazy woman with dogs who like to read.

So here goes.

Renee in Cancerland by Renee Sendelbach.
Renee writes the blog, Team S, Living with Stage IV Cancer and is an amazing woman.   This is a touching and brave book about her life with metastatic cancer, which is in her brain.  If you are looking for a grammatically perfect book, this is not for you.  There are some typos and errors in grammar, as would be expected for somebody whose cancer is in the brain. (And who am I to judge?)  Don't take that to mean that she has nothing to say.  She goes deep into the heart of what it is like to live with a devastating illness that she knows will take her life.  She writes about her love for her husband and children, her hopes and fears.  There are photos of herself and family, and she shares the life lessons she's learned, along with a bit of poetry and a lot of artwork sprinkled in.  (She's a talented artist.)  This is raw insight into the thoughts and experiences of a metastatic cancer patient, and I recommend it.  I support her fully, and taking on a book when you have gone through the treatment she has - it's pretty much incredible.

Kicking Cancer to the Curb, by Carol Miele.
Despite the title, Carol has been living with metastatic cancer since 2010; hers is in the bone.  Carole has been an advocate for cancer patients, likely because of her nursing profession. Her book is full of advice, such as what people should say to patients with mets, and what not to say, as well as how one can manage it.  She also vividly describes her experience of living with metastatic disease, including things like the mental and spiritual changes she experienced.  She shares defining moments in her life that shaped her thinking as she faced this catastrophic disease.   There are poems and quotes that are meaningful to a cancer patient.  Her goal in writing the book is to impart information, support and approaches she has learned to make the experiences of others less burdensome, and she was highly successful.  If you have mets you will get support and advice here.

Beauty After Breast Cancer by Katelyn Carey and Joseph Linaschke.
It's hard to imagine a cancer coffee table book, but this is as close to one as you will get.  Katelyn is a nurse who had DCIS. When she discovered she needed a mastectomy, she realized there were no realistic photos showing what she might look like. She's right, it is a complaint all patients have - we want to SEE what we may look like, and yet there is nothing available.  Sure, plastic surgeons may have photos, but they only show their best case scenarios, and those photos are unrelatable -  it is a woman standing straight forward, her eyes obliterated if you see her face at all, and a lifeless torso from front to side - they are the mug shots of mastectomy.  There is no life in those photos and so nothing that we can see that gives us knowledge or hope.  So Katelyn decided to gather women who have had breast surgery and take realistic photos of women living their lives,  with the hopes that book ends up in physician's offices.  In this book, women will not only see what breast surgery looks like, but learn that this surgery will not end their beauty.  This book is full of women with single, double, partial mastectomies, with and without reconstruction - surgeries of all type.  Each tell their cancer story alongside their photos. They are not models, they are regular woman who had cancer and who overcame this body changing experience.  Not only do you get reality, you get it in a way that shows beauty does not leave just because cancer invaded your life. The professional and gorgeous photos of women is full of joy, and the attitude is that they may have lost a body part, but they didn't lose what is most important. Bravery is beauty, not breasts.™  This should be in every single breast surgeon's office.  I will be donating my copy, as beautiful as it is, to my own breast surgeon.  I always thought I should pop in and say hi to see if he remembers me.  Old-timers here will remember Rockstar Raja!

My Healthcare is Killing me! by Julie Klein.
I thought this book was hilarious, and I really liked it - but to me, it didn't have much to do with the description.  She said she had to confront indifferent and insensitive doctors, bureaucratic policies that prevented her from getting timely care and was in a healthcare maze. I expected her to not get treatment and have to deal with cruel physicians and be on the phone all the time fighting, and it didn't seem that she had a more difficult time than most of us have, in fact, it was  - easier in many ways.   As I read it though, I thought that she seemed to have pretty good insurance and her doctors seemed quite patient. It is interesting the different perspective we can have about the same thing, isn't it?   Aside from that difference, I thought her well-written and funny descriptions of her anxiety and the problems she faced going through breast cancer were all too spot-on, and I'm jealous at how funny she actually is.  Her characters are well drawn, her descriptions vivid and I found it charming.  Definitely worth a read if you are newly diagnosed.

Dr. Susan Love's Breast Book, by Dr. Susan Love.
I don't think this book needs much description - if you are reading my blog you have likely heard of Dr. Susan Love.  This book is considered the "bible" of breast health.  She came out with an update so that is what I have read.  My complaint with this version is the same as my complaint with the last - there isn't much about metastatic cancer.  It takes 509 pages before we get a chapter about mets (which ends 60 pages later) and that chapter is not only about mets, but includes regional relapse too. If memory serves, this is more space than last version, but still not very detailed.  No matter, this is the comprehensive book explaining pretty much every aspect of breasts and breast cancer.  This is the first book I think anybody diagnosed with cancer should get.  There are checklists, definitions, and basic information about breast cancer that everybody should know.  Don't let the size put you off, you don't have to read it cover to cover, just find the parts of interest.  You will handle your cancer much better if you have this as a reference.  You should know what the details mean.

When Cancer Hits Home by Patrick Maguire, MD
Not specifically about breast cancer, Dr. Maguire takes the most common cancers and gives an overview of each.  He starts with a patient story, then describes Risks and Causes, Signs and Symptoms, Diagnosis, Staging, and Treatment.  He seems to think that risk for cancers can be reduced by outside methods, something I'm not so sure about, but the descriptions and stories of each cancer will help anybody who may have cancer in their family and wants to monitor the details. Dr. Maquire has a degree in English, which means this is a well-written book.  A good, general reference for cancer.

Bald is Better with Earrings, by Andrea Hutton
This is subtitled "a Survivor's Guide to Getting Through Breast Cancer"  and it is chock full of tips for managing the symptoms that come with chemo, radiation and a mastectomy. There are tips on managing your port, your nails and your poor hair.  It is an amusing and insightful how-to guide for getting through early-stage cancer treatment, one I highly recommend it.

Death, by Todd May
Confession: this one is written by my cousin, who is a professor of Philosophy at Clemson University.  I have only met him once in my life and we haven't spoken in 40 years and he has no idea that I am sick so this is not pushing a family book.  I wasn't asked to review it - I was given this book by my uncle and found that it was fascinating.  He writes from the perspective of an atheist (guess it runs in the family) but does not diminish the role of religion in facing death.  He writes about what it is like to be human beings who understand our mortality and know what it means and to go on living in spite of knowing our end.  While it certainly reads like a professor wrote it, he brings up fascinating questions about the role death plays in our lives and our society.

Pilates for Breast Cancer Survivors, by Naomi Aaronson and Ann Marie Turo.
I must have said yes to this book when I was in remission and thought I could get healthy again.  Since the book hadn't been opened, I likely got the news of my relapse around the time it arrived.  I confess, I didn't read it in depth but I don't think it's necessary.  We all know Pilates is good for you, and this book has exercises for breast cancer patients with modifications for the injuries we sustain, and even the surgeries we have (such as DIEP or TRAM). They also understand lymphedema and work around that.   Despite the fact that I didn't read it or go through it in detail, I VERY MUCH recommend it.  I had a terrible time after my mastectomy, and had I exercised or had a program like this, I might not be living with the shoulder pain that I have today, 6 years after that surgery. Everybody who has breast surgery MUST do an exercise program.  Period.

A Cancer Companion, by Ranjana Srivastava, MD
Written by an oncologist, there is practical advice on what to expect after diagnosis, (including how to find an oncologist), what to expect before and after treatments both physically and emotionally.  While she doesn't focus on any particular type of cancer, she does describes the basics that are the same for everybody: what hearing "you have cancer" can do to you, what an oncologist should say, what to expect during chemo, how appetite may be affected - even what to say to your kids.  The book is written in a accessible, conversational way.  It is definitely a good book - and advice from an oncologist is always good to have, don't you think?

I hope I didn't leave any off.  From now on, if I do a book review, I'll post it on facebook as it is a place I find quick and easy to do and then I won't get so far behind. My final recommendation is one that I just read on my own, called:

When Breath Becomes Air by by Paul Kalanith
This book is in an entirely different category.  It is an unbelievably beautiful book, with gorgeous prose, written by a physician who died of cancer.  Paul captured the thoughts and feelings that those of us experience in such a truthful, graceful, unsparing way that it left me in tears. We may be able to understand and accept that we are going to die but we still feel the ineffable sadness at the loss of our future and frankly, at the knowledge of our obliteration, and Paul worked through this struggle and shared it with us.  It's a jewel of a book, this reflection on mortality. It will make you gasp with the beauty of his words and weep at the losses that cut so deep. We all die, and as a neurosurgeon Paul knew that better than most. Coming to grips with it at a young age is a struggle, as I well know. In the end, we look through our lives to see what our legacy will be. He left behind two beautiful things: his daughter and this book.  I believe it will be read for years to come and become the definitive book on human mortality. It's simply beautiful. I cannot recommend it enough but buy tissues for when you read it and you are warned - it is a hard read for those of us who are also in his shoes.

I really wish I could add, "Breast Cancer?  But Doctor, I Hate Pink" to this list but the publisher/editor I had was not working out.  She was a small, one person publisher, and I suspect that she didn't really have time to turn this blog into a book and after many months, still had not worked on it, giving me excuse after excuse.  So if you are a publisher who does want to publish my blog....give me a heads-up.  (I do not have the time or energy to self-publish, and I admire the women above who have!)