Three Book Reviews: Mani-Pedi Stat, The Art of Adapting, Living Without the One You Cannot Live Without

I love to read and always have.  Unfortunately, I have had some difficulty the past few years.  I think chemo-brain has made reading a struggle:  concentration, memory and the ability to stay awake are all critical skills when reading a book.  After my 3rd chemo, my taste had changed from New York Times Notable books to Chick-Lit and YA, after my 5th chemo I could only manage newspaper cartoons and after my 7th chemo I was down to BuzzFeed click bait.

Cancer definitely changed my brain.

I've been feeling a bit more normal and back on track, able to concentrate slightly more than a year ago.  I am not back to full-functioning and I suspect I never will be again, after all, I will be on treatment for the rest of my life.  But still, it is nice to complete a book again, without my mind wandering, without the sudden inability to remember who the characters are, and the distraction of putting the book down and forgetting where it was and then when finding it, having to start all over because I'd forgotten the plot.

As a world famous blogger, people sometimes ask me to review books.  I've been saying no to these offers for a while for the above reasons.  Sadly, I have disappointed a few authors and one even a friend, by promising to read their book and review it, and then totally forgetting my offer and that the book existed. Whoosh, just gone from my mind.  I certainly don't want to keep that up, I do have integrity. Sometimes you don't realize you can't do something that you used to do until you have had some fails - that's the charm of chemo, my friends.  So I decided just to say no to all books.

And, the offers dwindled, and all was well.

Recently, somebody new in the PR world found me and asked me if I wanted to read and review some books.   I decided I was feeling better, clearer, and more able to concentrate, so I said yes.

We have to adjust to our disabilities, right?   So knowing I am super forgetful, I put the books in a special place before I read them, so I would know where they were - not in my book filled library. I read them in one location so I wouldn't lose them - none of this moving from chair to bed to chaise carrying a book around for me, that's a sure way to loss. And, because I tend to forget the plot immediately after reading it (and sometimes during) I took notes on a piece of paper that I left in the book so when I was done I could review what I thought when I read it.

Finally, I decided to review all three in one blog post so I wouldn't have to remember which one I'd done already.

So I had success this time, and you will see it below.





 Mani-Pedi Stat, by Deb Ebenstein.

This is a memoir by a "Jersey Girl" (that must mean something beside somebody who lives in New Jersey, right?)  who got Hodgkin's Disease when she was 16.  At that tender age, she had to face her mortality, a difficult thing to do at any age, but life-changing as a teenager.  She also had the painful treatments we all know too well - the hospitalizations, chemotherapy and radiation. Because of her changing appearance, bald and bloated from steroids - hard on a woman of any age but traumatic for a teenager - she focused on painting her nails as a way of hanging onto normality.

That is the running theme of the book: no matter how bad she looks or what cancer does to her, she can have the normality of a perfect manicure.  (Her nails didn't fall out like some of ours do, thank goodness.)  She becomes a "cancer citizen" and learns the rules of living with her disease, the lingo, and how to navigate through this medical lifestyle.  That is her youth, as it has been my middle years.

As she finishes her treatment and puts cancer behind her and goes off to college, she ends up being a party girl, living a "toxic" lifestyle, an outward manifestation of what she feels cancer and its treatment has done to her.  With help, she realizes she is using this lifestyle to hide behind her feelings over her  lost childhood.  And, as you might imagine, she has a second bout of cancer, this time breast, and comes into her own, dealing with it like a pro while managing a family and life and, of course, polishing her nails to perfection.

While this book is described as laugh-out-loud funny (who thought up that cliche anyway?) it is not. There were amusing parts, and I wouldn't call it a heavy book but it was more on the serious side, I thought, maybe because I have special inside knowledge into what she experienced.  There were sections that I did recognize as being very true and that anybody who has experienced cancer will relate to, especially the parts where she gets over the anguish of cancer discovery and learns to live in cancer world, and then has a difficult time transitioning out.  I think we all experience that to some degree, no matter the length of our treatment.

It is a highly readable coming of age memoir with cancer as the change that spurs growth. My only nit was I thought the author could have used the nail gimmick a bit more forcefully considering it is the name of the book and part of the cover - it seemed to be strong first and then petered out.  But I got an unedited version of the book and perhaps changes were made.    I truly liked the metaphor of the polish equating to her sense of normality.  I highly recommend this book as a light and real read that describes the cancer experience with truth.   I read it in two sittings.  

Because she does well and makes it through, I think the book with a few bottles of nail polish might be a good gift for anybody who has been recently diagnosed.

***



The Art of Adapting by Cassandra Dunn

This family story is told from four different viewpoints:  Lana, mother of two whose husband just left her, Matt, her brother who has Asberger's Syndrome, Lana's son Bryan, a teen struggling to find himself, and Lana's daughter Abby, a former honor student who is now struggling with an eating disorder.

Despite the fact that alternates voices, I found it easy to follow and quite an entertaining book. This was another one I read from start to finish.    Each character's voice was fresh, their individual story was intriguing and the way the author wove them all together to change them from a family in crisis to a family that learns to lean on each other was masterful. Each person had a tightly woven character that made me want to root for them.  Matt with his autism was the most amusing, with his odd ways yet observant and kind personality. The boy, Bryon, with his dream of being a Parkour expert and finding his way with girls was also an excellent character. Abby's eating disorder seemed more muddled to me, and the way her Uncle helped her through it was unique. Is it great art? Maybe not, but it is a good read and a wonderful way to spend a Sunday afternoon.  I would definitely read another book by this author.

While Lana finds a lump and has a cancer scare, it is not integral to the book and completely unrelatable to somebody like me who has end-stage cancer, so I only mention it because I believe that's why it was sent to me for review.  It is not a major plot devices and is really only a few sentences in the book.  The point is, this family has many secrets that they all learn to share to become a family.

I would recommend this book as a good novel for somebody who wants to take their minds off their day-to-day lives. It's a nice, summer, beachside read, or a nice cozy autumn fireplace read.   You can buy it in hardback, or in kindle.

***



Living Without the One You Cannot Live Without, by Natasha Josefowitz, PhD.

When I was offered this book, I was a bit hesitant.   It is poetry, and poetry has never been my genre.  Finding out that the woman who wrote it is in her late 80s made me change my mind.  I know that she has wisdom about life that many of us do not have, and a perspective that I likely will never get.  It is a book about grief and loss; her husband died of cancer and she described her feelings in poetry.  So I said I would read it and review it, as I know that grief is part of the cancer experience for far too many of us (and our families).

I'm very glad I left my comfort zone and read this book.  I am unable to judge good poetry from bad but I have to say, I really found this book moving.  She takes us through the early days of shock at her husband's death, to grief, and finally to acceptance and moving on. Her first poem describes how she feels, lost, not in the center of anybody's world any longer, at the periphery of the lives of others. She goes back in a couple of poems to describe the hospital experience with her husband, the stress of surgery, the realization that hospice is next.  Sadly, his death is just a sentence or two but very profound. She works through emotions and finally, acceptance comes, as it must:

"I used to dread
coming home in the evening
to silent, empty rooms
feeling so terribly alone
tonight for the first time
I looked forward to
some quiet time
in my quiet home
after a busy day
sitting down to read my mail
checking my computer
sitting down with a book
sitting alone
without feeling lonely
something has changed"

I highly, highly recommend this book for anybody who is going through the grieving process.  I believe it will help somebody feel less alone in their own grief, and also know what will come. Whether they feel angry or sorry for themselves, they will know they aren't alone in those feelings. It also is a very short read, one sitting for me, and the poems, as I have demonstrated above, are very accessible.  I believe that she gets to the heart of the feelings of grief.

If you don't know the right words to say to somebody who has suffered a terrible loss, perhaps just a card, a hug, and this book is enough.

Save Your Brows - Tip for Chemo!

If you are starting chemo for the first time, or have just started it, this video is for you.  It is my very own invention, and if there was any way to make money on it, I would. I do, after all, have a child starting college in one month.

And is that ever going to be a blog post.  A long, whiny, tear-filled post.  And I won't even be talking about the money.  Yet.

Anyway, since there is no way to capitalize on this idea, I figured I would just help a cancer sister (or brother) out.  In return, please like this video and/or subscribe to my YouTube channel.    I think it's time to prove that YouTube is not just the realm of the young, beautiful and well-lit, don't you? Why can't the old and sick have sponsors and fights with other YouTubers and all that fun stuff?

Typically, if you are on a chemo that causes hair loss (and not all do) your body hair falls out first, and the eyelashes and the eyebrows are the last to go.  You may be lucky and keep some of your brows but if so, they will look like vague shadows of their former selves and will not be defined enough to recreate them well.

My eyelashes hung in there - two of them.  They looked like spikes sticking out of my lids. Why I didn't pull them out I don't know; maybe it's the same reason I kept one of my breasts.  I wanted a souvenir of what had been.

But then why don't I dye my hair back to its "real" color?  Life is a mystery, girls.

Please share this tip because I do believe it will be helpful for many a cancer newbie;  they might appreciate it more than you know.  Losing your hair is something we can manage and deal with but losing your eyebrows and lashes - that is what really makes you look sick.

Even at the "look good, feel better" class I didn't see this idea mentioned and hey, they taught us to make a hat out of an old tee shirt!

I do believe it is my great contribution to cancer society.

My Bid for SXSW - New Video and Vote!

Have you voted for me to be on a Panel at SXSW yet?  David Kopp from Healthline and I want to talk about what it would take to reach for a cure for cancer, and what today's modern, empowered patient can do to help achieve that goal.  Surprise, dumping a bucket of water on your head is not part of the plan!  

To vote for me start by going here:

https://auth.sxsw.com/users/sign_in

Create your account.

They will send you a confirmation email.  Once you click on confirm, you can vote for me here:

http://panelpicker.sxsw.com/vote/40477

Click the thumbs up icon to the left.

Also, if you have a registered Disqus account, you can log in with that and leave me a comment. If you answer some of the above questions in the comments I can include your viewpoint in what I say at the SXSW panel.  I will be acting to represent all cancer patients, not just myself, so your point of view is important to me.

For some reason, I couldn't do a direct YouTube link to the video in this blog, so I had to save it and then reupload it.  If you want to commont on YouTube, click here:  https://www.youtube.com/watch?v=weCVRZbgIWo

Friends

In the late 1980s I was a young, single mother, with big hair, of course.  Looking back through the dewy gauze of age and chemo, I remember my life then as wonderful, if not exactly carefree. Whatever problems I had have been softened and smoothed with time.  I was unmarried (oops) and had the most beautiful, busy, and sensitively charming child you could ever hope to meet.  Yet of course, with no financial support, money was always a struggle: I do remember that.  I'd been a night bartender, a job I could no longer do with a child as it's impossible to find childcare in the evening, and daytime bartenders don't make enough to pay for childcare.  I stayed home with my son until he was nearly 3, living on very little.  To pay my way I did odd jobs, (some very odd).  I borrowed money from my dad, and became incredibly frugal,  which is not my nature.  At all.

When he was almost 3 and the money situation became intolerable,  I went back to school and lived on student loans - which I only paid off recently. My rental home was in a beautiful part of Sacramento - full of tiny craftsmen bungalows and mature, leafy trees creating a canopy over the streets. To this day, it is a very desirable neighborhood despite the small scale of the homes.

One of the many odd jobs I had was delivering flyers.  Yes, I was one of those people who make you angry by littering on your property and whom you have to clean up after.  I no longer remember what the advertisements were for, but they weren't pizza door hangers, they were full sheets of paper.  I would get the flyers and rubber bands the day before I was to deliver them, usually about 500 pieces of paper.  After my son went to bed, I'd turn on the TV and roll them all up tight (the better for tossing) and secure them with a rubber band.  The next day, I'd pop them in plastic bags and hang them from the handles of the umbrella stroller, along with snacks for my son. I'd put my sunny blonde boy in to balance the weight, then off we'd go for a day of work.  For delivering flyers within the zip code requested, I received 5 cents a flyer, cash, which I thought was pretty good pay.  I was a fast walker.  I could make 25 dollars a day, although getting a job every day was not always possible.

Through sun and wind, my son and I would walk through Sacramento neighborhoods; viewing roses and azaleas, oaks and mulberry trees, tripping over lifted sidewalks, stopping to inspect an interesting bug or beautiful leaf.  I'd imagine which house I'd move into when money was less tight, and liked the McKinley Park neighborhood the best.  I walked through rich neighborhoods, which cost me dollars as the homes were too far apart and would lengthen my delivery time.  Poor ones were better for me financially, but often I'd be looked at with suspicion because people were home and none to happy to see a stranger approach their property.  My son was my saving grace - most people left me alone because of him.  Back then, they didn't have the new subdivisions where houses are inches apart, nor did they have GPS,  so I'd have to be speedy to get my flyers delivered and know the best routes.

Day after day, my son and I would walk (and roll) past beautiful landscaping and barking dogs.  We'd get wet from sprinklers or crunch through leaves. The wheels on his stroller took a beating as we'd go over walkways and lawns to find a delivery spot. We'd encounter nice people and suspicious ones.  We'd enjoy the weather or get soaked from the rain.  I'd try to leave each flyer in a place respectful to the homeowner and fast for me.

Flyers depleted, we would eventually reach a park where I could set my boy free to run and let him burn off some of his considerable energy. There are parks everywhere in Sacramento, and I never had to search to find one.   He no longer remembers this but it is one of my fondest times of life.  I do remember the struggle to feed him,  but more, I remember the hours spent in his presence, sun glinting off his hair, his happy smile and cries of "Watch me, mommy!"    I loved being a mother - his mother - and would do it all over again.

On the end of the street near my house, there was literally a "corner store" like you see in movies.    Unlike most convenience stores, there was no parking lot, no flashing beer signs.  Just a simple store where neighbors could pick up things they'd forgotten on shopping trips.   Bananas, candy, bread. I would regularly go there when I needed a small item and didn't want to put my kid in a carseat and drive. As my son grew older in that house, his goal was to be able to walk there by himself.  I think I finally let him when he was about 6, me trailing behind, hidden, in case anything happened.

It was to this store I was walking one day, needing milk or something one late afternoon.  I'd counted my change and dug through the couch, and had just barely enough, as usual.   I walked to the corner, light flickering through the leaves overhead, sidewalk rumbling under the stroller tires, the afternoon light fading amber as it filtered through the trees.

I ran into a woman who had a child the same age as my son, also picking up something at the store. She said hello to me, instantly recognizing our commonality.   Being a reserved person, I just smiled and prepared to go on my way, but she started chatting and asking me questions, and it turned out she lived across the alley behind me.  Within minutes she had invited me to her house for a drink.

My reading material of choice back in those days was True Crime.  Apparently, being a poor single mother wasn't frightening enough; I had to add gruesome murders to my nightly entertainment. So when she invited me, a complete stranger,  over to her house,  my first thought was, "She could be a serial killer.  If I go over there, she could murder us both."

I looked into her very large, sparkling hazel eyes, noted her well-kept brown hair and groomed appearance (I was a mess in a tee shirt, jeans, flip flops with my nails undone).  Her handsome son was the same age as my own, and I thought they could be friends.  I decided if it came down to it, I could take her.  So to her house I went.

And so began a friendship spanning 25 years.  Like with all relationships, there have been ups and downs, good and bad.  We have many differences; she is religious, I am not. She loves home decorating and repairing and building stuff - I am too lazy. She loves flowers and I have a black thumb.  Her parenting philosophy is different than mine; hers is more biblically-based I suppose, and mine comes from psychology books, but the truth is, the similarities outweigh our differences. We both love our kids; we both love raising kids.  We had similar, cold, mothers, and we both have very silly senses of humor.  We both like clothes and makeup and girly stuff.  We laugh a lot.  She is the person who I just went to visit in Utah, and she has come to see me.  We have both aged, of course, but she remains as she was back then: funny, welcoming, open, most importantly,  not a serial killer. She's still quite beautiful for a woman older than me!

She is a bright spirit.

As friends do, we have discussed most things in our lives, which have taken different courses. There are times I've had more money and times she's had more, and there are times when she's been through tough things and times I have. She has been with me as I have faced cancer and I was there as she faced marital abuse.  She is the woman I wrote about who came to decorate my bedroom so I would have a nice place to spend my final days.  She never shied away from the difficult conversations, which made me love her all the more.

One day, back when I was sicker than I am today,  I asked her what it was like for her to know her best friend didn't have much time left.    I asked her to write a blog post for me.

She said that no matter what she wrote, it came out maudlin and depressing, which I understand.  It is hard to stay away from maudlin when facing a terminal illness, as you can see by any movie on the subject. Neither she nor I are really into sentimentality and the cheesy take on life.

After our last visits,  she took a different approach - a humorous one.  One might call it gallows humor, which as you know I love.   I think in reading it, you will see why we are friends.

TIPS FOR WHEN YOUR BFF IS DIAGNOSED WITH CANCER

by Alexus P.
FRIEND FIRST, CANCER PATIENT SECOND

If your friend is diagnosed with cancer, what do you do?  Run away? Stop being friends? Cry?  Get hysterical?  NO!  The very first thing you do is get dibs on her closet (if she is a fashionista - which MY friend is) and any furniture you want that her husband hates.  No kidding, that's the first thing you do.  You must establish your right to these things - even before you know what kind of cancer she has, if it is treatable or any other pertinent information.  Establish that you get first pick of every and anything.  You might even be able to go so far as to march right into her closet and make selections while she lies in the bed, too sick to move, protest or fight you off.  Do it before she can get out of bed and lock the door effectively keeping you out.  In fact, if you're smarter than I am, you'll probably have your friend make you a key to her house so you can march right in and help yourself - maybe while she is out having chemo and her husband and children are gone.  Geez, why didn't I think of this earlier? 

Don't forget things like shoes, handbags, jewelry, and her newly acquired wigs.  She's never going to wear those wigs anyway - they are much too scratchy and uncomfortable with a bald head and you have all that hair to keep the wig from actually touching your scalp.

Next on the list - make sure that someone will notify you upon your friend's death so you don't have to read it in the newspaper.  The sooner you know, the sooner you can start wearing her clothes.  Now, some people might look down on you saying you're an opportunist.  Maybe.  Maybe not.  Depends on just how good of a friend you were!  I mean, if after you finished picking over her closet, if you held a bowl for her to puke in and then gave her a cool cloth for her forehead or sat with her while she was ill;  colored pictures with her when she only had enough strength to do lame things, then you might be okay.  I never did any of those things.... so maybe I'm an opportunist.

Seriously though, just because your friend has been diagnosed with cancer, the friendship doesn't end.  Not if it's real.  This is the time when your friendship is tested.  In my case, I have tried to be supportive and understanding while watching my best friend decline.  I've worried from a distance because we don't live close to each other.  I've waited for news on blog posts, status updates and tweets.  I've prayed and I've cried.  I try not to think about the time when my friend will no longer be only a phone call or a text away.  The one thing I will never do, is forget our friendship - this is something I will cherish a lifetime.

For now, my friend has a reprieve and we can both breath a little easier while we wait (hopefully 20+ years) for the other shoe to drop.... and hopefully it will be, at the very least, a Christian Louboutin.  We both deserve that!

In the words of Bruno Mars:

Oh uh-huh
If you ever find yourself stuck in the middle of the sea
I'll sail the world to find you
If you ever find yourself lost in the dark and you can't see
I'll be the light to guide you

Find out what we're made of
When we are called to help our friends in need

You can count on me like 1, 2, 3
I'll be there
And I know when I need it
I can count on you like 4, 3, 2
You'll be there
'Cause that's what friends are supposed to do, oh yeah
Ooooooh, oooohhh yeah, yeah

If you're tossin' and you're turnin'
And you just can't fall asleep
I'll sing a song beside you
And if you ever forget how much you really mean to me
Every day I will remind you

Oooh
Find out what we're made of
When we are called to help our friends in need

You can count on me like 1, 2, 3
I'll be there
And I know when I need it
I can count on you like 4, 3, 2
You'll be there
'Cause that's what friends are supposed to do, oh yeah
Ooooooh, oooohhh yeah, yeah

You'll always have my shoulder when you cry
I'll never let go, never say goodbye
You know...

You can count on me like 1, 2, 3
I'll be there
And I know when I need it
I can count on you like 4, 3, 2
You'll be there
'Cause that's what friends are supposed to do, oh yeah
Ooooooh, oooohhh

You can count on me [AND] I can count on you.  

FYI:  She did abscond with my wigs, some of my bags and I agree she has dibs on any of my clothes she wants. More importantly, she did sit with me and color with my Spectrum Noir markers - and I didn't even know she thought it was lame!

But you know what she left out?  Dibs on my husband.  Maybe we talk a little tooooo much.

About 1990

2014

Five years......

What can happen in five years?

A silly, long-haired 12 year old boy grows to become a lanky, bespectacled, scary-smart 6 foot tall man, packing for the start of his elite university education and possible career as a scientist.  A young man, 22, struggles in a low paying retail job until he too attends school, gains a fiance, now has a career rather than a job and a bright, solid future ahead. A husband gets a little more slumped, a bit more grey, worry lines mixed with smile lines, but he retires from his own career and gets to play a little more golf and watch a whole lot of baseball.  One stepdaughter finds her own sort of family and career success.  Another marries, grows more beautiful by the day, has a baby.   And as the first of a new generation is born, the hopes of a crazy, disparate family are joined together, glued by that smiling, giggling baby face.

What will he see in his lifetime?  It will surely be amazing.

But really, I'm glad he doesn't have my genetics.

And, me?  I am still here.  I have made it to the five year mark, as only 30% of women with metastatic cancer do.

I sat on an exam table half a decade ago and heard the words, "you have cancer."  And I have sat on exam tables hundreds of times since.  That paper rustling under my butt is now the sound of "home."  Did I have metastatic cancer back then?  We'll never know, but it is likely I did.

August 17, 2009:  if I had thought to five years ahead (which as an ADD woman I didn't)  I guess I would have felt this blog would be long abandoned, left for other early stage women to find and discover what I experienced, eventually to deteriorate with neglect.  I thought my husband and I would still be working, paying for my son's college (we did suspect he would go to a top five university - we got that part right).  I never doubted that cancer would be a mere blip in my life,  and I would be back to normal, working in a school, meeting new kids, laughing with teachers, calming the parents,  and fixing the damn copier at least a hundred times a year.

(Why can't teachers take care of copiers?)

But then cancer was discovered in my liver, and my life as I knew it, and my future ended.  It took a while to regroup and redefine myself.   Who am I now?

A person without a job, a purpose, a future is .... what?

These five years have been dominated by disease.   Having cancer is a full time job in itself, and I hung on to my employment by my fingertips, but eventually, I had to open my fingers and drop.  I was too weak from treatment to work and even if I had not been, just the sheer number of appointments would have made any employer rightfully throw me out the door.

In five years, there are 260 weeks.  I would estimate I had about 200 doctors appointments, considering primary care, oncology, surgeons, plastic surgeons, radiation oncologist, infectious disease specialist.  Additionally, I would guess that I've had 20 MUGAs, 50 CTs, 10 PETs, a bone scan here and there.  There were more weeks than not that I've had two appointments.   I've had mastectomy, reconstruction, port placement, liver resection and ablation, fiducial placement and SBRT.  I estimate I have sat in the chemo room over 150 times, watching the drip, drip, drip of one of the 7 different chemos, 3 targeted therapies, and dozens of other drugs to keep me from barfing, or awake, or feeling pain, or anxiety.

Being metastatic, this five year mark does not mean anything special.  For the 80% of women with early stage ER+ cancer,  the five year mark is the date that the odds of relapse drop dramatically at - it becomes the  time where you are more likely to be in the winners bracket than not. (For HER2+ women, because the cancer is so aggressive, it's 3 years. I didn't even make it to 2).

So for me, it's just a day like any other day.

And yet, over the past few years I've had to redefine myself.  And, I am still doing it.  My job as mother will be mostly over when my son leaves for college although it has been half-assed for the past few years anyway.  I'm lucky I had the kind of kid who was self-sufficient. I can no longer work in any real way again, as I continue with the ups and downs of treatment.  I have two drugs infused every 3 weeks,  and another infused every month, one which causes severe anemia.  That means I'm sick and exhausted for a week, recovering for a week, feeling good for a week and then I start all over. I can't be housewife, as I'm too tired. I felt good a week ago and took all the stuff out of the bathroom cabinets.  I had treatment.  Now it's on the floor where I left it.

Friend is difficult unless you catch me in the right week and I don't try hard because, like every ADD person, I believe the day I am today is the way I am forever.

Planning is not my forte.

I am a very good sleeper.  My cat likes me a lot.

Of course, I'm very happy - this day is not one I was sure I'd see. I never wanted to die although I accept it as a fact of life.  But it seems farther away now.

There were signs I could get lucky:  my cancer did not respond well to all of those chemos and yet it also never spread beyond the liver.  Like me, it was lazy.  When we cut out half my liver to get rid of it, it got mad and grew back, but then it didn't keep growing and spreading.  It grew just enough to say "F you" and then stop.  My blood took the hit of all the treatments, and so my doctor decided to attack it locally again: with SBRT radiation.  At the same time, we started Perjeta which does affect my blood but is a surprise gift.    That one-two punch, though, put me in remission and here I am, five years from the day I heard the fateful words, and now expecting to be where I was at the beginning:

Cancer-free,  yet wondering when it will return.

Unlike those with early stage cancer, the odds are extremely good that it will return - in the 98% range.  But the addition of perjeta makes that number a mystery.  It's too new a drug.  Nobody knows how long it will work, or what it will do to me if I stay on it long-term.  We are in no-mans land here.

Once again, I'm an early adopter.

I have had to redefine myself.  Sadly, I am what I never wanted to be:   I am now a cancer patient above all.  Unfortunately, there is no chance you can have as many appointments, as many interactions with cancer, or a body that is continually assaulted with therapy as I am without it becoming part of you.

So, I am wife, mother, cancer patient and not in that order.  Hopefully, I am the kind of cancer patient who helps others as they experience cancer. So I answer every email I get, every facebook contact and try to be encouraging.   All I can do now is make the best of a bad situation. The idea I had five years ago, that I would experience it and move past it - it seems very unlikely today.

You never know.  Maybe someday I will get to redefine myself again. Life is a continuous process of growth and change. But for today, I am a metastatic cancer patient who has lived five years with the cancer,  and I hope to help others. Maybe that's my ultimate purpose.

 That's the best I can do.

Time to Vote For ME to Speak at SXSW

I have been entered to speak at a panel at SXSW (South by Southwest) which is a huge technology/music/film conference in Austin, Texas.  You might remember, Lady Gaga was the keynote speaker last year, Edward Snowden Skyped in from wherever he is in Russia, and there was a big car accident out front that killed some people.

Yes, that conference, now do you remember?  :)  Little old me, talking about the State of Cancer Care in 2014 at SXSW.  I'll be totally terrified but whatever, I am surviving metastatic cancer, what could be scarier than that?

I will do this in partnership with Healthline.  I'm very excited at the thought.

Unfortunately, I will only be able to do it one way, and that is if you vote that you would like to see me there.

Topics we will cover include:

What challenges do cancer patients face?
What role does patient empowerment play in improving cancer care and the cancer journey experience?
What impact does digital innovation have on cancer care?
What are some of the digital innovations that are making a difference in cancer care and patient empowerment today?
What do we need to change to find a cure?

I am probably going to include a little pink hate and metastatic love in my topic.

To vote, you have to register.  But never fear, SXSW promises that your sign-up information will remain completely confidential.

Start by going here:

https://auth.sxsw.com/users/sign_in

Create your account.

They will send you a confirmation email.  Once you click on confirm, you can vote for me here:

http://panelpicker.sxsw.com/vote/40477

Click the thumbs up icon to the left and drop by and leave me a comment.  Answer some of the above questions in the comments so I can include your viewpoint in my talk.

We are filming a new video next weekend to better explain the topic so they put that video of me discussing chemo side effects in as a placeholder.  Pay it no never mind.  :)

Vote!!  Vote!  Vote early, vote often and get me to Austin!

Stable vs Remission vs NED vs Cure

Every type of cancer has its own terminology; a type of shorthand in which patients use to communicate with each other, and it seems I have accidentally cross-pollinated two common phrases.  The garden is still just as beautiful but the bees buzzing around are slightly confused, so maybe I need to explain.

In Breast Cancer World,  when we are done with treatment and cancer is not visible to any scanning machine, we say we are NED.

In Other Cancer Type World, (like leukemia) the terminology used most often is Remission.

The National Cancer Institute's definition of Remission is, "A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body."

NED, of course, is, "No evidence of disease."  You can't see cancer on scans or in blood, but that doesn't mean it isn't there.

They mean the exact same thing.

Cure means one is restored to health, their disease never to return.

While we are on the subject of definitions, Stable is when your cancer is unchanged from one scan to another.  It is still there, but it hasn't grown or spread.

I'm not sure why breast cancer patients chose the phrase NED to relate to, except that it's fun to say we are "dancing with Ned."   It's not exactly accurate if you think about it, because even if we spend the rest of our lives on the dance floor, there will always be evidence of our disease.  If not physical scars, (and who gets away without those?)  there are the emotional ones (which nobody escapes). To me, NED is hardly accurate, which may be why I relate more to the word remission.

But it has caused a lot of confusion. I have gotten numerous emails and facebook messages from kind people concerned that I am misunderstanding my place in CancerLand.  I'm getting questions like, "If you had terminal cancer, how can it be gone?"  "Why do you think you are in remission instead of NED?" "I don't want you to be worried, but your cancer might come back, so you aren't in remission."

Clearly, people think remission means cure.  And, one very nice women told me her oncologist had suggested a difference between NED and remission and was worried about my optimism,  so now even I am wondering if I am wrong in my word choice.

I might be using the wrong word, but I understand my odds for staying cancer-free and they are certainly long, but not impossible.   According to the California Breast Cancer Research Program,  "At Stage IV, the disease is no longer considered curable, with the exception of the estimated 1-3 percent of patients who, for unknown reasons, experience longterm survival with stable disease or complete remission following treatment."  I am cautious.  I have already experienced the disappointment of thinking I was in that small percentage.  After my liver resection, I rejoiced that I was cancer-free and was sure that it would not come back.

Of course, it did.  That was a pretty shattering disappointment, and I am not going to let it happen again.  Like the old cliche, I hope for the best but am prepared for the worst.

As a women with metastatic cancer - cancer that has already proven that it likes to travel - I have to be realistic.   There may be cancer cells floating through my body right now, some sending out invitations for a gathering, others buying presents and housewarming gifts ready to get together in a new location. In fact, just like when you leave a teenager alone for the weekend, there is a 98% chance of party.  When the festivities get too big, the cops will be called to the area and the bash will be busted.

By being declared NED, or in Remission, I have merely been given the hope, the chance, the fleeting idea that I could be in the 1-3% and be rid of this disease.  My doctor said there was that possibility.

An Oncologist saying something like that to a person with metastatic breast cancer is along the lines of hearing a the Lottery Commissioner say,  "Yes, you won the PowerBall, you can pick up your $400 million dollar check next week."

It's magical.

Whatever word we choose - NED or Remission -  there is the vapor of hope, not only for me, but for everybody with metastatic disease.   Remember, the drug that got me to NED was not even around when I started treatment almost five years ago.  There are many cancer drugs in the process of being developed.

Maybe one day, all of us can use the word we really want to use:  CURE.