Thursday, April 10, 2014

This Star Won't Go Out - Book Review

Many of you have read John Green's "The Fault in Our Stars" and if you haven't, you should.  It is a remarkable book. Yes, the category is YA but don't let that dissuade you.  There is nothing childish about it. It is a gorgeous, insightful, true book.

The girl who inspired Green was a lovely girl named Esther Earl.  I know she was lovely because I was given her book for my birthday.  I couldn't put it down and finished it last night.

Her book is called, "This Star Won't Go Out."

Esther, nicknamed Star by her family, died of cancer when she was 16. She had lived with it for many years, always knowing the end.

It's a coming of age story, told in her own words,  about a girl with a terminal illness who knew she would never grow up.   Yet in reading the book, you knew who she was and who she would become.  She was a talented writer, artist, and most of all, human being with hopes and dreams.   Like all of us who know our life will be cut short, her dreams were not far into the future.  She didn't dream of marriage, weddings or children.  She focused on her day-to-day life and she didn't think farther than maybe a first kiss or the next convention.   The book consists of her blog posts, her letters to her family, her online posts (she, too, was active in social media - as many of us who don't feel well enough to socialize are.)  Her loving family gathered her writings and posts, put them together with their own thoughts and blog posts of that time, and made a compelling book.

The interesting thing was that I could relate to so much of it despite the 35 year age difference.  The dying experience is universally about accepting loss, but it doesn't really matter what you are going to lose.  It's the same feeling - the same idea of saying good-bye to your future and learning to live, love, and appreciate the moment while you have it.  Esther had never had a romantic relationship and I have almost raised my children, and yet there are so many things she said that I understood on a deep level - things that only a person in our situation can. Minor things, such as needing to sleep and rest all the time even though we seem healthy - which makes us feel lazy and can even irritate our families.  She discusses deeper things, such such as feeling guilty for what we put our families through.  She wonders how they'll do without her, yet somehow believing they'll be fine - not because she thinks they don't love her or she'll  be forgotten, but because she has faith in their resilience. She, like me, understands that life goes on without us and those who love us will continue on.   She's deeply religious, which I am not, yet it is a natural part of her life and makes sense for her and I understand her completely. In the end, we were more alike than different.

She missed so much that I had, boyfriends, marriage, children.  But even more than than what she missed -  she HAD so much.  She had a life well-lived - an excellent life, with people who truly, deeply loved her and whom she loved in return.  That says a lot.  There are many men and women my age or older who cannot say that.  More time would have given her more experiences, but ultimately would not have changed what she had or who she was.  She had done good in the world either way.

She also died well.  Which is more important than you think, and is something many of us hope for.  It is the last thing we can give our families.

Is it sad?  Absolutely.  Get the book and add some tissues.

Uplifting?  Amazingly so.  It defines what a life should be.  She was loving, accepting, giving and flat out remarkable. Not because she was dying but because she lived.  Just the letters she wrote to her family proved she was wise beyond her years - while still loving teenage things like making "smilies."  She made her mark on the world, despite her age.

Her book is not about death.   It is about enduring love.  This one girl made an impact on people and her legacy won't die until they do.  She'll be remembered all their lives.  Who knows, maybe her reach will extend beyond a generation or two. Maybe this book will be taught in a class one day.  Her personality came shining through her words, letters, and silly drawings. Her personality was how to love.

Because she was an online presence, people said similar things about her that they have said about me. We both found those things wonderful, but not necessarily on the mark. I think some of it comes from fear of death.  People believe they would not accept their fate the way we have learned to do,  and those who do know a secret.  I don't feel like an inspiration or anything but a person living through a sad thing.  The truth is, when given no choice you learn acceptance or you live miserably and fearfully.   Esther was handed lousy cards but played them the best she could, even at her tender age.  That is all anybody can do, and it is what most people find they can do.   Now her parents, in finding a way to accept her death and move on are doing the same.

She said it best, so I am just going to quote her from page 313, 20 days before she died and while she was waiting for scans (that turned out to be good - again, it shows how swiftly this disease turns):

"I feel happy that I'm still alive, but I feel kind of shamed that I'm not doing that much with my life.  I feel kind of like I'm fooling people, because you know, in my videos, and in what John Green and all those amazing people have said about me I feel like I am fooling you all, because I'm not always awesome, and I'm not always strong, and I'm not always brave, and you guys should know that, you know?  I mean, I'm not always this perfect person.  I get pissed.   I do stupid things.  I ...get angsty.  I cry.  I hate my cancer.  I judge people.  I yell at my parents.  I ... sometimes wish I'd never gone through this, and then I realize that if it happened it's who I am, and then I get all like "Oh that's just confusing."  But then I sometimes I wish it had never happened, the cancer thing."

Amen, girlfriend.

Her parents have started the Esther Grace Earl Foundation, which provides help for families whose children are diagnosed with cancer.  It is a charity I can't help but support.  When you are making your charitable donation for the year, please keep it in mind.  While I have been very vocal that research is most needed and "awareness" is completely unnecessary and anachronistic, I also believe patient/family support is vital.  Having been on the receiving end, it is an amazing help.  So please include this foundation on your list.

Esther Grace Earl



(Just an unnecessary disclaimer:  Nobody has contacted me from the family or publisher,  and the book was a gift from my (almost) daughter in law so this is a completely independent review.)

Saturday, April 5, 2014

The Ultimate in Contradictions

So today is my birthday.

(Mmmmmm.....cartoon cake)


Thank you!

In case you were wondering, I turn 56.

(And I live in California)

Now, you might think that would make me happy. (Not the California part - the 56 part.)  And you are so right, it does. Often over the past few years, I didn't think I'd make it to this age.  I can't be more grateful I'm here.

Wisely, I've looked in the mirror, seen a sagging face and more wrinkles than in days past, yet I've just smiled and thought,  "Now that I know what it is to touch the edge of life, I don't care about aging."

(No real woman would do this because she'd have to clean the lipstick off the mirror)


True, I don't mind my age.

Also, a lie.

I'm super, super happy at being 56.   I'm also a tad distressed at being 56.

How complicated we human beings are!  How bewildering are our emotions!

(All in ten minutes!)

When I was bald, I couldn't wait for my hair to grow back.

When it grew back grey, I was less than excited.  But I had hair, that's what counts, right?

(At least it wasn't green)


Right.

Unfortunately, because I'm metastatic, I am not always healthy enough to upkeep with color, and by God, I am not going to die with roots.

(Why add more work for the funeral director?)


So grey it stays.

But grey hair makes me look.....56.  Washed out.  Old.  Sort of grandmother-ish.  I want color again.

But I won't.  I am a grandmother.

(Although not this one)


Also not always the most traditional one.

(Pick your reason)

My face.....I'd always thought I might do a little "touch-up" around this age.  (A full facelift costs $9,000, or at least it did five years ago when I'd asked.)  I don't want to look like Joan Rivers or Meg Ryan or any of those legions of sad Hollywood women trying to hold onto their youth forever.

(At this point she's just using superglue trying to hold onto her eyelids forever)


I was never beautiful so I don't have to hang on to lost beauty.

I just don't want to look mad, as I do these days even when I'm feeling perfectly serene.   People will look at me and say, "What's wrong?" when I was thinking about kittens and rainbows.

(Inside I'm smiling)


So, it was going to be one and done - just look refreshed, bring things up so I don't look sad, maybe add the chin that I'd been born without, and that was it. That was the plan.

But 3 years of Stage IV cancer has taught me that your face is not important, your life is.

Oddly,  unimportant or not,  I am still not thrilled at seeing my jowls drooping and the line between my eyebrows deepening.  That space under my eyebrows is hanging so low I can hardly open my eyes.  Why bother to put shadow on the lids since they can't be seen?

(She's pointing to a swollen eye that looks more open than mine naturally)


Truth:  I've been through too much.   I would never do another surgery and submit myself to those risks on purpose.

....Or, would I?

No, because there is a cost/benefit factor, even if the health factor played no role.  Is it worth it to get a facelift when your life expectancy could be as low as 6 months?

I guess not.  Even if I could hear, "Wow, you don't look a day over 40" one last time, or even, "You look so happy, did you see a rainbow or get a puppy?" the worth wouldn't be there.   But it would be nice to hear that one last time.

(Well, maybe not the puppy thing)

Of course, I have to also consider how often other people see me.  Which is almost never.  Even the UPS guy drops off packages and runs from my barking dogs, and although he knocks, he doesn't wait for me to open the door.  Which is a good thing as I'm usually in ratty pajamas being chased by dust bunnies.   Aside from the UPS guy and the folks at my cancer center, I don't really go many places so nobody sees my face to think I'm mad.

("I'll protect my mom from anybody seeing her in PJs! Just come here and let me lick you!")

As an aside, my 66 year old husband got carded when we went out to eat recently.  I know I said I don't go out and it's mostly true - we only ate out because we were visiting the grandbaby.  Since I don't drink I didn't have the opportunity to pretend somebody thought I was under 21. Next time, I'll order a beer, if only to prevent the gloating I dealt with for weeks days.  It might be worth the risk to my liver.

Actually, no it isn't.

Perhaps.....just a little botox?  That only lasts 3 months.  That might be worthwhile.  The line between my eyes will go away and instead of looking mad, I might just look slightly annoyed.

(Nancy Pelosi's botox has left her with a good mix of annoyed and surprised - as has her job.)

Injecting botulism toxin into your face when you don't have much of an immune system - good idea, ya think?

I've done botox before cancer because I have migraines. The migraines had mostly disappeared while sick, one of those wonderful blessings in disguise - because honest to goodness, the pain of a migraine is right up there with childbirth as well as the cancer pain I've had so far.  It would not be fair to have to deal with both at the same time.   But now that I'm in remission, the migraines are back, and my Imitrex use is back to weekly if not more.

Thank you life, for never letting me have any time without pain.  (Maybe I look mad for a real reason.....hmmmm....)

(Yeah, but look at all her glorious hair.)

So, botox ..... I could kill two birds with one stone, right?  Wrinkles and head pain?

Thing is.... I don't want to kill three birds.  Tweet tweet.

(Only pigs should die.  Maybe they are angry because they have cancer too?)

Whatevs. None of that helps the wrinkly neck thing.   Ick.  My cameras are now mounted on the ceiling in case I need to take a selphie.

I guess the point is that now that I'm not spending all my waking hours sleeping, feeling sick, or trying to survive, I am returning to normal.  Which is a beautiful thing.

Normal means planning beyond next week, thinking about the future - and not being thrilled about the side effects from aging.


(Fuck you aging.  Wait, no, that's not right...I love you, aging....I'm so confused!!!)

Truly,  all jokes aside, I'm thrilled about every extra minute I get, whether those minutes show on my skin or not.

Contradiction anyone?  I'll have two.

(Cosmos and Appletinis - as a former bartender we used to call them pussy drinks.... only they are mostly straight booze - another contradiction) 


I'm human. A glorious human with contradictions, weird emotions and not always perfect.

Happy Birthday to me.



At least I don't want a boob job.


(Nope, I'm not showing you boobs)










Monday, March 31, 2014

Dreams come true

There is more than one person's dreams represented in the above photo

When I was first diagnosed with breast cancer, I wanted to read blogs to find out how people actually managed the treatment and the experience of having cancer.  How bad was treatment, and how long until they got over it?  What was it like?  What would hurt, what wouldn't?  Medical information was easy to come by and is always so blandly written. (Cough cough)   I wanted to know how people really felt and what really happened.  

Later, when I was diagnosed with end stage cancer, the question changed - how long do I have?   An unanswerable question but one that everyone who has been diagnosed with terminal disease feels they must know.  Yes, I got my paperwork in order, wrote down my passwords for my family -  but would I see my son graduate? Would I see another birthday?  How long does it take to die from cancer in the liver?  It no longer seemed as important to know how to manage the disease as it was to find out how long I would be able to manage.   

The information was easy to find, or so I thought.  Only 18% of women lived 36 months after their liver mets diagnosis, and median survival is 14 months.   But I also knew that statistics apply to a large group, with many different health conditions, treatments, ages, and other variables that are not relevant to me. It's why my oncologist doesn't guess. Statistics are also old - it takes time to do the studies and time to publish them and by the time they have been linked to enough times to drive them up google's rankings, they are out-of-date.  Newer therapies (like Herceptin and Perjeta) are not counted among them.  

Those newly diagnosed are told not to look at statistics online for a very valid reason - they don't relate to an individual human being.
  
Rebellious, I still wanted to know.  

How long did I have?  {Stamp foot!}

Like my early need to find and read blogs that told of personal experiences, I now wanted to discover real people who died of cancer and how long it took them.  Morbid?  Maybe a little, but it's like telling an ethnic joke - it's okay if you are part of that ethnic group.

I found a very active forum of women who had been diagnosed with end-stage breast cancer.  I set the time on the forum three years in the past and searched those posts for "liver mets." I found and wrote down everybody who was active and who had liver mets, and I followed their stories.  Many had the same treatments I did (SBRT, Herceptin), some had other new therapies, some had a few mets like me, others had many more.  Many were doing fine at that snapshot in time, in treatment or remission.  A few were quite ill.  They were all somewhere along the continuum of cancer treatment. I then clicked on their username to see when their last post was.  Then, I set the time to the current day and looked for those women.

None were left.

None.

Now, of course, that didn't necessarily mean they'd died because they'd stopped posting on a forum.   Like me, many of them could have decided that a forum has no value for them and went on to live their lives forum-less.  But most of us active in social media have taught our family members to make "the" death announcement (mine will be here)  and so I looked for those "last posts." Nearly all the women I'd found had truly died.

It appeared to me, with that small sampling, that 3 years was a long-range goal, inline with what I'd read medically.  2 years was realistic.

Okay, that was settled.  I had two years, three at the outside.  I knew it could be more or less, but that was the average with real people.  But I also had a child who just turned 14, a sophomore in high school, a kid who still needed a mother.  That wasn't an acceptable timeline for me.  I wanted to finish raising him. None of this 2 year stuff -  I needed the full 3 years.  

One of Kubler-Ross's stages of death is bargaining.  Not being religious, I have nobody to bargain with, yet I did it nonetheless.  Only I called it goal-setting.  I was going to do everything possible to live to see my youngest son graduate from high school, three years one month after mets diagnosis and nearly six years after my cancer diagnosis.   I wanted to know what college he'd be attending and I wanted to make his bed in a dorm and do all those things parents have done for generations to settle their kids into college. I wanted to finish my job of raising him.  Even if I couldn't do everything physically that I used to do, I would still be there to offer motherly advice and cheer him on.  

And, I'd know the direction he was headed even if I didn't see the outcome.

It was a very long, unimaginably hard three years.  I had half my liver removed. I did microwave ablation. I did chemo after chemo (seven in all). I survived a terrible bout of c-diff sepsis.  I continue on 3 targeted infusions.   I did SBRT (popularly known as gamma knife).  I had about 50 scans. I followed the latest in treatments to enhance my chance of going the distance. I slept more than I was awake, I took pain meds and rarely left the house except for doctors appointments.  Even if I had to go to his graduation carrying oxygen or in a wheelchair, I was going to be there.

Yesterday, the final college acceptance came in.  May will be my 3rd year anniversary with a mets diagnosis and he graduates this June and enters college in September. Today, barring a catastrophe, I believe my dream has come true.

As the acceptances came in, I kept track of them on my chalkboard.  Above are the colleges my son has been admitted to.  Out of those fantastic opportunities, it seems very likely that his choice will be Caltech, although Harvey Mudd has sent an attractive financial package.  We have not received one from Caltech yet.

I'm so grateful that my wish has come true, that I was here to see where my son's college days will be spent. Knowing he was accepted to schools like Caltech,  Harvey Mudd and some amazing UCs pretty much means his future is assured.  He could mess it up, sure.  But I also know he won't.  

I am also pleased that he will be in California and I'll be able to have him come home for all holidays - it's a short plane ride home from Caltech (or Mudd), and if he surprises me and goes to Berkeley or Davis, just a drive.  Yes, I am planning ahead a little, something I haven't done in a long time.  I don't want to get too confident.  Like on the TV show Survivor, those who feel they are running the show are pretty quickly kicked off.   I am well aware that I'm not running the show.

I will not have to leave this earth worrying about either of my children - both are doing well.   I can't tell you what a good feeling that is.  Yes, there will be the ups and downs of life and I probably won't be there to soothe them or give advice, but I did my main job.  

But that is not all I have to be grateful for:
 
Grandma Ann

My stepdaughter got married during a time when I was quite ill from chemo.  Her wedding was lovely, in a forest, with a big bonfire afterwards.  Travel was hard for me then (even a drive) but no way could we miss it.   I was on some Taxane then, post-cdiff still.  About 83 pounds and mostly bald.  The weather had been predicted to be in the 100s so I had bought a sundress but it turned out to be a cool day in the 60s and so I was freezing, even with a wig.  We went shopping in a charming little town to get me some tights and something warmer for my feet as well as an extra sweater.  Still, even with those things and the coat I'd brought,  I wasn't able to function long in the cold and looking back on the photos, I really did look sick.  During the wedding though,  I was in a peaceful state, loving the friendship and family that surrounded my beautiful stepdaughter on this happy day.  I hated to leave that atmosphere that is not often created - where everybody comes together in harmony and love for the people involved.  Physically though, I was simply not up for it.  After the ceremony and some toasts, I had to go back to the room to warm up and sleep, leaving my husband there to enjoy the bonfire and camaraderie and share in the love expressed by his daughter and new husband.

Then came the announcement that she was pregnant, and so now I had another reason to hang on. It may be presumptuous of me to call myself grandmother as the child is not biologically mine, and I don't think they really think of me as a grandmother, but I do so anyway. The child won't care about blood,  and I already love the little boy fiercely, and who can object to more love for your child?  I didn't know I had another reason to live, but seeing the first progeny of this generation of our big, crazy family is wonderful.  Many people are brought together by this one, small, beautiful being.

I still don't know how long I have.  I'm doing very well, better than I have been for years but there is a pain in my liver that glows like a coal.  It may be surgical remains or may be cancer growing. I can't guess and I no longer understand cues from my body.

One of the things I discovered when I did my cancer stalking was how quickly people died.  They would be posting about their next treatment and hoping it would work, or even how great they felt, or some trip they were planning, or sometimes they''d post, frightened, that they had jumped from remission to having a liver covered with tumors and what should they do?  Then a month later, two, no matter what they'd said - a death announcement. One women died a week after her long-awaited Hawaiian vacation.   The three year mark could still be a reality.

As long as I live until September, I'll have completed my goal.  My son will have graduated, and I will get to make his bed in his dorm room. I will kiss him, wish him luck and hand him the keys to adulthood.

I did the job I was given to do on earth, and raised my children.  I have seen the next generation, whose future is bright because of  two loving, devoted parents and a slew of people who will fill his life with love.  

Of course, I'd like to see my oldest get married, have a baby, see my youngest graduate college. I'd love to see the grandbaby start to walk and talk and run and climb and develop a love for dinosaurs. And, maybe I will.  Maybe I'll continue to beat the odds and be that outlier.  But I've decided I won't do more bargaining or set more goals.  I just won the lottery, I can't expect to win twice.   I am just going to appreciate every brush of the wind on my cheek, every blooming flower, every visit with my grandbaby, every contact from my children, and just LIVE.

I'm not sure why I was so lucky when so many were not.  Many women whose children were younger than mine succumbed to cancer quickly, and I know that they felt as deeply as I did that they wanted to see their children grow up. My friend Sarah, gone now for over 2 years - her babies were just toddlers.  My friend Sandy, her son was 17, the same age as mine. There is definitely an element of survivor's guilt at play in my life.  This disease, it's a terrible crapshoot, a roll of the dice.  We with mets - we are all going to die but who gets the time they wanted and who does not?   With every scan is a new roll, and that next roll can scoop it all away. So far, the dice have been in my favor.  I'm very lucky.  I'm very grateful.

And, now, it looks like I'm the parent of a Techer.  :)  



Or a Mudder:  

Tuesday, March 11, 2014

Thoughts on Life and Health





Recently, a little hummingbird blew off course and smacked into my window.  I have a feeder out back, and I've enjoyed watching two little birds share it over the past year.  I've gotten to know them a bit, so I was quite upset to hear the bang and then see this little guy stunned and hunched on my windowsill, breathing heavily. After googling what to do, I got a dropper, filled it with hummingbird food and placed it on his beak. I also stroked him, trying to warm him.  After five minutes or so, suddenly, he flew upwards, hovering near me for a few seconds as if to say "Thanks," or more likely "Don't freaking touch me again!" and then flew into the tree I knew was his home.  He's been back at my feeder ever since.

I, too, have been smacked hard the past few years.  Cancer, surgeries, years of chemo, sepsis, gamma knife radiation, all left me stunned, splayed out, blinking.  But the hands of my friends and family warmed me and gave me the strength to recover a bit.  I'm now flying up, feeling less stunned, even finding feeders on my own.

I heard a wonderful analogy by an oncologist about metastatic breast cancer treatment.  It is like climbing a mountain with no peak, he said. You have to put one foot in front of the other.  The snow is deep, icy particles are blowing at you, you can't see what is ahead but you must keep trudging along, blinded, step after step, year after year, pain and discomfort your partner. You slog through the white cold, hoping to someday find a resting place and get a break. You suddenly emerge into the sunshine, into remission, into a beautiful meadow where you can rest and warm, recover and nourish yourself, but sooner or later, you will be called to start your climb again. And of course, at some point, your climb will be over and you will be left on the mountain, stilled, eventually covered in snow, like all mountaineers.  

Right now, after 4 1/2 years of trudging, I have found a meadow. I'm resting, with hummingbirds buzzing about, flowers blooming and the grass tickling my legs.  I confess, I want to stay here forever.

It is interesting and amazing that our minds go back to normal so quickly when we feel better.  While I still am administered Herceptin, Perjeta and Zometa, I have not been on an actual chemo drug since July, and I've been recovering ever since.  As much as I accepted my fate, my disease, and my end, that's how quickly I've accepted my returning health.  I never mention cancer anymore, when it used to be a daily topic (and one quite boring for my family, I know.)  The cancer card now seems unfair to play or use as an excuse, and I once again know many people worse off than me, which was not always the case.

Before, I got angry if anybody mentioned making plans with me. It showed, I thought, they didn't understand cancer.  I wasn't able to plan for tomorrow, much less 2 weeks down the road, and why didn't people recognize that? (Those who lived with me understood because they saw what I had to contend with, but those who didn't never quite "got" it.)  There is no way I could know if I would be out of bed the next day, much less in a week.  To the healthy, this doesn't make sense - how much could change in a day? But those of you with serious disease understand.  I was way too sick, I didn't get out of bed half the time, how would I know how I felt in two days time?  I promised nothing - there was no future. There was only today.

Now I am thinking about summer, maybe some minor travel, certainly visits to my as-yet-unborn grandchild, maybe a last vacation before my youngest starts college. I'm thinking about my 20 year wedding anniversary in September,  and the weddings of other family members. I'm thinking how weak I am after years of inactivity and how I need to get stronger to do what I want to do in the future and planning how to accomplish that.

Before, I both did and did not realize how sick I was.  I was in pain, sometimes I spent days asleep without even waking.  My head felt wrapped in cotton and my thinking was fuzzy.  Still, after years of treatment, it felt normal.   I wasn't unhappy - I enjoyed my family, my little cat, watching my hummingbirds, but my life was very diminished.  There was only that minute and nothing else.  Now, I have a freelance writing job because I can keep a deadline again.  I scrapbook and organize my scrapbook room (a never-ending job) and buy product for pages I have planned and don't worry about spending money on something I may not use. I signed up for a 3 month class.  I am feeling well enough to volunteer a little:   I recently helped at Science Olympaid, as I did in that post from 2010.  My son is no longer involved but still, I enjoy doing it and this year I promised I'd be there.

The future is no less illusory than it was before.  I see the doctor on the 12th.  Ominously,  I have some twinges in the liver again, like I did when cancer was growing.   I could have a scan the 14th and hear the 19th that cancer has spread through my liver or is in my lungs or brain.  I could be in treatment again before the month is out, and be gone in 3 months.  That is the way cancer works.   That's what it did to my friend Sandy, who was feeling fine and planning a Canada vacation when she suddenly discovered it in her brain and died a few months later.  That's what it did to many before her.

Or, I could be one of the rare lucky ones, those with metastatic breast cancer who get two years in remission, or four, or even a decade. Why not me? It feels now like it's possible, although the odds remain the same.  It is amazing what being off chemo and feeling good can do to your outlook.

It won't last forever, and I am very aware of that. It may not last a month. But for now...it's wonderful, and I confess, I'm used to the idea of a future again and it will be a huge blow the day I hear that it is pulled out from under me again.  We humans, we fill with hope so easily.

It is simple to imagine I will be given everything I wanted nearly 3 years ago when diagnosed with mets.  I wanted to live to see my son graduate high school, which happens in June.  I wanted to see a grandchild, and my stepdaughter is keeping us waiting as the baby was due a few days ago. I wanted to see my oldest son get a job with a good company that can offer a future, which has happened.   I wanted to know where my youngest son would go to college, which we will discover by April 1st.  Yesterday, the phone rang with his first acceptance - to UC San Diego as a Regent's scholar.  13 more schools to hear from before the decision is made, but now, we know for sure he's going somewhere good.

It's all I could have asked for and it is all coming true.

When I see those things happen, (yes, I said when) I may set more goals.   I have an older son who will hopefully be getting married, and I'd like to see that.  I want my younger son to discover his career in college and come home to tell tales of fun and learning. Maybe take a trip for our anniversary.   I am greedy.  I want more life.

I was prepared to not have it, and now I am prepared to continue on.

Of course, you never know,  I could still get hit by a bus.

Until then, I have to say, this meadow is gorgeous and the mountains I have yet to climb seem very far off. I hope I get to sit here and rest for a good, long while.


Saturday, February 1, 2014

Who's a writer?

Yesterday was my son's 17th birthday.  There have been many, many times over the past four years that I didn't think I'd live to see this birthday, and times when I was right, when I was close to death - yet here I am, and not only that, feeling fantastic.  We were able to give my son a wonderful afternoon and then go out to dinner and surprise him with a nice present.  The best gift was my sister, who lives 600 miles away, came to visit and was able to go to dinner with us.  It was a very nice day.

Of course, no matter how busy you are, if you are me, you check your email/facebook/twitter.  And, mine contained something special, something just for me.

Healthline, apparently sick of me winning their best blog contest and taking their money for free, had asked me to write a (paid) test article for them - if I managed to write it effectively, they would hire me.  The subject was about Triple Negative Breast Cancer and the Five Year Recurrence Rate.  They have slideshows on their site and I was writing one of those, so I had to break up the topic into pieces with certain requirements about readability and citations.  Despite my busy week, with several doctors appointments and a birthday, I managed to turn it in on time.  I was quite nervous about it but I needn't have been:  when I checked my email on my son's birthday I got a glowing review.  In fact, they said they often have to send some back for corrections but not mine.  "You nailed it" was the comment.

You can imagine that made me feel good.  So now, I will be a regular contributing writer to Healthline.  I don't know how "regular" it will be or how much work they will have for me but even a little bit will help me son with school - buy him coffee, a textbook, some pencils - or perhaps I'll even buy some scrapbook stuff for myself.  I now need Heritage papers to redo my mother's photo albums; my sister brought them over and they are in those awful magnetic ones that ruin photos.  She had a lot of family history in them, surprisiingly, so they need to be treated with respect.

So here I am.  Six months ago getting out of bed was a chore and a matter of will.  Today I have an employer.  Breast cancer is a funny disease - you never know how things will turn around.   Will it last forever?  No.  But for now, it's good.

Thursday, January 23, 2014

Fat Envelopes

It's college application time around my house - my son has been working hard on essays, answering questions and all that comes with this time of life.  His last application is done, his final interviews are pending, and now....we wait.

He's worked hard his entire school career; his eye has always been on the prize that is college.  He has impressed me with his ability to achieve goals and his foresight in how best to reach them, qualities I don't possess.   We are proud of him and perhaps I brag to my friends a bit too much about him, and if you are under that umbrella, I'm sorry.  To him, I simply assure him that he's done his best, and that is all he can do. The decision of where he goes next is now in somebody else's hands, and to us, it doesn't matter who says yes and who doesn't.  He is a winner no matter what; we'll love him no matter what happens.

In a way, his application experience is much like my experience with cancer.  I have spent the past four years learning as much as I can, studying path reports, learning medical terminology, reading abstracts, doing everything possible to give myself an advantage with this disease.  I talk with others, learn what the treatment norm is; I've taken medical risks, but when all is said and done, what it all comes down to is the decisions of the medical professionals with whom I have entrusted my life.

In spring, Universities will start sending us letters of rejection and acceptance.  I have heard, not having gone to college myself, that when you get a letter from a college, you are hoping for a thick envelope.  A thin one means they are thanking you but saying no. A big fat letter means they have accepted you and now want you to do more paperwork (and probably write some checks).

Unlike a letter from a university, when you receive a report from an imaging center, you are hoping for few pages.  You want the thin envelope.   In the medical world, brevity is good.   Some of my summary reports have been seven pages long - so long doctors have actually waved them around at me saying "Have you seen how big this is?"  Some have only been two pages.

I've saved them, and look at my four inch binder:



(Yes, I did give up on keeping it and just started throwing papers in there; as a former secretary I'm ashamed.....there's that lack of foresight.)

Despite all I've done to try and control the beast that is cancer - the surgeries, the drugs, the travel, the radiation, the hospitalizations, not to mention the hope expended by me, the prayers by friends, and trusting my doctors and nurses,  I had not yet received a thin letter - until now.

I feel like a student who got into Harvard.

Why? I had an MRI in December. I'm having some mid-section pain, left side, and any time you have cancer and tell your doctor anything like that, you earn time in a machine.   You learn not to tell your doctor about minor things, or things that are brand new,  because you know where you'll end up, and not only do I not want to have even more medical tests, I don't want to cost my insurance company money for no reason.  But this pain has been bothering me for months, and it aches quite badly at times, especially when I eat, despite the fact that I'm on dilaudid, so I finally confessed.

Scanned I was.  I wasn't deeply concerned that cancer had spread, as I have been feeling better, more energetic.  I've been off chemo for months, and I feel like I'm emerging from a dream, like I've climbed a mountain in the fog and my head is now peeking into the sunshine.   When my cancer is active, I get sleepy and experience a lack of interest in activities. Now, I am awake 13-14 hours a day  (a lot for me.) While I'm still on therapy, it is not chemotherapy, and the infused drugs I'm doing (Perjeta, Herceptin, Zometa)  are not difficult ones.  I don't need naps, I feel well enough to get out of the house a little. My last bad episode was 6 weeks ago when I spent a week in bed asleep for who knows what reason. (I didn't get up to even pee, for an entire week!)   I've improved since then.  I am accomplishing things again: scrapbooking, crafting, even organizing the room I do these things.  My head is emerging from the clouds.

My only remaining problem is this pain and my non-existent appetite.   I force myself to eat dinner but would probably not eat at all if a human didn't have to - the pain gets worse on a full stomach.  So, what could be causing this pain?  Was my spleen damaged somehow, or is my colon still having issues from the old c-diff problem? Did the radiation path cross my stomach, damaging it?

Well, we still don't know.  But it isn't cancer - I got the thin letter.

The cancer rejection letter - the kind you want.

My MRI report was the smallest I've ever seen - dare I say it looked like a healthy person's report?  This is it in its entirety:

FINDINGS:  There is a nonspecific periportal edema and enhancement which appears centered about a previously treated segment 8 lesion.  There is no evidence of restricted diffusion.  THE MR appearance on arterial and portal venous phase postcontrast images is normal with increased enhancement only appreciated on delayed images.  This could be post therapeutic reactve changes. No other focal hepatic lesions are evident.   There is no biliary dilation.  The gallbladder is normal. The spleen, pancreas, adrenal glands and kidneys are normal.  There is no abdominal lympadenopathy.  The visualized portions of the gastrointesintestinal tract are normal.

IMPRESSION: Nonspecific edema and delayed enhancement in the periportal region that appears to be centered about the segment 8/right lobe treated lesion.  This is nonspecific but is likely post therapeutic change rather than progressive metastatic disease.  


Do you see how many times they said normal?   Do you see that there is no new cancer anywhere in my body?  Do you see they mention the previously treated lesion, but don't mention that it has changed?  Yes, they said no lesions are "evident" rather than exist, but that's okay.  I never expected it to be gone for good. For now, they see what they believe to be post-radiation changes.

Remission (medicine), the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity.

I am a layman, and I have not talked to a doctor about this.  But it seems to me that the cancer that is there is laying low for a while, maybe a good long while.    Sure, cells could be growing in my liver again, or my brain, or spreading in another area too small to see - in fact, that is likely - there is no cure for metastatic cancer.  However, there is no reason to think that I won't live out this year, and maybe even the one after and the one after that. (Yes, I'm greedy.)  My friend Sandy lived 9 years, my friend Jeanne lived 11 years, I just read an article about a woman on her 11th year and still alive - and they had mets in their organs, not bones (which has a longer prognosis).

Why can't I be like them?  Treatments are so much better than they were back when all these prognostic pronouncements were made, even from when I was diagnosed - as an example, when I started there was no Perjeta.  I've been lucky enough to have progressive doctors who have given me the best of care and an insurance company that approves it.

I had a liver resection, which is rarely done. (Yes, cancer grew back but who knows what would have happened if we had not done it?)  I was the first one in my oncology office to get Perjeta.  I had SBRT (gamma knife).  They are not writing me off.

Why write myself off?

I haven't been this hopeful since I was approved for my resection.

Dare I say that I now think I will be around to see the thin and fat envelopes that come for my son?  Dare I think that I can even set him up in a college dorm room somewhere (assuming he gets at least one fat one) and that I can be a functioning grandmother when my stepdaughter's baby is born, and maybe even go to San Francisco, and not make them always come here?   Maybe I can see him or her grow into a toddler, buy trucks or dolls are any kind of gender neutral toy the child may want.  (It is San Francisco, after all.)  Maybe I can see my grandchild be shy and hide behind mom when I show up, or be outgoing and run to "Grandma!" (or whatever my name will be)  knowing there will be toys.  I don't believe I will be there for the school years, but maybe toddler is not out of reach?

I'm still left with mid-section pain, of course.  I suspect that feeling good has made me move more, which has exacerbated the pain.  It's logical to state that you can't have been through what I've been through medically without some lasting effects on nerves and muscles.  I am still dealing with that long-ago shoulder problem, which I was told would never heal and which so far, has proven true.  I cannot reach over to grab something off my nightstand, I can't sleep on my stomach as it causes muscles in my back to spasm, and I now suspect that maybe the mid-section pain I am having is related to that.  If it's not cancer, if it's not spleen, than it is muscle or nerves.  Maybe cutting out part of my liver or stereotactic radiation damaged nerves or tissue that can't be seen on imaging.  It's hard to say - muscle or nerve - but I do know that I won't be complaining to my doctor about this pain for a while. I get pain meds that help so if it isn't cancer growing, I'll deal with what wreckage is left and be damn happy about it.

In fact, I think the idea of living a full year, something I hadn't dared to imagine since 2011, will cause me to make a New Year's resolution:  loosen up my body, learn some stretching techniques,  get in some sort of sick person healthy shape.  Maybe there is a yoga class for people who have had surgeries and can't use their shoulders or core muscles properly.  Maybe I should just take walks.  Chemo is hard on muscle tone and I have zero, like an old person.  My doctor is insisting that I gain 7 pounds by the next time I see him, so I need to try to eat.  .  Healthy people - people in remission - they eat.  I might take a vacation with my husband.  Maybe I'll write that book everybody nags me to write.

I know, it's crazy.  Most people with end-stage cancer don't get to dream like this. It feels foreign to me now, like I'm doing something wrong.   But....

I got the thin letter.  I got accepted, at least for a short time, into the world of health.

Now we need to wait for my son's big, fat letters.




Tuesday, January 21, 2014

Thank You - and a Recipe

I heard from Healthline and they have declared me the winner of the 2013 Best Blog Contest. I again thank you all from the bottom of my heart.  (The top too, why not?)   Because, it wasn't me who won, I just get the cash!  (Well, actually, my son's future college will.)  It was you, with your support and loyalty, voting every day, who handed me the win.   In return, all I can be is grateful, and I am.  It is very hard to describe the warmth I felt as I saw people rooting for me all over the internet, cheering me on, pushing their networks to vote. Indescribable really.

I realized that however the contest came out,  I was a winner.   I don't want to be maudlin but this is something I am going to remember no matter how sick I get - that there are people out there who have never met me and never will, who are rooting me on.  It is quite an uplifting thought and one that will see me through some hard times to come.

It was a hard-fought race with a lot of technical difficulties (I couldn't even vote for myself using facebook) and I won by a hair at the very last minute, which was very exciting and a bit stressful!  I congratulate Maria's Nutritious and Delicious for going neck-and-neck with me to the bitter end. She was a worthy opponent and I wish her the best.  She has a nice site and great recipes, and I hope you'll check her out, as well as the other contestants, who all deserve to be there.  There are some amazing blogs in that list, and I hope in the coming days, you'll take some time to browse through them.  And, of course, continue keeping up with Healthline as they have articles on a wide variety of health topics.  I often go to them first when I am trying to figure something out.

I promised you all a recipe if I won.  So, below is one I keep on my kitchen wall:



It's not a recipe without chocolate, yes?  :)  

Thanks, my friends.

Back to cancer as usual!  :)