Concerning Baldness...and Inside-Out Nightmares

So, I had my head-shaving party on Friday, and now Aaron and I are both bald as eggs.  The reports are in for June, and I will be donating just over $100 to the UICC.  Not so great as I hoped, but not terrible either.

Again, what surprises me, though it probably shouldn't any more, is how wonderful I feel without hair.  Judging from the various facial expressions of those around me, I'm not the only one surprised by this fact.  Some pretend not to notice anything different; some openly stare; some shake their heads; some suddenly appear intensely interested in something else...but my favorites are the ones who break into irrepressible grins.  It seems to me that somehow they understand.  I feel at my best this way...my strongest.  I feel thoroughly myself.


I believe it was Emerson who said: "We acquire the strength we have overcome."  He couldn't have said it better.  Really, in that way, the closer something comes to killing you, the more you have to thank it for.  But only if you can drum up the courage to turn the nightmare inside out.  Perhaps that's a barbarous way to think of it, but it's how I see it.  The more we wallow in our own pain, or relax in our own pleasure, the weaker we become, but if we can turn our tragedies into triumphs and come out laughing, we become the best, strongest, and most honest versions of ourselves.  Maybe that's why I feel at my best this way. It's my inside-out nightmare.


In any case, it feels kind of awesome, especially considering the hot weather we've had recently.  And you don't have to worry about doing your hair in the morning, or using too much shampoo, or getting tangled when you drive with the window down.

An Update (Or Two) And a Princess

I really must apologize (again) for my recent comparative silence on this blog.  Our show on the 10th was a rousing success.  We were only a few tickets away from selling out, and we got a standing ovation.  Pleased?  Yes!  But I'm also going through withdrawals because I can't do it again tomorrow.

Aaron and I have added a new family member (photos below).  His name is Leo, and he claimed my heart the minute I saw him in a bin at the feed store waiting for someone to take him home.  As you can see from the photo on the right, he and Ferdinand are not yet the best of friends, but they are developing a mutual respect.

Thank you so much to everyone who has purchased my book in June, shared my last blog post, or in other ways helped to spread the word about my ten-year celebration plans.  I have not brought in as much as I hoped, but neither have I done as badly as I feared, and there is still the second half of the month to go.  I really am very grateful for everyone's continued support and encouragement.  I really believe in the UICC and what they do, and would be honored to contribute to their cause.  I'll leave you with a speech by Princess Dina Mired of Jordan, whose son had leukemia at the age of two, and who works with the UICC, as well as setting up and directing a cancer care center in Jordan.  A wonderful example of a powerful woman using her position for the greater good.

Celebrating Ten Years in June

This is it.  I've been thinking and planning, and now it's happening.  This month I'm officially celebrating my 10th anniversary of being cancer-free, and for all sales of Ashford reported this month I will be donating 75% of my proceeds to the Union for International Cancer Control (UICC).  


UICC is a global cancer-fighting organization, and they work with smaller member organizations throughout the world, including the American Cancer Society.  I am truly impressed by their scope and the work they have done, particularly with their efforts to provide treatment and pain medication in developing countries.  I am thoroughly aware of the fact that I would not be alive today if I had not had the good fortune to live in a place where treatment was readily available.  Whatever my thoughts on our health care system (and most of you know what those are) I am very grateful for the care I received.  I have been blessed, and I would like to share that.  To learn more about UICC and what they do, follow the nifty link on the upper right side of this page.  Look at their website, sign the declaration, watch some of their videos...


This goes for paperback, Kindle, sales online through Amazon, or sales through a physical bookstore.  For those of you who live near me, Ashford is in stock at Flowery Trail Coffeehouse and Valley Drug in Chewelah, or Coffee and Books in Town Center in Colville.  It is also available by request wherever books are sold, and the Amazon.com link is to the right of this page, right under the UICC link.


For obvious reasons this is a cause which is very dear to me, and I would appreciate any assistance in spreading the word, whether you tell your friends verbally, share this link on your Facebook pages, tweet it, etc...  


I am also planning to shave my head the second week in July, and my sister is coming to cover it in henna tattoos.  Expect pictures.


Thank you all for reading my blog, and for the support you have already given me.  I would have loved to have Violet Shadows ready in time for this, but it was not to be.  Maybe a teaser in July?  Cheers!

A Mishmash of News

I am just home from spending the weekend in Portland.  The daffodils were blooming, and the flowering trees.  Two days of gloriously sunny spring weather, and two days of rainy spring weather.  Balance.  Balance is good.  Yesterday, my first day home, we had a blizzard.


I left my characters in a rather uncomfortable position when I went to Portland, and now I have to jerk myself back out of vacation mode and write them out of it.  I know where I need them to go, but I got out of the right mindset and must work my way back into it with the aid of coffee and solitude.  The poor things need to be rescued.


I made the move recently and joined KDP Select, so Ashford is available now for Amazon Prime members through the Kindle Lending Library, and I will have periodic free promotion days, of which today is the first.  So far today I've given away over five hundred copies for the promotion and Ashford is #7 in free historical fiction.  I'm just pleased that it's getting out to so many people.


We're starting rehearsals next week for our June show, and I've been commissioned to create several costumes for it.  I also have to finish choreographing my solo.  It's the first dance I've choreographed for a show, so I'm rather excited and nervous about that.  Of course, Ann is helping me polish it up.  I wouldn't dream of just throwing it on stage without the sort of polishing only Ann can give.  We'll see how that goes.


I'm planning a summer book promotion to coincide with my ten-year celebration of being cancer-free.  The plan is to donate all proceeds from Kindle sales for a certain time range to the Union for International Cancer Control, http://www.uicc.org/ and then finish it off with a head-shaving party.  I'll post updates on here and on Facebook once I know more details, and I may be asking for help spreading the word, if anyone's interested.


And now...back to the novel!

That Post On The Healthcare System

I realized something today.  I realized that I've been putting off blogging, primarily because I had promised a post on the healthcare system, which I felt unequal to for a number of reasons.  One is a lack of organization, one a distaste for controversy, but primarily I've been avoiding the subject here because it involves going back there, and there is a place I've successfully managed to steer clear of for several years now.


However, I do think what I have to say needs to be said, and luckily it is not up to me to offer the perfect solution to solve all our problems and create a disease and debt-free paradise.  I can only point out the problems as I see them.  Sit back and relax.  This promises to be a longish post.


I was sixteen years old when I was diagnosed with stage three (stage four being worst-case, stage one best) Hodgkins Lymphoma, a cancer of the lymph system.  It came out of nowhere for our family.  Someone later made a remark to my mother, as if it was something she should have done, about how they were "concentrating on prevention" themselves.  Now, my sister and I lived about the healthiest lives possible.  We lived on the side of a mountain, breathed clean air, climbed trees, ran around in fields, not to mention having ballet classes every week.  My mother cooked everything we ate from scratch, we drank soda perhaps once a year.  We were always healthy, and because we were always healthy, when our family couldn't afford health insurance, just about the time I turned sixteen, it didn't seem like a big loss.  I couldn't remember the last time I'd been to the doctor.


My dad was (well, still is) an airborne firefighter.  Not with a silly little helicopter either.  He flies different planes now, but at the time, in fact for the first eighteen years of my life, he flew a WWII bomber (a PBY Catalina for the technically inclined) which had been adapted to carry water.  It was a beautiful plane...but my thoughts on aviation shall be saved for another post.  He was (and is) a hero to many, certainly to those whose homes he saved from the flames.  So much for those who like to imagine that all people who can't afford health insurance are useless layabouts.  Incidentally, both of my parents are also college-educated, intelligent people who don't say "ain't".


So much for the background.  We fell into that larger-than-politicians-like-to-admit category of people who fall through the cracks.  We did not qualify for the state programs, but the cost of conventional health insurance would have drowned us.  We already lived frugal lives as it was, and once I was diagnosed it wouldn't have mattered anyway.  Conventional health insurance companies have a useful little thing they call a "waiting period for pre-existing conditions" which means that, when you sign up for your policy, anything you were diagnosed with when you signed up is not covered for the span of time known as the "waiting period", usually six to nine months.  During that time, you pay your premiums, and they pay nothing.  If we had taken that route, none of my treatments would have been covered, and we would have been paying them premiums on top of my already huge medical bills.  My mother (a true gem among women) spent hours on the phone and online researching our options.  In the end we took the only option that didn't involve us selling everything we owned to pay my medical bills.  My dad took a voluntary pay cut, which put us down to the income bracket where I qualified for the state program.


I want to make it quite clear here and now that I have nothing against the doctors.  I had the most wonderful doctor that anyone could ask for through my whole ordeal, and he fought for me tooth and nail on many occasions.


And now we come to a special pet peeve of mine, called the "amount allowed".  (There really is a euphemism for everything.)  This simply means that when the medical provider bills the insurance company, the insurance company will not pay more than a certain amount.  Then you (assuming you have insurance) pay a percentage of that amount.  I have in my hands an old explanation of benefits from my old insurance company for an office visit a few years ago.  The original charge was $115.  The amount allowed was $37.45.  Of that amount I paid $15 dollars.  If I had not had insurance I would have had to pay $115.  The only people stuck paying the entire bill are the people who have no health insurance and can least afford to pay it.  If you could choose to have no health insurance and just pay $37.45 for that visit, that would be one thing, but the reality is another entirely.  And that is a fairly small bill.  There is a shot they give you the day after you receive chemotherapy, which helps raise your white blood cell count and thus boosts your immune system so that they can keep giving you the chemo.  Because (and I know I've said this before) the whole idea of chemo can be summed up in these words: they're slowly killing you and hoping the cancer dies before you do.  I'm not knocking it. After all, it worked for me.  It just always amazes me that someone thought of it in the first place.  Anyway, that shot, which they give you in the stomach (gross, and painful) sent me into a serious allergic reaction culminating in a blackout, a trip to the ER, a very speedy ambulance ride, and a blood pressure of 45 over 20.  I was the first person on record to react to that shot and I have yet to hear of any other cases.  However, the bill for that shot (not the ambulance ride or the ER or the oxygen, just the shot) was $13,000.  Of course, the amount allowed was much less.


A much more recent experience is that of the dad of a good friend of mine, who recently had a heart attack which led to open-heart surgery and eight days in the hospital.  He had no insurance and his medical bills added up to almost twice the amount of our mortgage.


So yes, there is something horribly wrong with our healthcare system, and it can't be ignored.  Health insurance should not be a for-profit business.  The full weight should not fall on the shoulders of those who can least afford to pay, and that is where it falls.  Not on those who have nothing.  They are covered by federal programs.  It falls on the responsible, hard-working citizens.  Yes, there are people on welfare who abuse the system, or people who lie on their unemployment forms.  My parents were not, are not, those people.  Neither is my friend's dad.  They work hard.  They pay their taxes.  They don't want handouts.  They want their hard work to be enough to pay for the lives of their children.


Whew...there it is.  Done.  Any thoughts, feel free to comment.  To end on a good note, I have just been declared cancer-free for ten years.  This summer: celebratory head-shaving!

A Launch, a Load of Self-Promotion, and a Hedgehog

Yes, it's been a week and a half, and I completely forgot to update my blog concerning the outcome of my book launch, which is doubly bad because I have this URL listed in the front of the book as my website and I hate the thought of people thinking, "oooh, blog" and then finding it stagnant.  Not that they would, necessarily, be thinking, "oooh, blog" but they might, and I would hate for them to be disappointed.  


In any case, the launch went very well.  There was a steady stream of people, and by the end my face hurt from smiling, so I think that would generally indicate success.  Afterwards I went home to collapse on the couch with Kezia while we consumed pizza and Strongbow and watched An Education (great film by the way, based on a memoir) and had a lovely evening.  Since then I've been wrestling with the beast known as Self-Promotion, which does not come naturally at all.  I've known people who were simply genius at it, but I am not one of them.  In a way, the online promotion part is easier.  Those people don't know you.  And Very Old Friends, who've watched you slave over the novels for years and even perhaps read manuscripts...those aren't bad either.  It's the hometown promotion that's the hardest, I find.  Suddenly you're approaching people who, though they don't really know you, per se, have seen you about town and known of you since you were a midget.  I can assure you, I was thoroughly unimpressive as a midget.  Yes, I had fabulous adventures in my head, but who was to know?  I certainly didn't tell them.  Cancer threw me a little more into the public eye, but who wants to be known for being disease-ridden?  Anyway, approaching people who know you in the aforementioned vague way, and saying, essentially, "Hi, I've written a book.  Please buy it," can feel rather odd.  However, I have been gritting my teeth and getting it done, though generally in a less blunt fashion.  The online promotion has slowly been coming along as well, though it's a lot to learn.  There is, in the end, so much that could be done for promotion, with all the resources available, that I find I have to make myself stop, to set it aside and go back to the writing.  After all, the writing is what really counts.  Without it, there would be nothing to promote, not to mention that without it I would turn into a sodden mass.  We write for the same reason we breathe: because without it we would not survive.  Numbers and sales seem petty things then.


I have acquired a new friend recently.  His name is Ferdinand, or Ferdy for short, and he is an African Pygmy Hedgehog, an anniversary gift from my husband.

Nine Years and Counting

Recently the Chewelah golf course played host to a benefit tournament and silent auction for a local high school girl fighting cancer.  Talk about memories.  After nine years there are times when I forget how it felt, but when it comes back it feels like it all happened weeks ago rather than years.  Harder for the parents, siblings and friends in so many ways.  Someday I will write it all into a novel, or a memoir.  Everyone said I should then, but until recently it still seemed too close.  It's odd, but these days it is mostly the good things that I remember: the kindness of friends and family, nurses and doctors; making my oncologist laugh; the warmth of the heated blankets they wrapped around me; the feeling of peace when everything else is gone.  Especially the last.  For a year the future meant nothing.  The moment was everything, all there was.  It was the aftermath that was most difficult in many ways, learning how to plan again, to think of my life as something beyond today.


Of course I remember other things: weakness; nausea; allergic reactions which led to waking up in the ER stuck full of needles.  But these things don't last.  The pain subsides, until all that is left is a weird sense of wonder.  I am alive.  In my more philosophical moments I wonder why, then I realize that why doesn't really matter.  I am here, now.  It's the old lesson, still the same.  Apart from past pains and future worries, here I am.  Now, this moment, always.

Health, Life... and the Lost Elephant's Leg

I had my annual cancer check yesterday and came away with a clean bill of health.  Eight years now, going on nine.  Somehow that makes me feel old in a way turning twenty-five doesn't.  It's weird to go back now.  My oncologist is the same, just as kind, with his cheerful briskness and Indian accent -- only a little greyer.  One nurse is still the same, and one receptionist.  The rest have all changed.  I walk in with my husband and remember being there with my mother and Rhiannon.  The smell doesn't make me sick anymore.  I barely notice it now, that sanitary smell.  For years I couldn't walk into a hospital or doctor's office, or even catch a whiff of my mom's antibacterial hand lotion, without getting nauseous.  Every two weeks I would go into that office and spend five hours in a chair, while a steady stream of poisonous fluid was pumped into me by IV.  Small wonder I developed an aversion to the smell.  Such an odd thing, chemotherapy.  The idea of keeping a person alive by slowly killing them and hoping the thing that was killing them before dies before they do.  Oddly enough, it works better than any other system we've concocted seems to.


It sounds awful, and yes, okay, it was.  But there were good moments too, though it's hard now to explain them.  Rhiannon and I would always try to make the nurses and doctors laugh.  After my hair fell out, Rhiannon shaved her head as well, and the next time we went in she wore a wig and I had a scarf on.  Then when we went into the exam room we switched, and she sat on the table and I put on the wig and sat in the chair.  Then the doctor came in and we got the best double-take ever out of him.


It is weird to go back, but nice too.  I am one of their success stories.  Fun to hear the doctor and the nurse who remembers me tell the newer staff members that I am their poster child.  I am also the reason they take extra precautions, though that is more of a position of infamy than anything else.


There is a shot they give you the day after your treatment, designed to boost your white blood cells and make you more resistant to infection, since chemo really devastates your immune system.  It was fairly new when I was beginning treatments, and all the talk was about how wonderful it was, how it allowed you more of a normal life while you were going through treatments.  Anyway, I got it, and we headed for home.  About an hour later found me being rushed to the ER, mostly unconscious and with plummeting blood pressure.  Nobody had ever heard of anyone reacting to that drug before.  To my knowledge no one else ever has.  I ask, every year, if any other similar things have happened, and the answer is always no... but they religiously keep everyone in the office for a set amount of time after their first shot, just in case.  So that is my legacy.  I had hoped to become famous for some great literary endeavor.  Instead I will go down in history for my weird drug allergies.  Still, I feel a strange sort of (is it pride?) something when I see a television commercial for Neulasta, and hear them mutter very quickly at the end, "In extremely rare cases, a severe allergic reaction may occur as a result of taking Neulasta."


Anyway, going back always gives me a new appreciation for life, for breath, for the energy in my arms and legs, and for them -- for my wonderful doctor and nurses.  It can't be easy to work in such a place, surrounded constantly by death or the threat of it.  They need us, I think, the ones who lived, to remind them why they do it.


Oh, and about the elephant in the title: one of my lucky elephant earrings has lost a leg.  I don't know how, poor thing... but perhaps a three-legged elephant will bring me even more luck.

Remedy for a Bad Day

I'm somewhat ashamed to state that I've been rather grumpy lately, the combined result of a cough which refuses to leave me in peace even after a month and another form rejection which arrived recently.  En route home after work today I realized that this must stop.  Eight years ago I was in the midst of a stint of chemotherapy, had lost my hair and had two life-threatening allergic reactions to the drugs that were supposed to keep my immune system strong.  Yet I remember that being one of the most peaceful times of my life.  Weird, no?  People talk about living for the moment, but you never realize what that means until the moment really is all you have.  Somehow, at sixteen I was able to place my future, my life or my death, in the hands of God, and enjoy what I had.  Shakespeare was right, "the readiness is all".  Life or death, to be ready for either... and when I found out it was to be life, it was almost harder to get used to, because I'd all but forgotten how to plan for the future.  And now I get myself out of sorts because of a cough and the whims of a literary agent I've never met.  Have I forgotten?  Not entirely.  I still enjoy the simple things.  I still weave my life into a fairy tale of my own creation, and if the villains are a little darker, well, the heroes are a little brighter, for what is the measure of a hero if not the strength of the foes he has vanquished.  It is only a little harder sometimes to remember, so I am making a list of good things about today.


1.  The weather.  It's the end of Autumn.  You can feel the approach of snow.  The Mountain Ash berries are so bright they almost glow.  


2.  The patch of Sweet Alysium I found under a hedge on my walk home, still fresh and sweet-smelling after all this cold weather.


3.  My iTunes playlist... an interesting mix of Simon and Garfunkel, Giori, Beats Antique, The Weepies, The Killers, Jeremy Fisher,  Duke Special, John Tams and others, along with selections from Blood Brothers, Phantom of the Opera, and the Buffy the Vampire Slayer musical episode, Once More With Feeling.


4.  My delicious mug of tea, and the slice of birthday cake left over from Aaron's birthday party last night.


5.  Last night's birthday party belongs here too, even if it's not technically part of today.  Good times with great people.


6.  The cough, while still in evidence, did not wake me up at all last night.  Hurrah for a good night's sleep!


7.  My wonderful husband, lovely parents, and excellent sister, not to mention a whole parcel of friends, near and far, who make life interesting at all times.


8.  The new novel, which is finally coming together in my mind.


9.  Elephants!  Even if there aren't any nearby, just the fact that such a creature exists makes me happy.  Same with giraffes.


10.  Ballet class tonight.


11.  The fact that my moody spell seems to have evaporated.