Just the Facts Ma'am: Cancer Update 8/20/14

I’m writing this waiting to go into surgery to put a port in my chest, so this is just a quick update...

STAGING: My doctor has not officially staged the cancer yet, but we did receive some good news this week.  Friday’s PET/CT scan didn’t show cancer anywhere else in my body. Woohoo!  That means it’s confined to my left breast and the lymph nodes near my breast and hasn’t metastasized.  Such a relief.

TREATMENT: I’m getting a port today and I’m scheduled to start chemotherapy on August 26, ironically the same day that my little niece is due to be born.  It’s nice to have something wonderful to look forward to in the midst of all of this!  As far as my ongoing chemo schedule, I won’t know until the screening is complete for the research trial.  It will either be once per week or once every three weeks, likely on Thursday afternoons.

HOW I’M DEALING: This whole cancer thing is pretty stressful, to be sure.  However, I’ve been getting lots of love and support and that helps tremendously.  I also decided to get a tattoo: my first one (other than the small friendship dot on my hand from my high school days). It’s a big, beautiful Dungeoness crab who sits on the back of my neck, poised to attack the stupid cancer cells who are infiltrating my otherwise healthy body.  The crab means many things – the Latin for crab is “cancer” so it makes me feel like I’m fighting fire with fire.  I specifically chose a female crab because when I’ve pulled them from traps, the females are vicious.  They are defenders of their species, and they won’t back down for anything.  They also hold a special meaning for me and my family, thanks to my wonderful in-laws.  So, below is a poem I wrote a couple of years ago and a photo of my new tattoo.  I'm ready to win this fight!!!

Bounty

The world is still, quiet

And we are gently rocking

Above and around it is blue: mountains and sky

            And white: snowcaps and jet streams

We are far from shore and farther from the city

Waters of jade and emerald curl around our boat

            Dark, opaque, lifeless

                        But that is a deception.

Wedged between water and sky, we could believe

            We are the only creatures enjoying the pleasures of a sunny day.

Yet even as the motor roars to life

            Even as we weave rainbows in our wake

We are conscious that the salt we breathe and collect on our faces

            Is only borrowed.

Below us are whole civilizations

            Darting, swimming

                        Scampering across rocks

                                    Sliding across sand

            Speckled sanddabs, quillback rockfish

                        Harbor seals, urchins

                                    Limpets, mussels, seaperch and sharks.

We know this because as we lift the baskets from the seafloor

To reveal Dungies in our traps

            Evidence of the other world clings to our ropes and pots:

                        Magenta jellyfish tentacles

                        Chartreuse eelgrass and kelp

                        Sunflower seastars of tangerine and plum.

So much life hauled to our boat

Like the Salish who began this sea harvest long ago

Back to our ancestors

            On the sundrenched shores of the Mediterranean

            On the frigid waters of the North Sea

Pull by pull

            The wet rope coils at our feet

            Until we bring the disoriented creatures to the surface

                        Measure their size

                        Wrestle them as they claw

                        Determine who is worthy of coming home.

I see their tiny eyes watching us

            We are not new foe

            We have met over miles

                        Over centuries

                                    Over generations

Later, we will gorge on tangled berries

            We will light a fire

                        We will drink wine

                                    We will watch the stars above the lake

            Our bellies full

            Our hearts warm

                        And our limbs ready for sleep.

As I look to the distant shore while my son sleeps safely in his nonna’s arms

I know

            This food

                        This family

                                    This love

                                                Will sustain us long after

                                                            Our hard shells are thrown spinning

                                                                                                            Back to sea.

Joy Johnston

July 9, 2012

Just the Facts Ma’am: Cancer Update 8/11/14

Since so many wonderful people in my life are inquiring about what’s going on, from time to time I think I’ll skip the prose and just list the current progress.  Here’s the scoop as of 8/11/14:

CANCER TYPE: The type of breast cancer that I have has been identified as “HER2-positive” which means it is an aggressive form of cancer, but they know how to treat it. Quick synopsis here.  The stage of cancer has not been assigned yet because we are awaiting results from some of the recent tests.  

TREATMENT: I will be doing 20 weeks of chemotherapy, followed by surgery to remove at least one breast, followed by 6 weeks of radiation.  Six months after radiation treatment concludes, I might be going through reconstructive surgery (see earlier post “The Tale of Big Mountain and Titsy”).

CURRENT STATUS: I’m currently undergoing several tests, partly to establish baseline health before undergoing chemotherapy.  I’m also in the screening process to participate in a clinical trial that looks very positive for treating this type of cancer.  Once we know if I’m in the trial, that will determine my chemo schedule.  I’m scheduled for surgery to have a port put into my chest next week. I feel incredibly healthy at the moment, except that I’m having trouble sleeping (a lot on my mind!) and my biopsy sites are still sore.

FUN STUFF: This week I'm doing a photo shoot with an amazing photographer who photographs dancers all over the world.  It has been arranged for months, but now takes on a very special meaning!  Also, because it is fairly certain I will lose my hair, I have started ordering wigs.  My first one should arrive in a few days – a sassy blonde bob!  Stay tuned!

HOW YOU CAN HELP: Thank you for all of the kind messages and nice cards…keep ‘em coming!  As you can imagine, this is a tough time for my whole family.  We know it will be okay in the end, but there’s a long, scary road ahead.  I wish I knew more about what I need at this time, but this is all new me, too.  There are some great articles and resources out there if you're interested in ideas. Here’s one that I like: How to Support Someone Fighting Breast Cancer.  

Mostly, thank you for being patient with me.  This whole cancer thing is taking up a lot of time and brain capacity, and in addition to caring for two small children and running two businesses, I sometimes don’t have the time to respond to everyone as thoughtfully as I would like.  But please know that your messages are getting to me…and they mean a lot.

One of the reasons this will all be worthwhile in the end.

The Tale of Big Mountain and Titsy

Let me introduce you to my two bosom buddies.  Big Mountain is a hefty, triple D gal.  Very productive and formerly perky, age, nursing and gravity and have weakened her integrity.  We’re still good friends, but she can be a bit of burden.  Titsy, on the other hand, is pure trouble.  A more modestly-sized, D girl, she caused me problems as a teenager and more recently was pretty lazy about feeding my two kids.  It is Titsy, my left breast, who has cancer and even though she’s a handful, I’ll miss her.

As a short, curvy girl, my generous boobs and long blonde hair have always been a source of pride.  Some women are born with lovely long legs, lithe and delicate arms, high cheekbones, or gorgeous skin.  For me, I have always been grateful that despite my short build, at least I was buxom and had pretty hair.  The irony of cancer is that I’ll lose both my hair and my bustiness.

Two common comments that I hear when talking to my friends and family about my recent diagnosis is “At least your hair will grow back” and “You can always have reconstruction.”  These comments come from a good and kind place.  They want to see hope in a scary situation and want to impart that hope to me.  I appreciate their love, support and concern.  However, in my stressed and probably overly sensitive state right now, it’s hard not to hear it as slightly dismissive of what I’m going through.  Yes, hair will grow back and reconstruction is an option.  But it’s not that simple.

Take my hair, for example.  Except for infancy and the two times in my life that I’ve cut my hair (and immediately regretted it), I’ve had long hair my whole life.  My sister and I both grew up with hair so long we could sit on it as little girls.  My mom lovingly cared for it, putting it in cute ponytails and braid loops and on special occasions, she would put it up in curlers overnight so we would wake up with cascades of blonde curls.  Much later, in my early thirties, I experimented with dying my hair dark to look more like a “real” belly dancer, whatever that means. But I went back to blonde.  I’m mostly Swedish, and somehow blonde just suits me.  Keeping it long makes me feel extra pretty when I fix it up for dates with my husband, I love the way it moves when I dance, and I especially love the way my daughter curls her fat baby fingers into my hair and nuzzles into my neck when she needs comforting.. I’m dreading losing my hair and being left with a bare, lumpy skull.  My hair will grow back, but my hair is fine and grows slowly. At my typical rate of growth of ¼ inch a month, it will take 6 years until it will be back to the length it is now.

Then, there’s my rack.  It’s true that reconstruction is an option, but it will be complicated by radiation treatment and the fact that I’m losing Titsy, not Big Mountain.  Because of radiation, it will not be an option to have an artificial implant such as saline or silicone.  Failure rates are really high.  So, the only option is to reconstruct my left breast with my own flesh.  This also sounds deceptively fabulous: breast augmentation AND a tummy tuck! Amazing!  However, the surgery is typically 10-12 hours and could be complicated by the fact that I had a C-section with my first child.  I’ll most certainly have to take Big Mountain down a few notches, and it doesn’t sound like she can be a “donor” to rebuilding Titsy.  In short, reconstruction is a long and not very fun road, and that’s after 20 weeks of chemo, a modified radical mastectomy, six weeks of radiation, and a minimum of 6 months of recovery before any reconstruction can start.

I would say that I will forgive those who make the comments about hair growing back and reconstruction, but there is nothing to forgive.  I know it comes from a good place in their hearts and that they mean no harm. However, I hope they will forgive me if I have my own little pity party to mourn the loss of my hair and my old pal Titsy.  Then, when the pity party is over, I’ll move on and simply be grateful to be alive.

In my younger, pre-mom years, circa 2002 or 2003.

The Cleopatra Wig in My Future

It’s August: the one month I take off from teaching each year to enjoy my family and the sun, and to replenish those creative juices.  It’s also the time that I start planning for my students’ next dance season that culminates in our annual Belly Dance Spectacular in May and the Mediterranean Fantasy Festival in July.  This year, I’m cooking up something that has me prickling with excitement.  Starting in the fall, we’re going totally ancient Egypt, baby.  We’ll be immersing ourselves in the history, the art, the women and the goddesses in all of their iconic glory.  Is there a connection to modern Egyptian belly dance? I don’t know, but that’s what we’re going to find out.  By May, not only will we have fabulous new dances and costumes, we will know a little more about our history as human beings.

I’m excited about the ancient Egyptian direction for another reason: I’m considering including Cleopatra wigs with our troupe costumes. It’s partly selfish on my part since I’m about to lose my hair.

Exactly one hour before our last troupe practice for the summer, I learned I have breast cancer.  Two strawberry-sized lumps that had surfaced when breastfeeding my now nine-month old baby girl turned out to be cancerous. In a couple of weeks, I will start chemotherapy, followed by surgery and then radiation.  Fortunately, it looks like I’ll be done with treatment before our May show, and in time to wear a Cleopatra wig.

I have decided to anchor my cancer story within my dance life for several reasons.  For one, I’d rather keep what I am going through separate from the PR firm that I run in my non-dance life. I will share what I need to with my clients, but they certainly don’t need to know every detail.  My main reason, however, is I feel in my heart that my dance community will be a source of strength.  Over my 20 years as a belly dancer, I’ve found the dance community to be endlessly supportive, overwhelmingly loving, and tirelessly life-affirming. 

I have a lot to live for.  I have a wonderful husband, two sweet little children, truly amazing friends, a supportive family and a large and loving extended family through dance.  These next few months aren’t exactly going to be a picnic, but prospects look good.  I trust my doctors at Seattle Cancer Care Alliance, I believe in the path we are taking, and they are confident that I’m going to kick this thing and go on to live a long and happy life.  Of course, the happy part is up to me, but thanks to my friends, family and dance community, happiness is well within my reach.

To get updates on how things are going with the big “C,” you can follow this blog.

Information about classes and shows is available on my website: www.AmiraBellyDanceSeattle.com

And, if you’re curious about ancient Egypt stuff, here’s some inspiration: http://www.pinterest.com/amirabellydance/cleopatras-closet/