And So It Begins...

Today is my first day of chemotherapy.  Mostly, I’m glad this day has come and we are now turning the tides on the cancer that, until a few hours ago, was growing ominously in my left breast and could have decided to spread in nasty ways.  Of course, I can’t know for sure the cancer cells are breaking down and ceasing their growth until the next round of tests, but I have a good feeling about the treatment.

I’ve never seen anyone receive chemotherapy treatment, so I thought I’d share a little about it for those of you who are as blissfully ignorant as I was.  (And I hope you get to stay that way!)  My day started with a blood draw at 10 am to check my current health.  Going in without a drop of odd chemicals in my body, I was, not surprisingly, very healthy.  Then I met with my doctor, whom I adore, and the nurse who is helping to coordinate my care.  She’s a hoot and likes to use highly technical jargon like “More research means more neat stuff!”  She also gave me my prescription for a cranial prosthesis, a.k.a. a wig. On most days, I’ll just do the blood draw and then head up to the 5^th floor for chemo.

The floor where they are administering the drug infusions (the chemo) has over 50 private rooms, or “bays.”  Today, I’m in #39 with a very sweet nurse named Inna.  I’m lying in a hospital bed connected to the pump through the port in my chest. Josh is reading next to me in a recliner, and the curtain is pulled for privacy.  Other than the pump and the gentle murmur of nurses and patients in other rooms, it’s quiet. I have a warm blanket to cover my legs since I wore a fancy dress and heels today (why not?!) There’s a TV, and down the hall is a “Nourishment Center” stocked with goodies like ginger ale and string cheese. It could be worse. I haven’t decided if I like the term “bay” yet.  Though, it fits since I now have a portside, as my friend Penny quipped about the port implanted in my chest.  So, I guess that makes me the S.S. Blondie Shortcakes hanging out in the bay, anchored on my portside.

Today is a long haul, longer than other days. The first drug infusion started at 2:45 pm.  It’s now 7 pm and we still have about 2 hours to go.  Most infusion periods will only be about 3-4 hours instead of 6.  Today was also an anomaly in that I was given drugs like Benadryl to neutralize allergic reactions.  That knocked me out at first and I asked Josh to take my computer away so that I didn’t accidentally send incoherent emails to my clients.  I think I’m coherent now, though looking at the earlier paragraph, I noticed I did write something about S.S. Blondie Shortcakes, so there might still be a touch of Benadryl in my system.

So far, it’s not bad.  My body seems to be reacting well.  It’s somewhat surreal and a little humiliating to have to wheel my infusion pump with me to use the restroom, but otherwise I’m comfortable. After we go home tonight, all we can do is wait for side effects to pop up over the course of the next few days.  Maybe nothing!  Or maybe a lot of things.  We’ll see. Treatments will be every week for the first 12 weeks, then every other week for the remaining 8 weeks, for a total of 16 treatments.

I was very anxious about today, but so many people texted, emailed, and FB messaged that I felt very loved.  I saw a lot of friends over the last weekend and soaked up love that way, too. Thank you. I am also carried by the wonderful news that I am now an auntie.  My little niece, Ivy Ann, was born two days ago, a healthy 7 lb 13 oz bundle of love.  I’m so happy for my bro- and sis-in-law, and for our whole family. Life goes on…

My niece, Ivy Ann, after only a few hours in this big, bright world of ours

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.