AlienNation

wigIt’s 1 a.m. and I can’t sleep.

It’s the steroids.  Tomorrow is Round 2  (I always think of boxing every time I use that phrase.  It’s SO apropos, I should get a pair of boxing gloves to wear when I go in!).  I have to take steroids the day before, during and after the treatment.  They are actually one of my least favorite of the non-favorite parts of of this but they somehow prime the cells to take the chemo better.

Whatever….

So here I am, in  front of my keyboard, looking for some more release.  This has been another week of highs and lows.  The last couple of days I’ve been feeling pretty good physically – almost back to “normal”.  which has been awesome.  Especially since I shaved my head yesterday.   Not sure what I would see with the Big Reveal, I ended up quite relieved and barely shed a tear.  For months I’ve been worried I’d have some weird flat spot or lumps, or would look like a giant embryo.

Praise the BBC Gods (that’s Bald By Chemo, btw…),  it’s actually quite shapely! Yay! My husband even called me beautiful (OK, he’s just a good guy anyway, but still…).  Note to anyone out there facing this: being shaved is FAR less traumatic than running your fingers through your hair and pulling back something that looks like a Tribble. tribbles

When I was finished, off to the wig shop I went and ended up finding a super cute one.  It’s actually in the same style that I’ve been wanting, in a color I’ve worn before.  And thanks to a fabulous tip from one of my favorite Drag Queens, Pandora Boxx, I knew exactly what to do with it to help it look even more natural.  That’s right, Pandora messaged me on her InstaGram account.  We’re BFFs like that. Pandora Boxx

One of the challenges of the week was the letter that came from my employer telling me they were terminating my health insurance at the end of the month.  Sure, I’d be offer the same plan via COBRA, but if you’ve had to deal with COBRA, you know how expensive it can be.  Fortunately, I can get onto my husbands plan.  It’s not too much extra a month in premiums, but I suddenly have an annual deductible to meet.  Like I needed another Change to navigate….Oh, well.  It will get done and from what I hear, with the meds they’re pumping into me, it shouldn’t take too long to meet that deductible.  One drug alone is $10,000 a pop.  Thankfully, for now, we have the money to pay.

What a world we live in, where, right in the middle of a health crises, your employer can legally term your benefits and tell you they are going to have to fill your position.  Sure, when/if I go back, they will put me at the top of the list for any “future vacancies” (uh, I was the only one who did what I did),  but I’m not holding my breath.  That’s just so much legal speak which really means, Girl, you is OUT and when you come back, there won’t be anything for you.  Maybe they’ll hoping I will quit so they don’t have to lay me off.

The irony is, I don’t ever want to work for this company again.  Seriously.  I just want to stay employed so that I can continue to collect State Disability until done with my treatments.  And then?

THEN I want to do what I talked about, and written about here, for ages.  I want a whole new career path.  Something where I can spend my time, talents and energy making a positive impact on the world – and not just on some cold, morally challenged corporate bottom line.  I want to be of SERVICE.   To bring a little light into someone’s darkness, or provide a product or service that helps someone in their every day lives.

I want to do what I love, with people I love doing it with, for the highest good of all of us.

And, most importantly, I want to have FUN and experience JOY while I’m doing it!!

So, this letter is actually a push in the right direction.  Sure, it would have been nice to have the company I’ve worked for for nearly a decade put a little more value on my life, my livelihood, and my contribution to the company.  But I’m not surprised in the least.   We don’t vibrate the same, if you know what I mean.  I’m truly alien there, just trying to keep my space – and my spirit – clear of all the toxicity and drama.  Being an honest and upright person in the midst of ass kissers, double talkers and promise breakers is stressful.

Breast cancer has not only been a wake up call, but a call to action.

Now, all I have to do is figure out what that new life might look like.  Since I still have several months of treatments to go through, and a bunch more healing to accomplish, I’m not ready to start putting out applications.  But I can live my life and see what happens.

And I can DREAM.

Speaking of dreaming, my husband told me that while I was napping the other evening, something quite extraordinary happened outside my bedroom window.  He said that at least a hundred dragonflies swooped in out of nowhere and were swarming around and around.  This is NOT something that happens here, although I did find a dragonfly vortex on my driveway many weeks back.  Oh, how I wish I had been awake to see this!!

The DRAGONFLY has shown up in my life during some other very transformational periods in my life.  I wrote about my conversation with one here in fact.  Reading her words again brings such comfort and assurance.  They ring as true tonight as they did over a decade ago when this happened.  Knowing that a 100 dragonflies were involved this time, well…that only makes me feel even better.

Yes, it’s time to dream.

Release

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I’m so incredibly sad.

It’s not just losing my hair.  I cut it short a couple of days ago, but it’s coming out by the handfuls every time I comb it or even touch it.  The clippers are out and ready to go along with a cute colorful scarf I bought last year, long before I knew I was about to embark on this journey.  So a buzz is in my immediate future, and not the good kind. (The photo above is what I just pulled out from the back of my head in a minute or two while contemplating this post….there would be more if I kept at it….but I’m making a mess here….)

It’s not the sores on my chest or on the roof of my mouth.  It’s not the three days I spent in the hospital earlier this week, or the antibiotics that give me headaches.  I know dodged a bullet by getting help before catching something while all my counts were extremely low, and my time in reverse isolation wasn’t really “difficult”as much as surreal.  Haven’t spent time in a hospital since my youngest was born 28 years ago.

I’m definitely NOT looking forward to it, but it’s not the idea of Round 2 coming up this Friday, or that I haven’t had the “upswing” of a bunch of really good days between rounds that I had hoped to experience.  With 5 rounds to go, maybe I’ll experience that next time.

No, this sadness is all of the above and none of the above….something inclusive and yet nameless that leaves me wanting to just lay down and not move for hours at a time.  For someone like me, someone used to being busy and active and engaged, who went into this deal feeling healthy and vibrant, that’s a little scary.  It’s not like me.  None of this is “like me”.

I haven’t even felt like writing….and I’m barely praying.  “Please, God” happens a lot.

Its almost as if I’m disintegrating right before my very eyes…dissolving….and, I suppose, in a way I am.  I am no longer the woman I was and I’m not yet the woman I will be.  When I look in the mirror, I never know who I’m going to see because I don’t look like “ME”.  Having experienced a Dark Night of the Soul before, my hunch is that I am now entering into a Dark Night of the Body.  Which effects the Soul, wouldn’t it?  The spirit?

I’m doing my best to remain grateful in the midst of a physical shit storm the likes of which I’ve never experienced.  For example, I’m grateful I didn’t puke my guts up after Round 1.  I’m grateful for family and friends that are so very supportive, kind and loving.  And patient!  Especially my husband, who is staying steady even when I swing from snappy to weepy to sleeping and back again.

I’m extremely grateful that I don’t have to work through this ordeal.  Financially we’re okay with my disability checks.

And right now – at this very moment – I am ecstatic for the torrential downpour happening right outside my window.  We’ve had a storm front move into SoCal these last couple of days, and the much needed rain is a BLESSING to my home state.  And for me personally, the dark clouds and the blustering winds and the sheets of water match the firestorm raging on inside of me….cooling me.  Bringing relief and calm and release.

Release.  How many times a day to I pray for release?  Release from the pain.  Release from the funky shit going on with my body.  Release from all the months of treatment still in front of me.  Release from the lethargy.

My friends keep telling me how strong and brave I am…how much courage I’m displaying, and what great attitude I’ve held.  Today, I don’t feel any of those things.  Perhaps it’s just been a really long week filled with some really stressful and traumatic experiences.  Maybe after I shave my head later tonight I will feel some of the “empowerment” I keep hearing about.  Maybe I will have a few better days until Friday.

Maybe.

“One Day My Soul Opened Up”

“One day my soul just opened up
and things started happenin’
things I can’t quite explain
I mean
I cried and cried like never before
I cried tears of ten thousand mothers
I couldn’t even feel anything because
I cried ‘til I was numb.

One day my soul just opened up
I felt this overwhelming pride
What I was proud of
only God knows!
Like the pride of a hundred thousand fathers
basking in the glory of their newborn sons
I was ginnin’ from ear to ear!

One day my soul just opened up
I started laughing
and I laughed for what seemed like forever
wasn’t nothin’ particularly funny goin’ on
but I laughed anyhow
I laughed the joy of a million children playin’
in the mud
I laughed ‘til my sides ached
Oh God!  It felt so good!

One day, my soul just opened up
There were revelations, annihilations, and resolutions
feelings of doubt and betrayal, vengeance and
forgiveness
memories of things I’d seen and done before
of places I’d been, although I didn’t know when
there were lives I’d lived
people I’d loved
battles I’d fought
victories I’d won
and wars I’d lost.

One day, my soul just opened up
and out poured all of the things
I’d been hiding
and denying
and living through
that had just happened moments before.

One day, my soul just opened up
and I decided
I was good and ready!
I was good and ready
to surrender
my life
to God.

So, with my soul wide open,
I sat down
and wrote Her a note
and told her so.”

Gemmia L. Vanzant

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Entering The Rest

My days meander now.
Sure, there’s the occasional appointment to attend to,
or some “chore” that needs to be done.
But in this new found freedom of
unstructured hours that are quickly
turning into weeks
which will, eventually, I suppose,
turn into months,
I find a softness I didn’t know I had
or forgot I had.

It shows up in my mid day nap
or when I suddenly look at the clock
and realize
it’s 1:00 p.m. and I’m still in my jammies.

Juxtapositioned against this softness
is the fact that I’m physically busier now
than I ever was while sitting at a desk
I move, on and off all day long

My movements ebb and flow like the tides.
And my body has found
relaxation in this movement
In the bending and lifting and plucking and walking about
of an ordinary day at home
filled with things that heal
Cooking
Gardening
Walks outside
Home making
Showering and oiling my body with herbal medicines

How gentle my weekdays have become
when I’m home alone
away from the stress and
dysfunction of my workplace

How beautiful the quiet…
How gorgeous the day spent without another sound
except the chirping of birds
or the tea kettle’s whistle
or some distant neighbors lawn mower

I have so much to be grateful for!

It is said that God gives Joy in the Present Moment.
I believe that.
When I don’t think about “what was”
And I stay away from “what might be”
I find a river of Joy
Flowing through  my soul.
And where there is Joy
there is peace
And where there is peace
there is rest.

I’ve come to realize that I don’t have to
be sick or to die
in order to rest.
The heavy labor is over
The burden has been lifted
My job is to make sure
I don’t pick it up again

It is well with my soul.

Broken Open

3 weeks.

It’s hard to believe that’s how long it’s been since my last post.

Here, at the end of Week 3, I am beginning to feel really good.  Any discomfort is manageable (although I miss being able to lay on my tummy).  The bruising is subsiding.  And the incision is closing nicely.

I’m spending my days taking care of myself.  Been getting out for my daily walks again this week, and I spend a lot of time cooking as I experiment with healthy, cancerass-kicking recipes.  My garden is thriving under my now-more-consistent-care, my home is getting mini organizational makeovers, and – if you take the whole “C” word out of the equations – I feel very peaceful and in love with this new softer paced life.

Here I am in that Grace Period between What Was and What Will Be – which, at least initially, involves another surgery one week from today.

This isn’t a bad thing.  I was amazingly relieved to learn that the sentinel nodes that were removed did not contain any cancer cells.  And while the tissue my doc removed was larger than expected, (one tumor was 2mm, the other area 6mm) she was able to get a “clear margin” of 1mm around it all and keep my breast looking very “normal”.  Perky, even.

It’s just that 1.5mm to 2mm is the gold standard where margins are concerned, so Friday she’ll reexcise through the original incision and remove a little more tissue.  Widen the DMZ, so to speak.

And hey – I’m good with that.  For one thing, she’s not looking for something new, praisethebabyJesus.

But more importantly is that this second surgery delayed the chemo timeline and gives me more time to figure out what the HELL I want to do.

This is where my heart is broken open before God.  See, I can face anything if I know that it’s The Divine Plan.  But I gotta KNOW.  I mean, that kind of knowing that gives you peace, even if it means facing the fires of hell.

And in this case, that’s a pretty accurate description.

Once I learned that women were dying in large numbers from what I have without the current treatments available, I’ve not been so quick to throw those treatments out with the Side Effect Ladened bathwater.  Breast Cancer isn’t a one-size-all deal.  It’s not just about “Stages”.  There are a half dozen types of actual cancer pathologies with another handful of characteristics that make up the full diagnosis.  These cover everything from indicators on what the tumors are sensitive to, to genetic risks to aggression numbers.

But.  Right now?  The tumors I had are GONE.  They were successfully removed and when the nodes are clear, there is a very low possibility the cancer has metastasized somewhere else.   So, anything I do from this point is to try to keep it from coming back, and to kill any little floaters that escaped that may….MAY….be somewhere in my body.

Basically, it’s all a fucking crap shoot.

So what is “easier”?  Where are my intentions and prayers and visionings best placed?  To believe for my complete healing and remission by just accepting the surgery and taking my chances?  (Well, along with dietary/lifestyle changes and supplements and whatever else I can think of…)

OR, would my faith be better placed in the recommended treatment plan – a plan that has proven to be very successful –  and just pray to God that I can jump over all the potential issues caused by the 4 treatments themselves?  Each of them – chemotherapy, Herceptin, radiation, and some sort of aromatose inhibitor – is reported to have some pretty icky side effects,  although not everyone experiences them and some are temporary (hair loss, for example).

I’ve learned that many of the potential side effects have to do with the HEART….which is kind of interesting.   I come to feel that with this being in my left breast and all, the cancer metaphysically morphed as a result of heart related issues.  The SOUL kinda heart, not the organ.  Things like betrayals, self sacrificing, over nurturing of others, stress and a deep soul tiredness.

Do I have what it takes to believe that I will be one of  lucky/blessed/graced/fortunate/protected ones 4 times over? Or, will the surgery and my own efforts – with God’s blessing – be enough to keep the wolves at bay?

That is the question that I must answer, and that I carry around me with me every moment of every day.  My hope is that when the time comes when I MUST decide, I will know.

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