Tuesday, May 17, 2016

The Sleeper Must Awaken ...

"Without change, something sleeps inside us, and seldom awakens. The sleeper must awaken." ~ Duke Leto Atreides in DUNE by Frank Herbert
I'm sleeping.

That's what it feels like, this post three of twelve Taxol infusions.  I realized recently that I've not written anything here this month.  My final thoughts on cancer were of my fear of my first Taxol treatment - the unknown.  My final writing was about Robin - her death, her memorial, her loss - and how she still feels present.

Robin's memorial was beautiful.  People gathered in shared emotion, some spoke, many listened, and throughout it all, life seemed surreal.  What a year it has been.  Facing the truth of mortality - your own or that of a loved one - is at once surreal and terrible.  Comforting where the circumstances ensure that continued survival of a loved one means pain and suffering with no complete healing.  I'm 45 years old - prime middle-age (if such a thing exists) - so I'd love nothing more than to ignore mortality.  Most of us do most of the time.

We walk though our days without a thought of death being around the corner.  We make breakfast, drink our coffee, half-listen to the news of the continued horrors of war and famine then jerk in greater recognition of a threat of snow in May.  We scurry to jobs, fret over bills, and wonder what to do next. But so often it seems we are only blurred images of ourselves.  Have you ever had the experience of being fully present in a moment?  Some of you are surely better at this than I am.  I'll find myself sitting - perhaps drinking a coffee - and suddenly feel completely present.  A ladybug crawling up the side of a table outside Starbucks jumps into my consciousness and becomes one of the most substantial things I've seen in a long time.  I remember that moment.  Why did that moment make itself felt? What was different?

Taxol is messing with my reality.  Cancer is messing with my reality.  My focus right now is - and I've been reminded repeatedly that it must be - on getting through treatment, trudging through each day and staying "healthy" (she writes with a grimace).  Healthy means not getting ill on top of the chemotherapy side effects; healthy does NOT mean staying in any form of decent shape it seems.

Right now, chemo demands that I lather feet and hands in Cetaphil Cream to curb damage from the drugs.  My mouth, primarily my tongue, feels foreign, thick and sore.  Not horribly so, just annoyingly so.  I rinse my mouth multiple times a day with a combination of water, baking soda, and salt to curb any sores (thankfully I've had none of those).  I put organic coconut oil on my scars - the 5 inch one under my arm from checking my lymph nodes and the roughly 12 inch winding road scar surrounding Frankeboob - and on top of my bald head.  I have hair that keeps trying to grow, bless it, but it is sparse, course, and/or in patches, which will not do pig, no, not at all so I occasionally shave it.  I was relatively pleased with my head when I first lost my hair. 

Now I just want my hair back.

I want to not feel like Varys from Game of Thrones anymore.

[No offense to the talented Conleth Hill.]   

Perhaps I'd feel differently if the Grand Rapids Comic Con were around the corner.  But it's not.  And I want my hair back.  And energy.  And the ability to walk long distances without putting $&#*ing cream on my feet. 

I'm sleeping.  I'm going through the motions of each day, both amazed and appalled at how quickly time is passing.  Amazed because it means an end to treatment.  Appalled because I wonder where on earth the time has gone.  Probably the same place my body has gone.  My mind, too.  Away. 

I'm in a holding pattern except the hole I have to dig myself out of at the end just keeps getting deeper.  I long for a day that I pick in the future when I'm back to normal - with hair, without my current amount of body fat, with energy - when I can truly celebrate being back.  Being present.  Being awake.  I don't feel like I can set a date for this now because, quite frankly, I don't want to jinx myself. 

The people surrounding me during this time continue to be amazing.  My family, friends, coworkers have repeatedly humbled me with support.  I know what Robin meant when she tried to describe how difficult it was to accept the support.  I'm truly doing nothing more than what I need to do to survive.  We do what we must.  You would, too. 

Chemotherapy for me continues into July.  After that, I'll have six weeks of radiation.  After that, a Dr. Livingston will lift Bride of Frankenboob (my right breast) to look at the same horizon as Frankenboob (what's left of my left).  I'll try desperately (and fail) not to say, "Dr. Livingston(e), I presume?" when I first meet him.  Finally, I'll have a new "base" mammogram taken next January or so.

The new normal.  With changes.  The sleeper must awaken.

And awaken I will.

With non-lopsided boobs. 

And hair.

Lots of hair.  

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