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Tuesday, May 20, 2014

Half full...

Apparently, it is true: each round of chemo is, as one friend put it, a bit harder to climb out of. She demonstrated this by grasping and clawing the air above her, as if pulling herself out of an abyss. I appreciate drama; I study drama. Her enactment turns out to be maddeningly real for me this time.

Staying calm when I feel horrendous is always the hardest part. I am a knee jerk catastrophiser, as the men who live with me would no doubt attest to. When something is wrong, everything is wrong: we are going to the poor house, someone who needs to study and practice more won't get into college, which I wouldn't be able to pay for anyway because of bad planning and profligate waste, plus we are wrecking the environment. And the house smells like dogs.

Meanwhile, the real problem is that I feel like a bus hit me, and my brain is foggy and doesn't snap to when I need it, and nothing, but nothing tastes good or even edible. There is pain all over, except in my mouth, which feels post-dental, Novocaine-wearing-off numb, and my stomach lurches around like a fighting drunk. The exhaustion and muscle weakness sneaks in, resisting my resistance. Used to being physically strong, capable, professional, independent, I buckle in frustration at trying to finish a task that would have been a doddle pre-chemo. Yet the tasks keep coming; work is non-negotiable.

I know this won't last, I know I will get through this, I know it is worth it, I know only the strong are given such hard times - all the things people have been telling me over the months this has been happening. The kindness of so many, especially my men here, soothes and heals me. My cup is half full; three out of six rounds done and dusted. But I would like the coffee in the cup to taste like coffee again.


Tuesday, May 13, 2014

Phantom Hair Syndrome...

Last night, while climbing into bed, I reached back to pull the black elastic off of my ponytail, so it wouldn't bother me in the night, as I've done so many times in my life.

The problem was, none of it was there: the hair, the ponytail, the elastic.

Maybe that's why last night I had the first bald dream - in my dream, my baldness played a feature role. Or maybe because I had gone to an all day meeting with some people I know, who knew me with hair, as well as some new people, who have no frame of Cheryl-with-hair reference. One person I had spent two days with last year had trouble placing me. Then the look on her face went from confusion, to surprise, to embarrassment in about three seconds. I noted that she looked more tired - older and worn; I'm sure the look on my face mirrored hers.

Another friend, who had not seen me in a few months, hugged me and said, "Last time I saw you, you weren't so....bald!"  His warmth and frankness were better than averted eyes.

At my son's school concert, reactions were a bit similar: non-recognition, surprise, but I also scared a few small children, who blatantly stared. I'm embarrassed to admit enjoying that suspicious look young kids get when they are puzzling out "what is this and why is it different from normal?" Dads can be bald; a bald mom is seriously fishy. The honesty of unsocialization.

Phantom Hair Syndrome has happened before: I reach back to push my hair off my neck, or up to brush it out of my eyes, and find air. Disconcerting, but not all that weird. I'm adapting. My subconscious sometimes pushes up a message to my conscious mind that I should cover my head - bald is somehow shameful. Thinking of the ways shaving someone's head is used to humiliate them,  I remind myself there is no shame here, no humiliation, merely self-care and healing.

Maybe I make some people uncomfortable with the reality of cancer treatment, part schadenfreude, part fear. If so, okay - we all need reminders that humans come in a fragile vessel, and life is tennous regardless of what we tell ourselves.

And, wow, it is SO much cooler now that the summer heat is kicking in! I may shave my head every summer from now on.



Sunday, May 11, 2014

The divine ordinary...

It is Mother's Day. Before I became a mother, in spite of trying, when I never thought I would be, this was a very hard day each year. My delusions of being a mother were all wrong, but I clung to them - how would I know?

Now I've been a mother for fourteen years and nearly nine months. As a single mother for fourteen years and four months, Mother's Day was somewhat optional. Sometimes I'd make a fuss, and sometimes I wouldn't. Like last year - I made the Love Child walk the Canal Path with me. With no one to prompt him to do things, they didn't always happen - no one saying "what should we do for Mom?". Two years ago, he got up early and poured boiling water into the French press for coffee; we ended up at his first ER visit. Like I said, somewhat optional. 

So now I have cancer (you probably heard about that if you are reading this) and it's Mother's Day. I have had a divine ordinary day. This year, the Love Child gave me flowers he picked (I'm not asking where) and posted funny stuff on my wall: http://youtu.be/JG1_393MvaQ. It is the end of the semester; I've graded papers. I've procrastinated grading by posting too much in Facebook. I've done piles of laundry and bought dog food. I've spoken to my mother-in-law, to thank her for having dear husband, and my mother, who is out on the sailboat. Both husband and I marvel that we have both mothers, both parents, still married, at our age - our children don't. (Well, they have us alive, but not married to their parent.)

Divine ordinary makes me divinely happy. Cancer makes everything dramatic and uncertain, a whole new, unknown territory unchosen to travel, and many days I succumb to worry and uncertainty, and freak out. I'd venture to guess that a day of ordinary happiness is probably what most cancer patients want and need. So I'm grateful.  

Saturday, May 3, 2014

Not even now...

Okay, the post about Hitting Pause...?  I lied. I admit it. Chalk it up to wishful thinking. The minute I believe the post-chemo super crud is abating, I tear around resuming and inventing tasks and projects for home and work. Making up for lost time.

Today, dear husband and I walked up the sunny side of the street, on our way to the farmers market and our favorite shop, Olde Towne Butcher. Cooking projects top my list when my taste buds show glimmers of returning.

We passed a doorway where a young man stood half in, half out. He puffed on a blue enamel pen-like thing, and a tiny cloud of white mist lingered. Dear husband explained it as we walked on: a marijuana vaporizer. I smelled nothing, but as he described it, I wouldn't - everything smokey disappears.

An hour later, on our way back, laden with foodstuffs, I looked over at the same house and saw the young man lounging on the narrow porch, on a folding chaise, just listening to some Beatles wafting out through the open door. No book, no computer - not even a smart phone. Just chillin', enjoying some happy.

My envy was wide and deep. Not for the high - the few times pot has been in my vicinity, I've wandered off; it isn't for me. It was seeing someone able to wake up on a Saturday, kick back, be so intentional about enjoying doing nothing.  I wanted to wander in.

That kind of permission-giving, the kind that says "go right ahead and joyfully do nothing," doesn't live here in my head, not even now that it's bald.

Thursday, May 1, 2014

Chemo patient walks into a bar...

More and more, I'm finding humor allows me to deal with what is happening in my life. When I feel absolutely disgusting from the toxins pumped into me, somehow the absurdity blooms, and the humor is there, ripe for the picking. When I begin feeling better, and have to get back to the quotidian, I find even more to chuckle, guffaw, chortle, and snicker about.

I feel almost shameful about this reaction; it's a bit like being in 7th grade gym class, desperately not wanting to be there, but enjoying the potential for snark in every silly thing being required (you may not have hated gym as much as I did, but you must have known not everyone was having fun dribbling).  It would be more proper to take it all seriously; it's a serious illness and treatment. Much of it is hideous. And yet, wow. Funny.  

Maybe it began when the surgeon told me about putting this port in me, under my skin. It makes it possible to pump powerful drugs into my jugular vein. Or is it my carotid artery? I am a woman who has only fainted twice, both times when someone described their medical procedure. The fact that I could listen to her tell me about putting a bit of technology under my skin, and into my vein/artery, and yet not flop over and require those smelling salts taped up in every examining room means I am seeing the wacky in all of this. I suppose the best description is in David Byrne/Talking Heads song, "Once In a Lifetime":  how did I get here?!?  

I have found myself in another part of the world.