Calm Weather Storms

Have you ever fallen into the perfect sleep on the perfect bed?  Where the sheets are so soft they blur into the edges of your own self?  Where the mattress so comfortable you no longer know where you are in it?  Head at the feet?  Feet to the side?  On your tummy?  On your back?  The room temperature is so perfect you can’t tell if your feet are tucked in or hanging out.

There’s a fog that rolls in at twilight on the Oregon coast that makes that tactile effect visual.  It’s calm and enveloping, relaxing and reassuring in its ability to erase horizons, borders, shorelines and landscapes.

The feeling of dying I had was like that Oregon light with the comfort of that perfect bed.

I was standing in perfect comfort in an indisguishable light, feet resting something between sand, water and air.

And now, with our new treatment plan of Doxil, Xgeva and Neulastra, I feel my feet pushing, again, against a solid surface, my eyes discerning shapes on my horizons.

Moving out of that light space is like pulling myself out of that perfect sleep on that perfect bed.  It’s like moving from silent, nurturing float on buoyant salty waters into a saturated sand that sucks at my sinking weight.

It takes so much effort to walk back onto that shore of the living.

Today…

is day 3 past my Doxil chemo with my Neulasta supplement.   Today I can’t imagine making it until summer.   Today I plan my transition at work and encourage my colleagues to start looking for my replacement.  Today I’m not sure I’ll see Spring.

Today…

is day 7 past my Doxil chemo with my Neulasta supplement.   Death no longer feels like something I stand (float?) in.  I walk along the shore.  I enjoy the view.  I feel the sunlight.

I breath more easily into my ribcage.  Certainly, my liver must be less swollen.  Today I take naps because I want to.  Not because I have to.

Today I get take out pho because it’s fun, not because I can’t stand the idea of cooking.

Or so that’s what I say to myself, today.

Today…

is day 10 past my Doxil chemo with my Neulasta supplement.   Today I can’t imagine making it until summer.   Today I plan my transition at work and encourage my colleagues to start looking for my replacement.  Today I’m not sure I’ll see Spring.

Today standing up too quickly makes me breathless.  I sit down on the toilet (seat closed) to rest while I brush my teeth.

Today…

is day 12 past my Doxil chemo with my Neulasta supplement.    I invite my friends over to help me unpack those final boxes still packed up in the garage because of our remodel last year.  Today I trip over shoes and fall down in the garage.  I yell FUCK FUCK FUCK with a ferocious, energetic wind of pain and surprise.  Today my neuropathy sucks and I am thrilled by the energy I have to be so upset about it.

Today I am an open walled house and my emotions blow through, bouncing against the room corners of my own fears, funneling into my projected grief.  Today I hide from my dear cousin Kerstin’s reach from the East coast.  Today I storm at my spouse and tell him he’d better leave for awhile because I fear for his safety.  Today I blow tears of resentment at my best friends Medora and Janis.

And today they respond by bringing me flowers and chocolate.

Today…

is day 18 past my Doxil chemo and my Neulasta supplement.  Today I finish three projects at work.  I sit and help a student working on a high stakes application but terrified to mention her religion or ethnicity because her family is from one of Trump’s banned countries.  Today I make a difference because I have what she needs, today.

Today…

is day 3 past my Doxil chemo with my Neulasta supplement.   Today I can’t imagine making it until summer.   Today I plan my transition at work and encourage my colleagues to start looking for my replacement.  Today I’m not sure I’ll see Spring.

Today…

is day 7 past my Doxil chemo with my Neulasta supplement.   Death no longer feels like something I stand (float?) in.  I walk along the shore.  I enjoy the view.  I feel the sunlight.

I breath more easily into my ribcage.  Certainly, my liver must be less swollen.  Today I take naps because I want to.  Not because I have to.   Or so I tell myself.

Today my daughter asks for help on an application.  I’m so happy to read her writing.  She’s complex, insightful, focused, analytical, self-aware and honest.  Today I see me, 50 year-old wiser me, in her.

Today I’m hopeful and happy.

And when she says we need to stop at 10pm so she can work on her essay due at midnight, I’m grateful.  My body is screaming for sleep.

Today…

is day 10 past my Doxil chemo with my Neulasta supplement.   Today I can’t imagine making it until summer.

Today one of my best friends suggests planning a big girls’ weekend, maybe to northern CA.  I raise my eyebrows and look at her with a long face.  “What would be your goals?”  I ask.

Today I’m overwhelmed by the idea of effort.

Today…

is day 12 past my Doxil chemo with my Neulasta supplement.   Today I think a trip for the girls sounds like fun.  Maybe something local.  Maybe something that doesn’t bankrupt my family.  We could do this.

Today I take a nap and fall asleep so hard that I forget who I am for a  moment when I wake up.  It makes me wonder if dying just feels like forgetting to wake up.

Today…

is day 18 past my Doxil chemo and my Neulasta supplement.  Today I can’t imagine not living at least another year.   Today I call my lovely aunt and convince her to come visit.  I plan an Easter visit with my soul-sister cousin.  I book a weekend trip to Leavenworth on the train with my darling 12-year old.  Today I book a spa weekend for my husband and I to Sleeping Lady.

Today…

is day 1 of my Doxil chemo with my Neulasta supplement.   Today I ask my oncologist about next treatments.  Y90?  Herceptin/Perjedta and Doxil together?  Today I’m certain that even though there’s a clear wave back up after each wave down, the up never quite makes that original starting point and I’m definitely patterning down.

Today I talk about how that hard lump in my liver, the one I can feel through the skin and under my rib cage, is clearly growing.

Today she says she thinks it’s actually a bit better.  She says we might not need to change treatments at all after the next PET CT.

Yeah.  Ok.  Maybe.

Today I schedule the next PET CT.

Today…

is day 3 past my Doxil chemo with my Neulasta supplement.   Today I can’t imagine making it until summer.   Today I plan my transition at work and encourage my colleagues to start looking for my replacement.  Today I’m not sure I’ll see Spring.

Today…

is day 7 past my Doxil chemo with my Neulasta supplement.   I’m enjoying this as a “good day” and reflecting that I guess I do know what “good days” and “bad days” mean, now.

Today…

is day 8 past my Doxil chemo with my Neulasta supplement.  Today I’m a bit tired.  But honestly, still feeling pretty good.  Today I know I’m supposed to feel overwhelmed with fatigue, but I’m doing OK.  Today my liver feels a bit better.  My lungs a bit less encumbered.

Today I think maybe I’ll squeak some more months out of Doxil.

Today…

is day 10 past my Doxil chemo with my Neulasta supplement.    The housecleaner I scheduled arrives.  A gardner comes and provides a quote.

Today I am supported and loved by my colleagues, who tell me they’ll make this work.  They tell me I’m valuable even if I have to work a bit less.

The dog park is accidently bathed in sunlight today.   It’s a nice break from the persistent grey rains of winter.

Today I travel down to Oregon with my close friend Medora, to see my sister.  I’m happy to see her.  I enjoy her and am so glad for Medora’s help in making the trip.

Today…

is day 11 past my Doxil chemo and my Neulasta supplement.  Today I definitely feel stronger.

And my family feels it.  I harp at my husband.  I cry about what will happen to my children in the future if he doesn’t start nurturing them.  Nurturing us.  Nurturing me.  (And who will nurture him?)

Today I think about what I know I could contribute to our faculty if I still had the energy.  I recognize that even though I love the team carrying forward and admire their wisdom and skill, I can see how my participation, my role, would still be important.  Today I see what I could be adding and I feel a sense of loss.

Today I go through old photos and videos and think about how active I was when my daughter was 12.  I think of how much I brought her, showed her, orchestrated around her.  And I feel for my 12-year old son.   He and I laugh about how he got the wiser parents, the parents who probably do less harm, but they’re a lot more tired and a lot less fun.  His eyes don’t laugh.

Today I start looking farther out onto the horizon.  I plan training workshops for tutors for Spring quarter.  I look for an acceptance letter, a chance to attend the Little Pink Houses program for families living with cancer.  It’s a week of family cancer camp in Key West, FL…way out in June.

Today I start mapping out the summer schedule.  When do Pascale, Simon and Etienne arrive from France and Mayotte?  What should we all do together this summer in August?

Today I think I might see the eclipse.

Today I’m taking my son to see Carrie at Bellevue College and we’ll try reading Stephen King again.  He was my favorite middle school past time.  But I’m thinking it might have been because his characters were so tied into the cultural reality I lived then.  It’s no longer my son’s reality, so his writing might not be as entertaining now.

Today I’m going to try and make French onion soup.  And today, I’ll be really really grateful for the pre-made slow-cooker meals Ramona and Breck bring over.    Because then I can take my nap, walk my dog, play with my son, and still feed us.

And today I realize I still have a full week of “good days” before the next chemo.  So I start wondering what I should do with the next ten “todays.”

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2 thoughts on “Calm Weather Storms”

  1. suzy, as i started reading, my impulse was to send you a link to little pink house, only to read on and find you and your family may be going there. i so hope you will!

    Like

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