It’s All Good

wp-1490161060491.jpg

On Tuesday, lifting my body out of sleep was like pulling a thick wad of sticky taffy off of a sore tooth.   Each step pulled.  The ascent up the stairs necessitated a brief head-in-crossed-arms lean on the kitchen counter.

It’s a “good week” cancerly speaking.  It’s the third week in my three week Doxil chemo cycle, the week I’m more apt to have energy.

But yesterday was my PET CT scan fasting day and this morning I’m out of gas.

At the hospital, I’m sorely tempted to stop and rest in a Starbuck’s chair on my way to Imaging.  These chairs are less than 100 feet from the imaging entrance.  After the scan, I decide I really need to eat before trying to drive back home.  And while I wait in line at Starbuck’s, I wonder why they don’t have benches where we-of-the-weak-kneed-desiring-coffee-and-croissants can sit and rest while our lattes are brewed.

One of my soul-sisters, Michelle Andersen, is coming over for lunch today.  She calls me while I sit with my latte and digest my croissant.  “Want to meet now?  I’m done early.”

“Sure!  I’ll be back in 20 minutes.”

I’m thinking, “It will be OK.  I don’t have to talk.  Michelle can do the story telling.”

One digested croissant, a latte and a quick pain med and I’m good to go.

I’m so talkative Michelle can barely get a word in edgewise.

It’s a delightful morning where the spaces of time, context and geography that have separated us so often melt away.  We’re as close as two young international students in Germany, cleaning houses for food money and living off of rice, chocolate, cheap champagne, and ice cream.

When she leaves to pick up her kids from school, I’m so happy.  This is a good moment.  This is a good day.

On Thursday, I’m having a good day.  I wake up feeling well rested, right before the alarm goes off.  My empty stomach is calm, so I eat and drink whatever pleases me for breakfast.  At work I’m focused and efficient.  I’m able to write up proposals and draft some training curriculum with ease.  I feel the benefit of my experience.  I have the answers the tutors need that morning.  I’m able to jump in and help students as we get busy.  When I leave my shift, I pick up my dog and we go to the dog park to play.  I throw the ball way out onto the lake and I feed the dog French fries as a treat.

That dog will do anything for a  French fry.

Today is a good day.

On Saturday I feel good.  I spent most of Friday napping, so I’m the parent in the best shape to get up at 5am and ensure our daughter is up and ready for her Robotics tournament.  She was, of course, up and ready before my alarm went off.

I come back and crawl back into the warm bed with my spouse.  We sleep another three hours and then make love in the quiet of our morning house.

I run errands.  Costco is a breeze.

I arrange playdates and Paul spends very little time on any screens.   It’s a good day.

Friday Paul and I were supposed to take the train to Leavenworth, a crazy overpriced German looking tourist trap village in the mountains near Seattle.   We were going for the train experience.  But the train was delayed 12 hours.  It’s the reason I had time to take so many naps that day.  We hung around at home and hoped the train would run the next day on schedule.  We both wasted too much time on our screens.   I felt pretty good, cancerly speaking.  But Friday wasn’t such a good day.

Saturday evening Paul and I wait for our train departure.   It’s delayed a mere three hours, but because the coach seats were sold out, we’ve booked a “roommette” so we’re kind of excited to get time in the bunks.

And then I see the letter.  The rejection to my Doxil treatment from my insurance company.  My stomach turns and I feel my anxiety rise.   They are arguing, again, that the heart-poisonous nausea inducing bald-making Adriamycin is good enough for me.  I don’t “need” the gentle (expensive) stuff.

I’m getting angry.  I’m tired.  I’m frustrated.   Internally, I’m getting a bit stormy and dramatic.  Should I switch to Adriamycin, suffer and then sue?  Should I switch treatments all-together and have my friends and family sue the company after I’m gone?  This is one of the last treatments we think might be effective.

Today is starting to feel like a bad day.

But then my PET CT results come in and there’s progression.  Yes.  My cancer is spreading.

I’m relieved.  There’s no need to fight the insurance company, to wonder “what if?”  and “what then?”

Things are pretty clear.  Doxil isn’t working.

So I call Amtrak and I order a sleeping car room for the way back, as well.  What the heck.

We’re going to have fun.

So now we sit in the beautifully renovated King St Station and we wait on beautiful hardwood benches.  The benches make my back hurt a bit. But Paul and I take selfies.  And even though the train’s been delayed yet another hour, we’re happy it’s leaving at all.

 

It’s a good day.

Advertisements

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.”