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May
21
2019

Another day in paradise

I woke up on Sunday morning to a beautiful sunrise in the east and then I turned around to behold the grand arc of a rainbow above me to the west.   There’s this lovely Maroon 5 song that plays in my head on mornings like that:

 

Sunday morning, rain is falling

Steal some covers, share some skin

Clouds are shrouding us in moments unforgettable

You twist to fit the mold that I am in

 

It’s a simple song. It looks like it’s three chords in the key of C, but see, that’s the mistake a lot of people make about things. There’s always more to beauty than meets the eye.  Or the ear. I think that song is actually written in D Dorian mode, which is the key of D with no sharps or flats.  It’s both simple and brilliant.

 

We spent the day doing absolutely nothing.  In the afternoon we huddled in our home, enjoying it as if for the first time, as a storm threw rolling thunder across the sky and rain crashed down in torrents. This is what bittersweet means. We love this place and this town and this valley, and mostly we love all the people that have come into our lives and that have made this place our home for so many years.  We feel crazy to leave it, and yet, we are crazy not to. We are excited to experience the unknown.  We could stay and be relatively safe and secure but we won't.  Not now.  Not after what we've been through.

 

The Universe continues to unfold the pathway to Santa Fe and we live with amazement in our eyes each day. On May 5th Katie wrote about putting our house on the market and how crazy we might be to do it ourselves, but before the week expired, a lovely family contacted us. They are coming here from Moses Lake and our house is exactly what they've been looking for. Our timeline and theirs meshed perfectly.  We were worried about getting the appraisal done in time because we heard that appointments were six weeks out, but today there was a cancellation and the appraiser came out and that's done.  Just one more example of how the stepping-stones appear.  It's like we have a flashlight shining along the way, just far enough ahead so we can take the next step, but not so far that we are overwhelmed. 

 

Our friend who relapsed died suddenly.  That was hard, and sad.  And I'm still here.  I have trouble understanding that.  

 

Shakespeare called death,

 

"The undiscovered country from whose bourn

No traveler returns, puzzles the will

And makes us rather bear those ills we have

Than fly to others that we know not of?"

 

I know, I know, literary experts: Hamlet was contemplating suicide here, but still, he has a good point. Is it oft fear that keeps us rooted to a place or a time or a circumstance?  What if we cast off these mortal coils just a bit while we are still alive?  We want to see a new place, experience new things, meet new people.  We are acting on a whim, on intuition, we're making an emotional decision and we have NO IDEA what is in store for us.  Our plans are paradoxically concrete and vague.

 

And yet, there is synchronicity here.  The power of meaningful coincidence.  We feel supported and loved and incredibly grateful.

 

Sometimes I laugh at our faux “bravery.”  I’m reminded of the Monty Python’s “Career Guidance Counselor” sketch where the meek accountant wants to become a lion tamer, but the guidance counselor eventually suggests that he may want to get into lion taming, “via banking.”  And I often think, too, of this guy that got divorced and then retired with about a million dollars in savings and pension benefits, and he moved back home to Cherry Hill, New Jersey, a place he said he’d never go back to.  Katie and I threw up our hands in bewilderment.  He could go literally anywhere in the world, and he chose New Jersey. Maybe sometimes we just fall back into what feels familiar.  So, Santa Fe is not such a stretch.  Somewhere between lion taming, banking, and Cherry Hill, I like to think.

 

We stayed home most of Saturday, too, but late in the day we decided to take a bunch of artifacts to Goodwill and then we stopped at the Green Lantern for dinner and then I coerced Katie into taking me downtown for a mint chocolate chip ice cream cone from Brights.  She wouldn't let me get in the car with ice cream, so we took a walk and ended up at Plumb Cellars.  Erika and Gary Winston were playing a rumba so I finished my treat and Katie and I danced swing and cha cha and rumba and when we couldn't think of anything else we just held each other and swayed and at one point I looked at Katie's face and she was crying and smiling and giddy and my God, I love that woman fiercely.

 

And that's what I was thinking about on Sunday morning when I watched the sun rise in the east and the prism reflection of light in the west and smiled to myself and said, "Welcome to another day in paradise."

 

I love this place and I hate to go.  I am sad and joyous.  That’s now weird or even a paradox.  It’s just sweet, and bitter, at the same time.

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May
5
2019

May 5, 2019

Moving On
TL;DR: We are moving to Santa Fe.
Why this dramatic life turn?  Well, here’s a small sampling of what has happened in our lives and to people we know and love, in some semblance of chronological order, from the end of February until this moment: Joe’s dad died; Joe got pneumonia; Willow called in big guns for help; a good friend’s dad passed away; Katie took a couple of weeks off; we visited and fell in love with Santa Fe; we decided to move to Santa Fe; a friend and pillar of our community passed away (he had gotten his cancer diagnosis shortly after Joe got his); a new friend who was going through stem cell transplant at the same time as Joe’s suffered a relapse of her cancer; a dear friend of Katie’s also suffered a relapse of her cancer; Katie resigned from Willow; we put the house on the market.  All of this momentous stuff happened in less than two months.  
It’s possible something that stands out here is my resignation from Willow (she said in an understatement).  But let me explain.  In 168 hours each week,  I’d been working 70 (often starting at 4:30 in the morning), thinking or talking or worrying about work another 30, crying a lot, drinking too much (not during work hours, obv), and sleeping too little, trying to change the world one step at a time, starting with trying to help a kid recognize that lighting things on fire is not the best way to get the support you need from your teachers.  I was doing all that and more while still trying to balance caring for Joe with not bossing him around. (Spoiler alert: I always err on the bossy side.  But I think you knew that.)  And I was missing Joe, and he was missing me.  All day, every day, our hearts were aching.  We’re so acutely aware of how precious our time together is, and everything that was not doing just that felt like theft.
Willow is in good hands.  The new interim executive director is from Pride Schools in Spokane and has built two thriving, successful schools that look like our dream for Willow - high academic expectations, strong community ties, fun project-based learning, trauma-informed practices, and healthy school culture.  With Pride at the helm of pushing Willow to its full potential, I felt like I could finally take a rest and lay down my share of this mighty burden.  The school will go on, growing and improving every day, and I can come back for joyous visits.  Not being in the classroom and with the kids was extraordinarily painful at first, but in the way of the Universe, this dream will come to fruition in a very different form than I imagined.  Long live Willow.
Joe is back in the classroom, which he absolutely loves and is fantastically good at, but which exhausts him by Wednesday.  Cancer recovery is a long, slow process, and simply cannot be rushed.  He thrives in the classroom and his students adore him, but because he gives it his all, and his all is in short supply these days, we are constantly reminded of his need for naps, healthy food, and plenty of water.  And reminded once again of just how precious and possibly limited our time is.
We have decided to list the house ourselves (we know, we know, but I have time, energy, and talent.  Joe is a lawyer with a tax degree and a former highly successful realtor.  We got this.), and we’re hoping it sells in a hot minute so we can coordinate leaving with a bunch of other momentous occasions.  It’s a beautiful home in a fantastic neighborhood, and it’s been wonderful to us and for us.  And it’s huge - too big for the two of us, even with Archie’s long legs - and too expensive and cancer ate up all our reserves so we’re running out of money.  Check our listing on Zillow and tell everyone you know, will ya?
The good news is that when you overfill your time and hang on with the very edge of your splitting fingernails to your sanity, any break feels like a true luxury.  I’m getting better at not saying yes, at slowing down, at ignoring the siren call of busy-ness and productivity as a measure of my worth.  Our days may be busy sometimes, and they’re certainly full, but at a lovely pace that allows for smelling all those flowers.  We’d like to see you before we go at the end of June, and now we’ve got time.  I love to chat over a meal or a beverage, and I love to have company on dog walks.  Call, message, email, send a carrier pigeon - reach out and we’ll make a date.
Joe will continue to work for his favorite employer, Walla Walla Community College, on a contract basis, teaching online and helping develop the online business degree program.  I have enrolled at New Mexico Highlands University and will attend full-time at the Santa Fe Higher Education Center.  We will walk the dog and explore New Mexico and sing and play music and write articles and books and funny social media posts.   We will entertain guests and be guests and ride our motorcycles.  We will eat and cook and travel and stay home.  We will rest and heal and love each other without reservation.
Driving through Walla Walla in my favorite time of year has a new and special significance for a couple of reasons.  First and most obviously, it’s especially poignant because it’s our last Spring in Walla Walla.  But perhaps more importantly, the vibrant greens, riotous blooms, showy trees, and glorious sunshine signify our new life as well.  Last Spring, chemotherapy was busy killing Joe’s cancer and we were trying not to let it kill him.  This regrowth, rebirth, regeneration is a perfect analogy for Joe’s health and our marriage.  Not just a second chance (though we’ve had plenty of those!), but a new chance every year, every season, every day to really recognize what we almost lost and what we could lose any time.  And boy, are we blooming.
 

February
20
2019

The gifts we give, updated

I was pretty certain that I had said everything I needed to say about Biker Joe v. the Multiple Myeloma. I did not beat cancer, nor did I succumb to it.  It is a part of me now, buried back within my bones where it belongs.  I may very well die of something far more unexpected before that part of me wells up again.  We went to the edge of death, and were rescued.  In the ancient mythical motif of story-telling, we went through the stages of separation, trials, and homecoming.  Thus, a natural end to the story.  Not cured, but given a reprieve.

So why am I here again on this page?  Mostly because I am a writer, and the writer within me demands that I write.  That’s what makes me a writer—not novels or non-fiction works that sell mega-millions, but writing.  I am a writer because I write.  It took me a long time to understand that.  I’m still learning to accept that.

My father loved to brag about my law degree and my accounting background.  We’d be out golfing and that’s how he’d introduce me to the other gentlemen in our foursome.  Mother openly despised my passion for writing, even though she herself strove to write, to make meaning of her life and her experiences on the page. Dad was less overt about it, but he never mentioned my writing as something important that I did.  He never read any of my work, as far as I know.  That’s fine.  One thing I’ve learned is that family is not tribe.  I am a member of the Cooke family, but I belong to the tribe of writers.

That is not to say that my father does not see me.  In his own way, he does.  When I was 12, I came out to the family room on Christmas morning to find a Honda Mini 50 sitting on a 3 by 5 piece of cardboard next to the Christmas tree.  The multi-colored light from teardrop-shaped incandescent bulbs with pressed aluminum reflectors gleamed off the freshly painted fuel tank, restored to its classic yellow and white by my father’s industrious hands.  I rode that bike almost every day after school, and every weekend.  When it ran out of gas I rolled it over to the Esso station just across the highway from our farm and filled it for eighty cents. It’s only been in these later years, over a quarter of a century later, that I realize what a sacrifice he made. My parents didn’t have much money back then.  Dad worked for the Production Credit Association and mom taught middle school. But it wasn’t the money he spent to buy the little used bike and to fix it up and get it running, it was the fact that he must have endured mom’s quiet wrath.  She considered motorcycles to be “hellish machines” and that they would be the death of me.  She didn’t want to see them, hear them, or talk about them.

Same with skiing.  You must know by now, if you’ve been following any of my story, that I love motorcycles and I love skiing.   When I was a kid, I took those things for granted. I didn’t really appreciate them until I gave them up for years and years, and felt them still tugging at me, every day.  To paraphrase Robert Bly, we spend most of our youth deciding what parts of us to put in the long bag we drag behind us, and then we spend the rest of our lives deciding what parts to bring out again.  When I’m up skiing now, and I see the non-skiing parents sipping coffee, reading a book or chatting with another parent or staring out the window, I see my father, sitting in the lodge at White Pass, watching and waiting.  It was a two-hour drive from our house, up into the mountains, in a Ford station wagon with rear-wheel drive.  I’m sure he had to stop and put on chains many times while I sat in the back, waiting.  He bought me gear at a yard sale.  Leather boots.  A pair of old Head skis that were too long and made with a rigid steel core for speed but not so good for turning.

He had no way of knowing back then what a gift that was to me, and I was too young to appreciate him or his quiet way of being.

When I ride, and when I ski, I lose myself in the moment.  I am focused and present and complete.

Was it the gifts that shaped who I am now today, or was it him?  It feels like those things that I love to do and experience now, that are so much a part of me, that define me, are like my cancer.  Genetically locked into the very center of my being.  Again, mom hated even the thought of skiing. She was deathly afraid of any sports; afraid I would get hurt.  Her desire to protect was fierce, and must have come from some deep wound, but no one ever talked about that.  She loved me in her own way, just as my father loves me in his.

My father is dying now.

On Monday we received a text from my sister informing us that dad had fallen during the night.  He was okay, but they were taking him over to St. Pete’s emergency room just to check him out.  They sat in the emergency room for a while before he was able to be seen. At noon they decided to admit him in order to give him some fluids and to have him checked out by a cardiologist. His blood tests showed elevated enzymes that could have been a result of the fall, or that could indicate a possible heart attack.

At 3:20 the hospital staff were weighing the risks and benefits of an angiogram. 

At 4:36 my sister sent this message: “Drs say nothing more to do.  Dad went downhill fast.  Any more intervention too risky.  Comfort only now.  May only be hours.”

At 4:44 Katie and I were in the car heading to Olympia.  We arrived at the hospital at about 11pm.

St. Pete’s occupies a sprawling campus just south of the state capitol building.  The wing that dad had been moved to looked like it had been built in the 50s, clean but not modern.  He wasn’t hooked up to anything.  Just a catheter and a hep-lock at his collarbone that looked like standard hospital protocol.  No IV drip. No oxygen.  This was hospice care.  Some morphine and maybe some Ativan to keep him comfortable.  When we got there, he was sleeping but a bit agitated because he was due for some meds.  My brother, Gary, was there, and his daughter, Kendall, and her mom, Penny, who spent so many loving hours caring for my mother in her final days, and both of my sisters, Lee Anne and Mary.

I would have loved for dad to be able to spend his last days on the farm, in the house that he built with his own hands from a kit he ordered from Sears.  His forty acres was the last bit of land left from his parent’s estate. The rest of it, divided up between him and his two brothers, had been sold off and divided up some more and developed, but that little forty-acre piece he’d held onto and turned it into a Christmas tree farm.  In the seventies, he and mom had added a second living room onto the back of the house, with floor-to-ceiling windows in the shape of the prow of a ship.  We still call that the new room, even after all these years.  Mom passed away in that house, with the kids and dad gathered round.  July 25th, at 10:50pm.  I was holding her hand.

For dad, who labored his whole life building that dream, we just couldn’t make that happen, for lots of reasons, but Lee Anne got him into a nice “senior living” establishment in Lacey—“Bonaventure of Lacey: a beautiful and serene retirement, assisted living and memory care community near the Indian Summer Golf and Country Club.”

The plan is to get him transferred out of the hospital and back to Bonaventure for his transition from this world to the next.  Katie and I made a tough decision to come home and wait here.  We said our good-bye’s.  I love my dad, and I think he knows that, even though we didn’t always see eye-to-eye, and our conversations were often forced and stiff, more about weather and kids than anything else.  Rarely, well, never, deeply substantive.  He both knew me and did not know me.  Really, I have no idea what he thinks of me and my odd decisions. He thought I’d be a banker or a tax attorney.  Instead, I work with non-profits and social service organizations.  I write books.  I play music.  I sing and dance.  He and I have almost nothing in common.  He loved the earth and trees.  I can’t tell a scotch pine from a spruce, although after a lot of repetition, I do think I can recognize a blue spruce, and a Douglas fir, so maybe I did learn some of my father’s language.

We will pack up my kids on Friday and head back over, unless he passes away between now and then.  I think that is likely.  His kidneys have failed, and he is not eating or drinking. I think Mary was able to dribble a little bit of ice cream into his mouth yesterday, but that’s about the extent of his fluid intake.  That’s all he can do.  His body is shutting down.  His time on earth is done.

On the way home from Olympia yesterday, I got an email notice that Katie’s favorite college teacher’s husband had died unexpectedly in his sleep.  She had just retired last year.  A friend of mine from high school passed away on Christmas day after a years-long battle with cancer.  Another friend was working with her newly-found soul mate on their new home when her fiancée suffered a brain aneurysm and died in her arms.

Death is the inevitable end of all our stories.

Katie was talking to my father.  Her voice was soothing.  She had one hand on his shoulder.  She talked to him about me, about my kids, and about the legacy he had built, a legacy of people, of lives he had created and shaped, and I remembered, as she spoke, something I heard once, that God’s gift to us are the skills, talents, abilities, and experiences that make us unique in all the world, and that our gift back to God, and to the Universe, is to use those gifts to make the world a better place.

I think my father has done that, and I can ask no more than that now of myself.  This then, is his final gift to me.  To continue to live, and to live fully and to serve and make the world better, just one day, one activity, one moment at a time.


post script: On Wednesday morning we got a call that dad's condition had deteriorated.  The plan to move him back to Bonaventure was scuttled.  I bought a one-way ticket to Seattle on the 1:30 Alaska flight, packed a bag, and Katie drove me to the airport.  Dad passed away while I was in flight.  Gary picked me up at SEA-TAC and we drove down to Olympia, chatting about dad and his life.  We got to St. Pete's just before 5, sat with him for a while, then went to dinner.  Gary was exhausted from staying up all night with dad, so Lee Anne's husband Eric drove me back to Seattle and I caught the 9:20 flight back to Walla Walla.  I feel the need to wrap this up with some statement of finality, something wise, but really, I just went home and went to bed, and for the rest of us, life goes on.

 

February
10
2019

February is the longest year

February is the darkest month for me.  I love snow, and I ski as often as I can, but I do hate winter.  It is the season of grief.  I recognize the value of turning inward, resting, hibernating, and allowing myself to rest.  But I suffer from seasonal affective disorder and I find the month of February to be about seven years long.  Every single year.

You may have read in the last month that we got the most amazing news about Joe’s last bone marrow biopsy.  The final test shows absolutely no sign of cancer in Joe’s bone marrow, right down to the molecular level.  This sounds like a natural end to our Cancer Story™.  I have been thinking that I don’t really have anything more to write about this journey.  That may be true, or it may be that there’s a lot more to write that you may be interested in reading, but I haven’t thought of it yet.

My job is a director of a brand-new start-up charter school - one of the first dozen in the state, and the only one in Southeast Washington, and the only rural(ish) model.  For five years, there has not been a single day that I have not thought about, worried about, agonized over, planned for, or worked on this dream.  I enrolled in college courses (three times) to finally get my degree and worked simultaneously on my studies and this school.  Still working on both.

I now work for Willow Public School, and I love the scholars their parents, and the unbelievably dedicated staff with whom I work and dream.  The work is hard and the hours long, and some days, the reward is simply nowhere in sight.  Sounds like cancer treatment, doesn’t it?

Joe and I always planned on these long hours and this hard work.  We started this adventure together, and the plan has always been for me to work like a fiend for a few years to get the school off the ground, then to step out of this role and make way for new leadership as I move forward with my other professional goals. 

Then came diagnosis and treatment and remission, the best possible outcome in this scenario.

Remission - this deep remission especially - is a huge sigh of relief, but there’s a weird space we occupy right now.  Post-cancer treatment feels a lot like PTSD. Joe is feeling better almost daily.  He’s writing and riding and working.  He still naps, but not for most of the day, and his level of productivity has increased dramatically, even as he complains about not being the least productive.  His health is good, aside from a lingering cold.  We only see the oncology team once a month, and we don’t need to guard his baby immune system with the intensity we once did.

But the fact is that we’ve been on high alert for a year now.  Checking blood test results, asking questions, doing obsessive research, visiting and calling doctors, planning for every contingency we could imagine and some we couldn’t.  For a time, we were checking blood test results daily, then every other day, then weekly.  It’s very difficult to find the line we can cross to breathe and relax and not view every single thing we do through the “But What About the Cancer” filter.

Joe started a new maintenance chemotherapy drug last month that has us both a bit nervous.  The last chemo suppressed his blood counts and made him really sick, even though it was a smallish maintenance dose.  We are on pins and needles to see how his body tolerates this one.  If it does suppress his system, he will be anemic, exhausted, and once again highly vulnerable to infection in the midst of cold and flu season.  He’s been doing pretty well, having days of exhaustion but able to recover well and work too much.

Our latest concern is the outbreak of measles in the Pacific Northwest.  According to the CDC, if an unvaccinated person walks through a room within two hours of a carrier, that person is likely to be infected.  With Joe’s still-recovering immune system, the possible complications are pretty clear and pretty likely.  We had a ten-day trip planned to do some skiing on the west side of the state and to do some long-overdue work on our own side hustle of consulting.  We have canceled that trip and are staying home to stay safe.  I am furious with the parents protesting and chanting about their right not to vaccinate their children.  Their decisions are almost never based on actual science, and they jeopardize the life of my person.

I know I’m suffering from annual depression.  For several years now, I’ve been able to combat it with regular ski trips, other exercise, and a lot of grace toward myself.  This year, I can see it’s time to call my doctor for a prescription.  

I know I have copious resources, the privilege to access them, and smarts to use them.  I know I have so much to be hopeful about and that the work Joe and I are doing is good and necessary and worthwhile.  I know that my job is making a positive difference every day.  

And?  I’m tired and hopeless and I don’t want to go skiing or have lunch with friends or even get a pedicure.  I want to drink and sleep, and that is all.  I’m frustrated and ashamed as well.  Joe beat cancer, we have a clean bill of health.  He is feeling great and we are working and writing together, able to enjoy those things we missed the most during his year of treatment.  I have so much right now and so much ahead of me.  What the hell do I have to be depressed about?  But depression is a lying bitch.  

I’m telling you this, Dear Readers, because I am first and foremost a truth-teller.  I have battled depression nearly my whole life.  It almost cost me everything when I was 16 years old.  It’s very difficult to talk about.  But readers, we must talk about this.  Your depression is a disease, and that disease is not you.  It’s what I tell other people, and it’s what I need to know right now, too.  

So I’ll get help.  I’ll get pharmaceutical help and I’ll call my therapist.  Feel free to hit me up and hold me accountable.  I’ll count on you to do that, on my scholars to keep me present, and on Joe to look forward to every ski trip like it’s Christmas morning, to hold me tight and remind me how lucky I am.  

January
16
2019

That's just life

Okay.  I confess.  Last Thursday it was 56 degrees Fahrenheit (that’s about 13 degrees Celsius) in downtown Walla Walla and I pulled the Harley out from under the cover, uncoupled the battery tender, fired it up, and rolled it outside.  I’d been watching the weather forecast all week, like I do, and Thursday turned out to be some kind of weird Walla Walla anomaly.  I rode north on 2ndto Main Street and just tooled around for a while.  It was heavenly.  Reminded me again of what it’s like to be really alive.

On Sunday we took Nanette up to Bluewood and hit the slopes, again.  My sixth time up this season.  I told the transplant team my goal was to be skiing by January and I’m pretty sure I heard some thinly veiled scoffing.  But dreaming about riding and skiing got me out of bed on days when I didn’t want to get up.  It got me walking when all I wanted to do was sit and sleep.  I just walked around the block at first.  Then a mile.  Then two. Then four and then I slept for about two days because I’d over-done it, but I was set on skiing and watching the snow forecast in November, long before there was any snow in the mountains to speak of.

When we showed up in Seattle on the 17thof December, the medical team couldn’t argue with my progress and Dr. Bensinger shrugged when I asked if I could ski.  “Why not?” he said.  We took Kurt and Emi and Nanette up on the 23rd.

But you probably know all this.  I’m just reiterating what’s already been covered.  And Katie wrote about the time we’ve been gifted, and the molecular level of remission we’ve achieved.

That’s not really what this post is about.

It’s about life now that we’ve survived 2018.

My biggest fear wasn’t for myself, and it wasn’t fear, really.  It was sadness.  After all the years we’d spent struggling with the boundaries of our friendship, having to deny ourselves, so much of what a normal couple enjoy, we’d finally come to a place of peace and joy and togetherness.  And then I had to consider, for most of a year, what it might be like for Katie, the love of my life, to lose all that.  To be alone.  I knew she’d be fine because she’s strong and independent and resilient—more than anyone I’ve ever known—but still, we had so little time together.

So, everyone on the medical team said I’d ‘breeze through’ the process, and here I am, a year later, in complete, molecular remission.  Best outcome we could have hoped for.  Still, if that is ‘breezing through’, I hate to think what it’s like for those who struggle.  I had to completely let go of everything.  Everything.  That day they infused the chemo into my bloodstream that completely destroyed every cell of bone marrow, I let the old me die.  I had to.  Stephen, our transplant coordinator, called it ‘scorched earth’, my bones.  Nothing left.  And so, in a sense, I was dead.  We went out to dinner that night because it was Katie’s birthday.  And the next day we just waited.  Then, on Friday, they re-infused my stem cells back into my blood stream and then we waited some more, all through October, for those cells to graft into my bones and start producing plasma again.  I don’t remember much of October.  Katie reminds me of events sometimes.  Visits from friends.  Meals thrown up.  Embarrassing accidents.  Really, I’m glad I don’t remember it.  I was practically dead, after all.

And so, now.  What this is all about.  A new lease on life.  I have been granted the extraordinary gift of more time.  And I want to make it mean something.  It took almost a million dollars to save my life, and the ongoing treatment for the rest of my life runs over $10,000 a month. Yep.  Ten. Thousand. Dollars. A. MONTH.  For the rest of my life.

(I keep thinking there is an actuary somewhere in the insurance bureaucracy grumbling loudly about this.)

How can I express my gratitude?  How can I express how I feel about the friends and acquaintances I lost to cancer and other diseases in 2018?  How do I comfort those who have been left behind by loved ones who were not as horribly lucky as I have been?  And what do I tell those who still suffer and struggle?

I don’t know.

I keep thinking of that scene near the end of Saving Private Ryan, where Captain Miller, with his dying breath, says to James Ryan, after so many men sacrificed their lives for him, “James, earn this…Earn it.”

I feel I’ve been given this crazy gift and this giant responsibility.  I know that by the grace of God, I don’t deserve these extra years. I didn’t earn them.  They are a gift.  An outright, unconditional gift.  And yet, I still ask myself, “What will I do with these days for which we have all fought and paid for so dearly?”

I can not waste them.

Yes, Rest and Recover is still the main thing on my daily To Do list, and will be for a while, I think. Advise from the medical team and other survivors indicate that I won’t feel myself again for at least a year. I, of course, laugh at that.  I want to ride to Sturgis this August.  A thousand miles on an 800 pound motorcycle in the heat of summer.  Maybe I am crazy, but we have to do these things while we are alive.  Following our crazy dreams is part of being alive.  It is life.

This is, by the by, not the first time I have been granted an extension of life.  In June of 1994 I was involved in a single-car crash that should have ended my life.  When the firefighters and paramedics pried me out of the car, they were surprised to find me alive.  That is a story for another day, but it was an awakening for me—a turning point in my life, and I have done good works since then.  It was a promise I made to the Universe, not a trade, but a commitment to use my time more wisely.  Not that I look back and can’t see times I was unwise (see how I convoluted that sentence on purpose?).  But, as I told Katie last year when we got the diagnosis, I can die now and feel that I’ve lived a good life.  I’ve done more good than harm, I hope.  For the mistakes I made and the time I wasted when I was younger, I think I have made amends. I think I have added to the scales of justice to the side of good, offsetting as much pain and suffering in the world as I possibly can.

But here now, again, I find myself at this turning point, this awakening.  Once again I open my eyes to the cool light of recovery, and I find myself saying, “Thank you,” and asking, “Now. What more can I add to the stream of life?”

I have novels I want to write.  I will strive to be a better teacher.  I will work all the more as an advocate for education reform.  I will do my best to provide for Katie and her children and my children.  All of that is clear.  And I will, with all the courage I can muster, follow the path the Universe unfolds for me, for I really do believe that there is a reason I have been granted this amazing gift of time and life.

Once a long time ago, exasperated with my life, I told my mom that I thought God was testing me, and she smiled, that sad, quirky, half-smile of hers, and said, “Oh, honey. God doesn’t need to test you.”

I still laugh at myself for thinking that.  I get it now.

This is not a test. It never has been.  It’s the real thing.  It’s Life.

January
15
2019

Please be so negative... (by Katie Christianson)

I am typing this in a hurry as I am already running late to the Next Big Thing, as usual, because this is how I’ve arranged my life.  But I’ve got things to say (also as usual). Joe went to the oncologist yesterday for the first visit of 2019, and we got our first really great news of the year.  The bone marrow biopsy measures something called minimal residual disease. It’s a very sensitive test that looks for the tiniest sliver of a hint of a suggestions that there are multiple myeloma cells hanging out in the bone marrow.  (That’s my very scientific explanation of this test.) When Dr. Cunningham came into the room, it was the first thing he said: “Well, Joe, I’ve got some great news for you.” Joe’s test for MRD was negative, showing Joe has achieved the very deepest remission possible - remission at the molecular level.  Research shows that the deeper your remission, the longer you have before the disease comes back and the longer overall lifespan you have. Molecular remission is the best possible news.

It’s good to get this news to kick off 2019.  Anyone who has been in an exam room or doctor’s office and heard those words, “I’m afraid I’ve got some bad news for you” knows how that one sentence can upend your whole life.  To hear the opposite is a benediction of sorts - an answer to all the prayers sent to all the deities on Joe’s behalf. It allows us to breathe an even deeper sigh of relief.

And yet…

I have a very small tattoo on the inside of my right wrist.  It’s a simple semicolon. Grammatically, the semicolon connects two equally important independent ideas.  It tells the reader - hey, these two ideas are different, but I want you to know they are both important, and there’s a small pause here.  In ink embedded in my skin, this semicolon indicates that there is someone(s) in my life who considered or attempted suicide. It indicates that where there could have been an end, there was a pause. That there are two equally important, connected parts here, separated by a pause.  

This news is like a semicolon, connecting two equally important pieces for us: post-diagnosis and post-treatment.  We’re not obsessing over a looming recurrence. We don’t have time for that - we’re busy figuring out how to make the most of this life.  This semicolon reminds us of two things daily. Through all kinds of luck and hard work and modern miracles, we’ve been given a remarkable opportunity.  We’ve been reminded of the beauty, grace, richness, and fragility of this life. And we’ve been given a chance to make it count. Any one of us could be gone tomorrow.  The gift we’ve been given and the challenge we’re up for is making this half of our lives as important as the first.

January
5
2019

Expectations

A friend of ours posted this chart depicting the healing process—expectations v. reality, and of course it showed up on our feeds and of course Katie tagged me.  Yesterday was a good day for me.  I showed up in my office and got a lot of work done (comparatively) despite the fact that I picked up a doozy of a head cold on New Year’s Eve.  Today hasn’t been as good to me.  I’m tired and kind of beating myself up for not having more energy.  I have work I want to do, projects to accomplish, and I am still at the whim of this fragile physical body.  At least my mind is starting to recover a bit.  I’m winning more card games and scrabble challenges than I was last month and the months before that when the chemo had scrambled my brain.  I notice small things like that.  Like being able to write again.

Cancer stripped away significant portions of my physical and mental being.  Well, early on I lost about twenty pounds and I was underweight, but during treatment I put on enough mass to put me about ten or twenty pounds over my ideal weight.  But despite gaining weight, I lost muscle mass.  I did my best to stay active during the six months of conditioning treatment, but after the massive chemo blast in late September that scorched every stem cell from my bone marrow, there was nothing I could do but rest and recover, slowly.

Today is Friday, January 4, 2019.  Day 98. Sunday will be day 100 post-stem-cell-transplant.  It’s a milestone.  My cancer is in complete remission, but it’s still in there, somewhere, coded into my genetic material, lurking and waiting to re-occur.  Soon I’ll start maintenance therapy with a new drug, pomalydiamide, a third-generation derivative of thalidomide.  Thalidomide was prescribed in the late 50s and early 60s to ward off morning sickness.  As an anti-nausea drug it was catastrophically horrible, causing infant mortality and deformation, but somehow researchers dug it back up several years ago and found it was highly effective in suppressing the mutant plasma cells that cause Multiple Myeloma (it’s also used to treat leprosy). Lenalidamide was the second-generation analog, but during my conditioning therapy prior to the stem cell transplant, I must have reached some toxic level, and ironically, it caused so much nausea I had to quit taking it.  So, for now I’m relatively drug free, except for anti-viral and anti-biotics that I take to boost my newly-reforming immune system.  You see, most people don’t die directly from Multiple Myeloma.  Major causes of death are kidney failure and pneumonia due to the high levels of protein from the cancerous cells and low levels of white blood cells.  The mutant plasma cells crowd out the good white and red blood cells leading to anemia and immunosuppression.  It’s all very cool from a scientific standpoint unless you are the subject.  Then it’s just depressing.

 

However, the stem cell transplant worked.  I’m cancer free for now, and feeling better every day, and as it was quite a wake-up call for Katie and me, we are spending quite a bit of time these days planning and re-organizing our lives around our lifetime, 10-year, 3-year, and one-year goals. I told Katie at this point my lifetime and 10-year goals are just going to be the same.  I’m focusing on the WHY and the WHAT, and letting the HOW work itself out from there.  It’s both a refreshing task and daunting.  Refreshing in that we are starting from a point of rekindled awareness: we have had to reassess all of our assumptions about what we have held dear in the past.  Cancer didn’t just strip away my physical and mental energy, it also stripped away a lot of ideas we had about who we are and what is important to us.  In a sense, we are starting over.  Daunting, in that in a sense, we are starting over.

 

Here’s another random thought—three things I wish I’d spent more money on:

1.    Glasses. I bought the cheapest bifocal lenses and frames because, well, I’m worried about money because I’m unable to be as productive as I used to be.  Unfortunately, struggling to see the keyboard and the computer screen doesn’t help productivity.  I can see okay with my contacts and readers, but the chemo has made my eyes really dry and sensitive.  I’m just saying, if I had it to do over again, I would have spent a little bit more on glasses.

2.    Office chair. I didn’t buy the really comfy leather one because, well, I didn’t think I was worth it.  For the first year, the chair belonged to Tigger, our aging feline. She passed away (kidney failure, ironically) and then I was diagnosed with cancer and then I found myself spending a lot of time in that same chair and wishing I’d bought the more expensive one.

3.    Car tires. It’s where the rubber meets the road, baby.  My car is all-wheel drive and we ski a lot and it’s great in the snow.  I had really good, all-season tires but we hit a pothole on I-84 and when I was getting the oil changed a few months later the tech noticed a big bulge on the sidewall of the front passenger tire.  Because the tires were worn down below some threshold percentage, and because the car is all-wheel drive, I had to replace all four practically-new tires so I opted for a cheaper model.  We haven’t had any problems driving in the snow and ice, but still, I think, why didn’t I spend a bit extra to get the best?

We didn’t skimp when it came to cancer treatment though.  We went to the best.  Also, years ago I made sure we had great health insurance coverage and life insurance. I’d love to have subscribed for more term life, but I’m glad I opted for more than just the minimum.

 

Another weird thing I’ve been noticing lately.  There are these strange relics laying around the house.  Green plastic emesis bags, strategically placed near the couch, the bed, in my office, and the bathrooms.    They’ve mostly become part of the landscape, so familiar we barely notice them until one day we think, huh, it’s been months since Joe’s thrown up. Do we still need these here?  And yet, it feels weird to get rid of them, as if that’s asking for trouble.  As soon as you get rid of something, that’s right when you need it, right?

 

Another sign of recovery? I’ve started reading again!  My chemo-brain made it really, really hard to concentrate.  I could watch a movie, but I couldn’t read a book.  It’s only been since Christmas that I’ve been able to read again, much less write.

 

I know I’m wandering all over, and the old writer in me would have reigned me in with guilt and abhorrence, but the new me is just writing what comes to mind, because, well, because it’s what is calling to me right now.

 

Here’s the other thing that has been bothering me.  During my recovery in October, when I was at my very lowest, weak and throwing up and unable to sleep but too miserable to be awake, spending most of the day in the hospital hooked up to fluids and meds, there was this Instagram account I followed, called cancergirl88.  I don’t remember her real name now, but she had a tumor in her back that doctors discovered while treating her for an injury she received practicing parkour. You have to love her just for that. She was young and active and newly married and slammed by cancer in December of 2017, about the same time I was. She chronicled her treatments religiously and honestly, all the ups and downs, and I took a lot of strength and comfort from her struggles.  Sometime in there her condition took a turn for the worse and then her account just disappeared.  There’s no sense of what happened.  She’s just gone.  Was she being harassed and pulled her account?  I don’t know.  I like to think that’s what happened.  She was a bright and lovely spirit and now there’s just nothing.  Maybe her family forced her to take it down, but I can’t reconcile that possibility with the fierce determination, independence, and vulnerability she displayed in her posts.

 

I miss her.  I hope she is well and happy, wherever she may be.

 

Writing is much harder for me now that it was before cancer.  I struggle and fight more for the words, and yet I feel more deeply.  I hope this recovery thing continues to worm it’s way along the upward trend, at least for a few more years.  But we don’t know, do we?  None of us know when our time is up.  None of us know when we will be asked to lay down and rest.  I’ve based my whole life, my whole self-image on productivity and work, and now I have to re-think that.  I am not young any more.  I am thinking more about quality than quantity.  Quality of work.  Quality of life.  Quality of time.

 

Cancer is just another burden I carry with me now.  But it is a burden laden with gifts; gifts I have only yet begun to understand and to reap.

 

And so this day ends. My alarm is about to announce that it is time to, “Push manual button on Instant Pot.  Set time for 1 hour.”  I think Katie put a pot roast in there, with carrots and potatoes.  That was the plan.  Of course, you never know if what actually happens and what was planned are going to be even remotely similar.

December
9
2018

Finals Week

This was a week of tests. On Monday I had a full body MRI to check the health of my bones.  On Thursday I had a blood test, and a bone marrow biopsy (that’s really two tests – one of the marrow and one of the bone itself.)  On Friday I completed a test of my kidney function.  These aren’t really the final tests.  Multiple Myeloma isn’t curable, so I’ll be undergoing chemotherapy and taking intermittent tests for the rest of my life.  However, these are the final tests to determine if the stem cell transplant was a success.  It’s called “re-staging.”  The prognosis looks good.  All indications are that the cancer is in remission.  We get the official results when we see Dr. Bensinger and the rest of our great team in Seattle later this month.

It’s been over two months since the transplant, but I’m still tired all the time. Last Monday I slept in till 8, had breakfast and took a shower, walked to the hospital (about 2 miles) for my bone scan, walked back, got home at 1 and napped until 4.  Tuesday and Wednesday I was too tired to do anything. Thursday I had two Valium before the bone marrow biopsy and then afterward I slept all day.  I get maybe 2 good hours a day if I’m lucky.  So, as with most people, the pictures you see on Facebook and Instagram are the public me—snapshots of how I want you see me. Healthy, happy, outside, full of life, but I’m having to accept the truth of what they told us initially, that recovery could take a year.

I’m on my pity-pot and I need to do something about it.  Therefore, I have decided that for everything I feel like complaining about, I will find something to be grateful for.

One thing I am grateful for every day is our insurance coverage. The cost of treatment so far has exceeded $700,000 (mostly covered by our awesome health insurance) and that makes me think that in the years I have left now, I need to be a pretty awesome person. That’s a lot of money to invest in keeping one small-town guy alive for a few more years.  And in addition to covering Katie and me, we cover 5 dependents. I worry about money, because as incredible as our coverage is, it doesn’t cover everything.  It doesn’t cover travel and it doesn’t replace lost income from my consulting and writing business.  See, I can get down about that, but then, if I reframe it, I realize that insurance has paid for all this life-saving treatment that I could never have paid for otherwise, and we keep asking ourselves: How do other people pay for this kind of care?  We are so lucky and grateful.

I’m grateful for both of our amazing employers.  We get so much support, not just from the institutions we work for, but from our co-workers as well.  They cover for us in our absences, and donate sick leave so that I can rest and heal and so that Katie can take care of me when I can’t care for myself.  I may complain about being bored at home, but thanks to my employer, I can be here getting well so I can get back to work. That’s a lot to be thankful for.

I’m grateful for this time to heal.  Along this journey we’ve met plenty of people who have to go back to work too soon, and who work taxing jobs, maybe even jobs they don’t like.  Don’t get me wrong--I want to work.  I like to work.  Our old mantra was, “work hard, play hard,” and we did both.  We played hard so that we had the mental energy and stamina and attitude to work hard.  It’s been a huge a difficult shift for me to give that up.  I complain about not having the energy to complete the projects I want to work on, but really, as Katie reminds me constantly, my #1 job right now is to rest and heal.

I’m grateful for our friends and family.  I get pretty lonely being cooped up in the house all the time.  I can’t go to a movie or a restaurant, although last week I went to the grocery store with Katie.  We went late at night and I wore a mask and kept my hands in my pockets, but even so it was like a date night.  We’re feeling pretty isolated, so we look forward to the reactions and comments on our social media posts—they help keep us sane.  Our friends and acquaintances have helped us out financially, as well. Many people contributed to our GoFundMe campaign, and Kontos Cellars is donating raffle proceeds and tasting fees from the barrel tasting weekend to help offset our uncovered medical costs and mounting debt.  I know everything is going to be okay, but it sure helps to hear that from our friends. Everyone’s been through tough times and when you share your strength, hope, and experience with us, it makes the long days seem less tedious.  We’re looking forward to sunshine and happiness again, and thanks to you all, we can remember that it is coming.

I’m grateful most of all for Katie.  It took us seven long years to finally be in a position to be together but the wait and all the longing was worth it. We can’t imagine ever being apart again.  And then 2017 was a fantastic year for us, personally and professionally.  We got married.  Bought a house.  Did some traveling.  Katie continued her work on Willow and I was writing and consulting and teaching and we were really, really happy.

And then 2018 came and everything changed in that single moment the doctor said, “I have some bad new for you.”

It sounds like a cliché, but that’s just about the only way it can be said.

We honestly don’t know what 2019 will bring.  I hope our luck turns around.  We have a lot of things we’d like to do with the time that is left to us.  Hopefully I’ll be back in the classroom by spring term. Maybe we’ll get a couple of days of skiing in.  Hopefully I’ll be strong enough to ride the Harley to work.  Hope and gratitude are what we lean on now.  That, and each other.