In Gladness

Jenny here. 

Two weeks ago today we were sitting in a dimly lit French restaurant in Brooklyn with old and new friends.  We had flown out that morning to attend the weekend wedding event of one of my college friends. 

 

I am going to start with the punch line tonight:  Travelling post-cancer is not the same as pre-cancer and despite my careful considerations of how we would be navigating travel to, from, and around NYC, plans are made to change AND in that change, change us.  Or in our case, sometimes in our stubbornness to NOT accept change, we still are changed, only through some self-inflicted suffering. 

The morning started off early, after just a 2 hour nap (we keep a late schedule, so it’s hard to change that for just a weekend!).  We were out the door around 4:00am, dogs walked, fridge stocked with food and beverage for the pet sitting friends, bags packed as light as possible. 

“Just take carry-on bags” we thought.  “It’s just a few days; it’s summer clothing, save the baggage fees”.  “We’ll get coffee when we get to the airport. We have done this before.”

4:04am. On our way to the car, running late, the extendable handle to the rolling carry-on bag snaps off.   It’s too late to stop and buy something else and too late to dig up another bag that would work.  So we were off, busted bag and all.

We decide to park in the airport lot instead of the further away shuttle lots thinking the walk is not far.  I mean, we have flown before, pre-cancer, and this is NO BIG DEAL.  We had talked about Uber-ing it from home, but decided not to do it.  So we parked.  Handicap spot, mind you.  It’s not THAT far.  Wil with cane, back pack, and insisting to carry said broken carry-on as we walked…and walked…and walked from the parking lot.  And then walked…and walked…and walked through to the TSA area.  The line was terribly long.  I asked Wil about seeing if we could do the shorter “needs assistance” line.  He proceeds to the long line, still dragging bags, until an older TSA worker actually insists, based on Wil’s haggard appearance, that we cut to the short line. 

Fearing a fall (or just plain extra exhaustion for him), I pick up the bag I am now cursing we didn’t check at the front door, hauling it through the airport.  

I was still un-caffeinated. 

I was angry. 

At the bag, at him, at me, at cancer, the universe, and nothing at all.  This is not how I saw this trip.  This is not how I saw us, ever.  What should have been an easy, done-it-all-before-morning, was turning out to be so so stressful.  And all I wanted in that moment was our old pre-cancer ease back.   For Wil to walk without pain and carry my bag. For me to just worry about stupid shit like picking a magazine for the flight. 

After we made it to our terminal, there was a Starbucks.  *Universe thank you!* And I began the task of waiting in line to grab us something for breakfast while Wil sat.  I had asked him about pre-boarding, so we would have more time to get him settled...he thought he might be OK.  There is often this divide between wanting him to try at everything and worrying it will all crumble.  Flying is hard when you are a big a tall guy, especially one with neuropathy and a cane.  Flying is hard on the short companion who sits next to the tall guy too.   Walking, sitting, getting settled.  Everything just takes more time now.  It happens, just at the small expense of bystander eye rolls and impatient looks.

Hailing a cab at your destination?  Should be easy too…except for the long hike to the area they allow you to hail one at LGA.  Carrying the broken suitcase. 

Nothing felt easy.

Side Note:  We would like to think of ourselves as generally honest, loving, smart, and kind people.  But we are bullheaded to a fault.  Both of us. I could go into more boring details, but each detail contains this truth:  Life is different now and we weren’t prepared to admit it or fully live in that reality.  So reality hit us squarely in the face and said "YES, be here too. Be glad. Live."

We arrived at our Brooklyn brownstone Airbnb find,  very tired.  But happy that there was a freshly made bed with a wide open window, breeze flowing in from the backyard garden.  And so I let go. Again. This. Is. Our. Life. And we're across the country. Something that two years ago was, forget easy, impossible. 

I will let some of the pictures tell you the rest of the weekend.  It was beautiful, each and every moment, from the Zen Buddhist ceremony, the gorgeous reception with good food and wine (and even better people),  hitting up the local bodega for breakfast finds, hipster coffee, the Transit Museum, an afternoon in Brooklyn Bridge Park, and watching the sun set behind the Manhattan skyline…sure, it was less walking than we would have done in years past (we did a lot of Uber to preserve Wil’s energy), but we also did quite a bit of post-cancer-living-it-up as best we could...making memories, outside a hospital, together.

And the best part?  We checked that effing broken bag on the way back, took the pre-board help, took our time, lived out the lesson we had learned, and proceeded in gladness and safety.  I think there will be more travel in our future, even if it looks different than before.  How could it not?  Acceptance is certainly not a destination, but instead a process of post cancer growth. Bring it on. We want to live some more. 

Much Love.

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On our way to our Airbnb, so tired:

 

Airbnb street, door, room window:

 

 

  

First meal:  Shake Shack...hello old friend!

 

Wedding Day

 

 

 

 

 

 

 

Transit Museum

 

 

 

 

Brooklyn Bridge Park 

 

 

 

 

 

 

Bye NYC!

 

She thought

Jenny here.

It's Day +970.

Do you know what that means?  30 days until we hit 10 x 100 days.

Each day of the first 100 days post transplant (attempt number 2), felt like 10 years. And yet now, here we are approaching 1000 days.  Dare I say, there are a few days in a row we have lost count...and just loved and lived like regular people. 

Updates:  Wil has killed it in school lately. He worked his tail off spring semester and is now in summer session. Little by little he's chipping away at this new dream. Physically everything is pretty much status quo. I long for the day I can report his pain has lessened. But for now, we keep on going. He seems to learn to manage it. I let go a little more each day and let him. Truth be told he might say I'm a bit of a smother yet. But I swear it's out of love.  

We had a fun Memorial weekend just hanging out in Fort Worth--Coyote Drive-in, Water Gardens, home with the niece and nephew.. I had to work on the actual day, but even just a moment here or there to unwind is a welcomed change from say, 400-970 days ago!. 

 

 

For me, I've now started my journey into incorporating EMDR in my clinical practice. I love expanding and learning, and like Wil who had to push that aside, so did I during cancer. Having the energy and excitement to do something new?  I wasnt sure I'd get here again. 

I had an intensive first weekend of training in May, with many miles (years) to go yet for certification. But this approach really resonates with my soul. Tending to the emotional brain. Cleaning the wound. Letting the mind be and noticing it. I've often said chemo, and the likes of most medical intervention, doesn't actually heal anyone. It just wipes the slate clean to let the body have the chance to heal itself. Sets the stage for nature and body systems to repair. So you can imagine my soul shouting "yes" when I was smack dab in the middle of my training weekend and found that this concept is what carries one through, with gentle curiosity, the EMDR process.

We are meant to heal. We are meant for wholeness.  All we need is the right environment and people to assist in cleaning out the wound, to let the scab form. The body can do what it was designed to do.

It was a really tiring, but good weekend. And the Universe had me in mind when a fellow soul sister happened to enroll, without either of us knowing, in the same training!  I'd like to think it was not just coincidence, but more so another intervention, another kindness I needed. 

Tonight I'll keep it brief. I had been half asleep, setting my alarm, checking social media, when I opened up the ihadcancer.com 2016 top blogs post. And there, a few blogs in, was our little old page. As a caregiver who often has just wrote, shut the laptop, and kept running on fumes, with a blog full of edits that could be made (but won't because I've decided it is what it is and reflects that day), I was first surprised. And then, filled with warm emotions. I feel honored to have put down a few words that may have meant something to people outside our tribe.

And, Universe, the quote they picked?  Its based on experiences I've had with some treasured few along the way. The cleansers to my wounds...so my heart could begin to heal the way it was crafted.  

 

https://www.ihadcancer.com/h3-blog/01-03-2017/ihadcancer-blog-awards-of-2016

I know I've kept saying I would someday release some unpublished blog posts. There aren't dozens. But there are a few I didn't have the space for on here emotionally. 

I'm finding, lately, that these little fragments aren't so scary anymore.  If anything, they memorialize a time and place I remember but no longer live in. I see them, but I'm not carrying them all the time.  Below was what I scribbled when I learned Wil's first transplant didn't graft. 

Before I blogged it. There were these few words. 

Much love. 

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She Thought     9/19/2014 

She placed her cell phone, upside down, on the corner of her desk.  It was there, in black letters and bright screen, the news of the day.  She thought, if only I can hide my head away in this cube for 4 more hours.  Hide the sniffles as allergies, chuckle at a coworkers joke until the tears looked like joy.

On the way down the elevator, she breathed deeply and made idle chit chat.  She thought, if only I can make it out the door and slip into the darkness before I fall, tumbling apart.

She had done this many times before already, clouded, sticky contacts in her eyes, balancing the need for a speedy trip home with not getting pulled over for grief intoxicated driving.  A million thoughts rehearsed in her head.  No officer, I haven't been drinking.  I've just found another level to this grief maze.  I just need to get home. How do I get home from here?

But she had driven down "Interstate Unimaginable" many times since the diagnosis, thinking faster than the posted speed. And always made it back. 

She barely made it in the door, without dropping everything. She stood alone in the hall, like she had done 143 days already this year.  

And then she laid right there. In the entry, keys in the lock, dogs barking, heaving her breaths into the laminate floor. 

How does one manage when every day is a new adventure land of rare complications?

She thought. 

But this here?  She felt this. Deep as bone. 

Green

Jenny here. 

Once again, I have contemplated this blog for months.  In my head I have written pieces of it every day.  Honestly, it blew my mind, looking at the blog today, that’s it’s been months since I wrote.  I see I have even saved several drafts on Blogger along the way (perhaps I will publish some "lost blogs" that I never finished at a later time).  I’ve tried to post on our Facebook page our happenings and thoughts, which felt easier. Little snippets of life.   I think this “life post-cancer” piece of things is less written because showing the whole of it is more difficult for me to put into words. 

 

How do you describe the vast lost-ness and big-ness?  It’s much easier to post lab results, share the terror of crisis moments, then to find a way to relay the quietness of living a new life you don’t quite recognize.  I know I have said it before, but it’s a whole lot of soul searching, after the ashes settle, until you get to the work of rebuilding.  I think last year, for me, meant drawing up new plans and getting building permits.  LOTS of ground work before any construction could begin. 

For some reason, the past few months have shifted us, again.  We aren’t as much in the planning stages of creating, we are actually living it out as is—still messy, still unknowns, still times when measurements need be retaken or redone.  Our “house” is bare bones, but there are beams up…and I am starting to see the shape of things that may come. 

We have been busy. We have been out and about. 

December was a big trip up north to Minnesota. Time with grandma. Snow. Dogs. And many miles. 

 

We've spent a majority of time at home though, because we love just being there. There's been some fun along the way too. We are still diggin' Fort Worth and, when we can, like to get out for a stroll, show, or dinner. Every few weeks we go to Aveda together and get our hair done. Wil waits because mine takes longer.  We get breakfast or lunch, depending on the time of day. It's sweet. (Yes, we are THAT couple, and we've earned all of it!). 

We drink lots of coffee. Stay up late. 

It's a nice, simple life at present. 

 

 

Basically it’s this:  every day gets more manageable lately.  The moments of sadness, fear, and bewilderment get shorter, less pronounced, less intense.  The joy and gratitude has been there all along the way, but in the stillness of this leg of things, both possess a freedom now.   I can only describe it as the difference between carrying joy and hope versus walking around with joy and hope by your side.  The shadow of cancer is there in each scenario, the joy and hope is just as strong, but your arms are open to hold on to other things when it's a partner, not a passenger.  

 

Joy…hope…these feel different when you don’t have to hold on to them for dear life every moment of the day.

On Tuesday we spent the day at UTSW for a 6 month check up with oncology.  While Wil has had some follow-ups with other doctors, we had not been back to BMT for 6 months.  He has had no blood work since then either. 

Side note:  The night before clinic this week, I had to ask hope and joy to crawl up on to my lap again.  I didn’t sleep much.  I wasn’t in a state of panic, but the reality and memories tend to flood back at 3am, in the dark of night.  It’s impossible to completely describe.  There isn’t the same fear of cancer, because it’s a known we have with us—always.  But there is a deep breath, a holding of space, for what it means to look forward when you know up close and personal that the worst can happen to you.  I honor that space, and I honor that feeling of held breath, because within it lays gratitude for each day and each next sip of air. It's just hard to sleep while holding it. 

Walking in to clinic was surreal.  Flashes.  Emotions.  Seeing the door that he came in through via transport 3 years ago.  Have you ever felt like you were back home but...not really?

 

After checking in, we were directed to sit in the big waiting room.  I whispered to Wil, “We’re in Gen Pop now.”  In the past we did all our waiting in the BMT small waiting area.  100% masked.  But Wil’s mediport came out at the end of 2016, his counts are normal-ish, and he’s OK.  So there we sat, unmasked, with everyone else.

 

I looked around at the people in the varying degrees of treatment and physical strength.  A few in wheelchairs.  Some with oxygen.  There were all stages of eyebrows and hair growth. The homecoming part for us is that there, everyone gets it.  Without words being spoken, a tip of the head or smile is enough to know...they know too much too. 

It hit me hard, as we waited, the incredible miles we've come. To be here at THIS exact second. 

At one point I realized I was actually sitting in the EXACT chair that I had sat in, the first time Wil was transported via ambulance from the SNF to clinic.  He could barely sit up and wasn’t breathing well.  He couldn't speak.  He had lost most gross motor control.  

Our doctor’s nurse reminded me, later, that on that first meeting, I told her straight away, “this isn’t him,” and described in detail the man they would someday see when he was well again.  My own version of a love song. She said to look at him now…she could see what I had been trying to relay to them 3 years ago. 

Wil has been doing well these days.

Side note:  When someone is post-cancer or post-anything, please know that “well” is a loaded answer.  “Well” often means, there is chronic pain, there are obstacles, there is the shadow of what was…but there is waking up daily, there is love, and moreover there is a growing ability to handle all the hard stuff of real life.  “Well” is all of the above.  And it’s a bummer to get into specifics about chronic issues when people ask, so you start to just say you’re “doing well.”   It sure is nice to have a few people who get that "well" is more about how you are handling things then about anything else.  It’s a thought that has greatly impacted my own life and career post-cancer.  Well is a moving target.

But Wil is well.  There continues to be chronic pain in his feet, from the past chemo that helped save him, and in his eye socket and head from the shingles this past fall.  If you ask him, “how are you feeling?”  He’ll say he is great without skipping a beat.  That is choice, and is who he is from head to toe.  But strangers have come up to him and asked if they could pray for him and his pain.  He is blown away.  He asks, “How could they know?”  His mouth smiles, his laugh is contagious, but his eyes are often tired.  The cane has helped, but his walk is slow.  For him, he’s happy to be alive every day.  For me, each day I am amazed, broken, and rebuilt by witnessing his pain, and spirit to carry on despite it. 

He is still chipping away at classes.  He’s taking courses as he’s able and working towards some IT certificates in things I barely understand.  I dare say, we talk about what life might look like in 2 years.  And it feels good.  I am happy to be working more than fulltime, which means he can take the time to be in school without working right now.  He fought that plan, and me, because of feelings that he should be contributing more, but lately has become more OK with focusing on school and doing well.  There will come a day when he works.  Or a day that he carries more of the load.  Right now, school is enough, and I am happy to be able to support him in doing it.  And the dogs are happy too about having him around!

 

I look at him and it’s almost more than I can bear--the love that has evolved and grown is like no other.  My heart beats fast these days, like those first few years together, but the cadence is sweetly tempered with the comprehension of life’s fragility.   

And me…for three years I have said “life is too short to use the econ button” on my car.  YESSSSS, it saves a little gas, but my Honda accelerates at a moderate pace when it's engaged and I have places to be!  The fact that I have been using it lately…well, it says a lot about where I am with things.  And the pace of life. Slower. Steady. 

 

I don’t need to rush this part.  And it’s OK to slow down and use my energy more efficiently so I can get as many miles out of each tank.  So that, my friends, is what I am doing. 

In just a few weeks I will start a 50 hour class towards a certification I have wanted for years, and finally have the mental capacity to do.  I saved my pennies and cashed them in on me.  It may take a few years to fully complete, but I’m chipping away at little goals of my own too.  I’m cooking all the time, which is centering.  I’m sleeping.  I’m good at just being home.  And I’m well…the kind that encompasses it all the feels.

We left clinic with good news this week.  His counts are steady.  There is nothing remarkable going on.  He will have the standard work up at his 3^rd anniversary on October.  That's 3 more Texas Bluebonnet springs than we thought we might have together.  Until then? Just the regular doctor, as needed. 

We walked away from BMT, with his only stated prescription from his oncologist,  to “just take care of your wife.” 

 

And I think...I think I will let him do just that.

Much Love.

(Pictures from our now annual Bluebonnet tour. Ennis, TX)