Ash Castles

“Some things in life cannot be fixed.  They can only be carried.”  Megan Devine

Jenny here.  Let me start out with, we are good.  I am good. Health is good. Life is moving right along in interesting ways, always. 

This, my friends, is a very long overdue blog post.  Last I checked in, we were headed for THE Day +365 (October 9, 2015).  I've started writing this in my head a million times. I profess that vulnerability is strength and that darkness is OK, but in my own life, it's still hard to wait the night out and be honest in a world consumed with chasing the unicorn and rainbows kind of happiness. We are so very happy these days, in arrays of color you might not associate with the word, while we are stumbling through an unlighted path. 

I’d apologize for the length of this blog, but this one is for me.  To document the place I'm at so I can remember it later. If you are curious about life, year 2 after diagnosis and transplant, when life gets quiet and when life starts to get a different real, then read along with me!  Or if you are looking for mostly fluffy stuff, scroll through the summary of recent pictures, they are pretty great in and of themselves. 

Day freakin' +365:  To say it was anything but fantastic?  Well, truthfully, it was that and much more.  More richly colored.  More painful.  More wonderful.  It was more of everything than either of us expected or have been able to hold without MANY tears.

The day started out with a trip, cookies in hand, to UTSW BMT floor.  In many ways, this was a highlight from the day for both us.  The floor, now in a new hospital, looks very different from the one we spent a total of 6 months in last year.  But the feel…that’s made up of the people who work there, and it still felt like coming home.  

(Insert pause, start messy tears)

(365 Cookies! 10/09/2015)

Wil’s face says it all from the pictures below.  These people saw the worst times, knew the worst possible outcomes, but loved and worked fiercely.  These folks, in a lot of ways, will share intimate parts of this journey that no one else will understand, but us and them. 

(UTSW BMT staff 10/09/2015)

And their faces said it all too.  We wish we could have seen everyone!

A few nurses kept holding his arm, telling him how good he looked, how they would never know he had transplanted, not once, but twice.  It’s no wonder we’ve seen the clinic nurses and his oncologist high-five.  I can say he’s a walking miracle.  You can read these words and celebrate with us.  These folks though, saw him when he looked like death, felt like death, and was brought to the brink of death to be born into the new immune system he is still growing.  A big calculated risk. And so, between us, we shared glances, smiles, and a knowing…this knowing…he’s still alive.  And it’s an amazing mystery of which to be in the presence.

(Wil on 10/09/2014, day of transplant #2)

That night we had dinner and play time at Dave & Buster’s to celebrate his "birthday."  The people who should be there, the ones who truly “get it,” were there (thank you!  We know there were some far away peeps that would have loved to be there and we knew you were there in spirit).  

Wil didn’t sit down the entire night.  Wil 2.0 is super social.  SO social he forgot to eat.  He’s happy to be alive.  

By the end of the night he could barely walk due to the damn neuropathy.  I wasn’t sure if we would get him in the car!  Not a complaint though from him…he had one of the best days of his life.

(Last picture of the night in the car)

A few weeks later, on October 23, 2015, after the usual battery of tests and new BMA, we found out he has continued remission.  He had the first set of immunizations to celebrate the good news (since his immunities were all wiped out with the conditioning chemo and radiation pre-transplant)!  You would think after all he’s been through this would be the easy part…but he was not excited by this milestone!  

(Wil 2.0 is also extra vocal and expressive!)

 

But since then we've enjoyed nights with friends and family. It sometimes feels so unreal I just cry. Little normals that haven't been normal anymore. 

He was, however, the happiest guy in the world on Halloween, decorating, passing out candy by the handfuls, and wearing a costume he was so excited about that he told NO ONE beforehand.  All in all, October was a great month.

(Spy vs. Spy Halloween night 2015)

Side note:  It was a great month, yet…there is so much darkness and loneliness that comes with post-transplant too.  For me, more than before transplant, for sure.  (For Wil? It's different. Our two experiences and processes are unique).  You go from being constantly supported in the hospital, to secluded at home so you are protected from germs, to emerging to the social world with fewer people in your life, feeling less connected to those around you, but you're ready to start living.  (This has been hard to understand, hard to say aloud, even harder to write out, but here goes...). There were people we really wanted and needed there at the celebration, but you can’t force people to hold the day with the same importance or make sacrifices to be there.  We’ve been absent, and have felt somewhat useless for 2 years now, and people have their own lives…they have been moving on and illness is a real drag.  And now it looks like we've made it to the other side and people breathe a sigh of relief (unless you are us staring down the actual stats of the importance of him making it to year 2-5 in terms of survival rates, we've got a ways to go, we breathe better, but it's still a lot to hold).  Day +365 was more important than our wedding day (to me) and more important than the day he was born (to Wil).  It turns out, it is not as important to everyone else.  I, we, are working on not chasing love so much, on not begging to be in people’s lives, of trying to grow where we are planted now and take it personally.  It’s hard to let the hurt in, not act a fool, and impossible to find the right words…you know, words to the feelings you want to speak but know will hurt the person when you say them.  They are my truths and most people are not asking for my opinions (go figure), and I get that. As a wife though, and Wil’s biggest fan, I felt like a mama bear and wanted to take away the hurt of missed RSVP’s and the “no’s.”  It’s still so painful to see him carry the weight, of all the things we lost in our proverbial fire.  To see him trying so hard to get back what we lost.  So we put on heavy metal and picked our hearts off the ground. Life is short and, odds wise, could still be much shorter...so we try to let go...of hurt feelings, but also sometimes it means the moving forward from people we've tried to hang on to...you find out what and who are your true foundations when your life burns to the cement block. 

Today...marks our 2 year anniversary with UTSW BMT.  Today is the day he was transferred on to the unit and it all started getting real.  I've known all week what THIS week meant. 

Have you ever watched Survivor?  In the last episode or so, the remaining survivors take a long walk, down a path, to pass by the torches of each person who left the camp.  It’s a silent and introspective stretch to contemplate all they have been through, all that has transpired, and all they have learned.  I feel like I have been making that walk lately.  Past the milestones, dates, and memories of the last two years.  It's been a quiet and emotional time. Wil has not been in the hospital a whole year now. 

I’m sleeping more now, like a solid 8-9 hours a night.  I’m feeling more alive and energetic.  I’m just coasting through the quiet days with Wil, soaking up the time before he returns to school, less encumbered by medical visits and errands now.  Wil is taking care of me more.  I have a partner back. It's amazing. 

(Insert everyone cheering and congratulating us).

Yet the trouble with this leg of the journey is:  I’m sleeping more, I have more energy, I’m coasting, I’m not merely surviving…free to finally feel the exhaustion of 2 long years, free space to think, freedom to be overwhelmed by the facts of ALL of this in a way I haven't had energy for since before diagnosis—the fact is I almost lost him, a few times.  And it was traumatic to watch him decompensate so quickly. But I didn’t lose him.  And not everyone is that lucky.  I should make every second matter. Everyone is looking for us to be happy 24/7.  And we are, mostly…but it’s…complicated.  Hard.  Scary.  Sad.  Still. Enough good now to be relatively hopeful, yet enough miles to go to be nervous about making longer range plans.  

(Insert survivor's guilt. I get it now. It's so real.)

I have these intense dreams lately of sitting in a pile of ashes, atop the foundation of what was our house.  There I am, dirty, undesirable, exposed to the elements.  I’m there, trying to set up china pieces on the floor, in what was our dining room, for a dinner party.  I sense, to the point I am exasperated in the dream, that the people attending will expect everything to be the same as before the fire.  They will need wine and hors-d'oeuvres.  Music.  They will need good will and cheer. And so I begin my preparations… anxiously attempting to build walls out of the ash.  Desperately trying to wipe the ashes from my face and clothes.  I feel the stress of the ticking clock.  They will arrive soon.  I'm frantic. 

And each time I have the dream, it never works.  The walls don’t erect.  I cannot find the food.  My tears only help thicken the ash into a glaze on my cheeks.  The people don’t show. And I feel relief that no one has arrived.  Because I feel ashamed of what's left, how little is left of what I recognize. And then I feel rejection swell up that no one has arrived.  So I lay there on mountain of debris, paralyzed in the enormity of the moment, looking at the open sky, ash particles suspended in the air I’m trying to breathe.  I inhale what was my life, holding it in my chest, knowing it will sicken me to not let it go, but wanting to keep it with me a little longer.  And so I exhale a cloud of dust, finally.  Letting stillness come, followed by the darkness that is the everything of what I feel in that space.

I’ve been absent, angry, anxious, and emotional.  I’ve been unable to find a way to say the truth out loud (of how you can be gratefully broken and lost without needing to be found) while everyone around cheers in excitement for us making it this far.  It's a miracle. I know it first hand. And I also know this next part of healing is harder than the rest.  

I’ve come to a place in grieving where I realize just how marginalized the role of caregiver can be, how isolated the process of moving on can be…it’s not that I don’t celebrate every day.  More than anything I feel overly attuned to the moments.  Yet that is a sliver of the post-transplant experience.  A mere part, a tiny fraction feeling, the part everyone wants, but not the whole of it.  I don’t require or expect anyone outside of it to understand completely, or to DO anything about it.  Yet, I need a way to honor this segment and the realization that this rebuilding part feels like my very own ash castle of a dinner party.  

And maybe, just maybe, I also hope that knowing and sharing might help someone else to not trivialize the vastness and the depth people walk through, even when the outcome is in their favor.  That there is still grieving in living. It might make you uncomfortable to know the darkness, but it exists.  It's real. Powerful. Worthy of acknowledgment. 

The favor we were lucked with, was born out of the fire of a life once lived, and died, and has come at a cost.  I'd pay it a million times over, but I need to say it's a cost that keeps expecting repayment, long after you might expect. 

And if you’re willing to sit in the ash pile?  In the still darkness? If you're able to lay on the floor with hope in your heart, but silence it so the sadness can be honored?  Then you’re welcome here at our castle anytime.  There’s no fixing to be done, no spirits or walls to be lifted or repaired, but we’ll always accept help in carrying the load and sorting through the rubble of our gutted life.  It's the less glamorous, but most important, part of rebuilding.  

Much love.

 

Unbridled, Undone

Jenny here. It's my fourth attempt to finish this blog. And tonight, I think it must be done. It's just been too long and too much. 

Lately, I imagine Wil thinks I'm overly distracted. Overly emotional. And he sometimes feels like I'm not listening to him too well. He knows I'm often tired. And with grace he forgives me. Yet, I still see the look and know he's confused. He's so happy. So social right now. 

If behavior were just face value, he'd have it right. I can get moody and inattentive. I often ask for him to repeat things. Stare off into space, just smile and nod...or at my worst moments, get grumpy and short with him. While I'm usually pretty even, I don't know, the past few weeks, I'm just on edge more. 

Side note:  Could it be the anniversary?  Could things be so good I'm adding drama to the calm?  

Thankfully, behavior is rarely valued at what you see and, in my case, not at all what I want him to see or experience from me as a partner.  I'm

SO happy he's here. SO thankful for each passing moment. And sometimes SO annoyed. Alas, married life. And more normalcy. Ups and downs of my own making now. 

I'm not disconnected from him at all. Or upset with HIM...at all. Or it's not my intent to be that way. Yet I do feel these growing interruptions and agitated buzzes more present in my brain the past few weeks. I feel "blurred" because I'm so focused on...everything...all the time...all at once. And yet?  Sometimes focused on nothing...at all. 

It starts as a relentless intunement with the whole of it...a vibrational pull towards creating meaning out of even the microscopic bits of the day. Not everyone gets this second chance. I want the most of it all. When we learn about another fighter who has died, it throws me off the horse. And I want to make sure I'm really here, really stringing together this new chance.  (There may be a twinge of survivors guilt here...from a caregiver point of view...because life is good for us most days now. And I grieve for others that don't have their loves in physical form anymore or those that are losing someone to addiction, infidelity, etc). 

So life now...in crowded restaurants, Wil flowing out a stream of words, excitedly, about the world he lives in...I want to hear him...but without fail, a song may come on that I cried my eyes out to last year, and then all I can see and experience is the stark contrast between the man in front of me. Smiling. Laughing. ALIVE. And the words that are booming, and taking me back, from the song now inside my ears. So loud are both the sight of him and the soundtrack of my world last year, that they almost drown each other out. 

I can't keep up with his words. Too lost in the total experience of being right there. With him.  I can't keep up with staying "intune" to the seconds. 

The touch of his hand on mine and I no longer recall what I wanted to say anyway. 

Sensory overload ad I try to assemble the pieces of my life with him in something that MEANS something. 

We've been dating a lot these days. Like a little old couple. Walking the mall, sharing a cookie, catching a movie, strolling a park at sunset with the dogs.  The little things. So nice.

We did act more our age in August and went to an OUTDOOR, germy, concert. People. Sitting on the grass. Late night street tacos afterwards. 

His face. It says it all.

Medically, his labs looked AMAZING a few weeks ago. Near perfect. This month will include a BMA and extra blood work. ECG. Lung function tests. If all is well, and blood work remains good, no need for any more BMA's. Ever. He'll also get his first immunizations (remember all that was stripped from him prior to transplant).  Each month he's taking less and less Prograf. Even his constant neuropathy is less intense. 

Fingers, perpetually, crossed.  Next week we reach Day +365. 

So it bid the question from his oncologist:  "When do you want to return to school and work?"

And this, friends, is where the tide turned for my psyche. The better life gets, the better he gets, the less anxious I should feel. Right?  Not. Soooo not. 

Unbridled. Undone. In each emotion. You can guess which one of us corresponds to each of those!

I'm not ready. I'm so happy right now in the routine we created this past year. The amounts of time with him. Every day. My breath stops just thinking of not having this time any more. This respite. 

Yet at some time soon I'll have to let him go. 

He's already doing most errands and housework.  He's joined Tai Chi, a gaming group, goes to pub trivia. He's outspoken. Kind. Sensitive. Fun.  

And I feel a little lost in it all. It's like forever, or what feels like it, he's been in the dark. Not ready. Hiding. And then BAM. One day he woke up and realized cancer changed everything. So he might as well get living. 

And I'm still a puddle. Of happiness. Of fear. Of grief. Of...fill in the blank. 

I know he needs to move forward. Please don't say to me, "wow you must be excited" regarding this transition. Because this wife isn't ready for her baby to start school. I'll get there. I just think that for so long I've been so focused on him and in survivor mode (and I got damn good at it!) that it seems this next leg is for me to heal now. 

I've spent a few weeks thinking "I just want to move forward with him!" to coming to this place tonight...a place of space. A place of knowing I'm in uncharted territory again and all that that means. Knowing I'll grow "simply because the space is there" now for me to find my way. 

But hell. It sure isn't easy. 

So it's time to let my internal compass lead. A time to let myself be ungrateful at times. A little less centered if need be. To feel less guilt when I'm undone and breathe...how valuable that nothingness of air is to our survival, yet I try to fill it! You can't force space or now. You have to rest and trust and notice. I'm free of so many demands now, at Day +359. I think I'm more fully unpacking those last 2 years now that I do have space. 

Enjoy this poem by Judy Brown that I've been clinging to as of late. 

Much Love.  Especially to you, Wil, for just being in the space with me.

FIRE ~ Judy Brown

What makes a fire burn

is space between the logs,

a breathing space.

Too much of a good thing,

too many logs

packed in too tight

can douse the flames

almost as surely

as a pail of water would.

So building fires

requires attention

to the spaces in between,

as much as to the wood.

When we are able to build

open spaces

in the same way

we have learned

to pile on the logs,

then we can come to see how

it is fuel, and absence of the fuel

together, that make fire possible.

We only need to lay a log

lightly from time to time.

A fire

grows

simply because the space is there,

with openings

in which the flame

that knows just how it wants to burn

can find its way.

Sandwich, Sammich

Jenny here. 

When you marry someone you take a vow of commitment. Financially. Emotionally. Physically. All will present you with opportunities to feel nuts. And grow. 

But let's face it. The hardest things about marriage can be the nitty gritty, day to day, lifestyle and family differences you face. After all, you're only taking two completely separate people, from two equally weird families, and trying to meld them into a cohesive unit!!  

I make lasagna with fresh parm and mozzarella. Wil grew up using American cheese. I believe the movie 8 mile needs to be alphabetized before "A", he thinks it should go in the "E" section. He likes mayo. I grew up on Miracle Whip. 

And then there are those handy meals between bread. I say they are sandwiches. Which Wil likes to be silly and call them sammiches. 

Tomato, tomatoe. Right?  

Side note:  Speaking of tomatoes, the first time Wil cooked for me, while we were dating, he made spaghetti marinara. With green koolaid. Upon the first bite, he asked how it tasted. I told him it was sweet, different than I was used to...almost like ketchup (I'm a huge ketchup lover, so this was not a deal breaker!). To which he replied, "it is ketchup."  Mouth. Open. I had never had spaghetti noodles covered with ketchup. But in Wil's world view, as I would learn, tomato products exist on a continuum. All interchangeable. 

Yesterday we received the results of Wil's bladder tumor biopsy. We had a great 2 weeks while we waited. Seriously great. I may have lost some sleep the last few days, and we both felt nauseated on our drive to Dallas, but overall we were ok. We made it. 

We were prepared either way. Peppered with joy for the extra chances we've already had and joyful...even though we know more possible cancer is a constant reality. 

This blip gave us more chances to talk about the future. About day to day goals. We organized the pantry and did meal planning as a team effort (Wil is quite the house husband these days!). We saw an animated movie. Hung out. Ate more eggs and toast and had coffee. Lived our life. I'm so proud of the "emotional space" progress we've made for ALL of the realities. 

So many life annoyances just aren't so important anymore when you carry with you the miracle that he's alive. And Wil 2.0 is on fire. He's a new man. 

But even in our OK-ness, we made sure to plan our day strategically yesterday. Lunch with family before the results and a visit to a friend afterwards.  The reality of the realities...I'd be crushed (for a while) if it were bladder cancer. I'm human. 

We may never agree on condiments or ingredients on an actual sandwich/sammich, but this we do agree on:  life is undoubtedly a series of struggles, so plan to cushion the inevitable pains with the goodness you can grasp...and hold on. Take a bite. Chew well before swallowing. Cancer or not, you'll constantly face heartaches, if you are lucky enough to be living. Don't be surprised. Pack a lunch for your hard stuff. 

And so we had lunch with little ones we love. And knew that no matter what the results of the biopsy, we'd be surrounded with support at our friend's house after.  Making the in-between, the whatever-it would-be, merely a middle ingredient to the day, to our life. 

On the way to the appointment yesterday (which Wil drove to in rush hour!) we talked about how this layering of goodness has actually been what saved us all along the way. Gosh...We've had to really look for it sometimes though. Reframe. Travel the darkness. But it always showed up. And kept us held together. For every time we felt "how the eff are we gonna handle this?" we somehow found a way to make it a middle and not an end. Even if that meant scheduling a walk before chemo and an ice cream and TV time after. It wasn't usually big stuff. Just constant. Sometimes you even get an extra surprise when the middle is pleasant. 

And the middle just happened to be sunshine this time around. 

The tumor was benign. 

He'll have a routine urology follow up in a few months. A few more weeks of healing. But he's ok. 

We are less than 2 months from the his stem cell anniversary. We've passed the anniversary he admitted last year. 

Next week would have been year 1 since the first transplant. We are still slowly decreasing his Prograf. Goodness. 

Our life is transforming daily. But isn't yours?  Courage isn't about not being afraid. It's finding the resolve to seek goodness anyway, to sandwich up your heartaches, and deliberately savoring all the collective elements as equal parts of this life's sustenance plan. 

Much love. 

Awake

Jenny here. 

Yesterday was Wil's bladder surgery to remove the tumor they found during his cysto. We had been prepared that, after the surgery, he may need a catheter at home anywhere between 3 days to 2 weeks, depending on bladder function. I'm happy to report he peed, a big Facebook announcement last night hehehe, during his recovery room stay.  So he was released without one at all!

His pre-surgery EKG was described as "beautiful."  With all the pieces of his body that want to fall apart on us, I've never questioned the strength of his heart. It IS absolutely beautiful. That is true. 

The surgeon told me they removed a lesion a little bigger than a quarter. No others were found. While it doesn't look to have the classic appearance of bladder cancer, it (my words) looks funky. He said it's better it's been taken out, either way. 

The thing about cancer is that often the treatment that saves you, also puts you at higher risk for other cancers down the road. We know this is the reality. We hope for the best. 

Wil is doing well today, post-op, but not loving the restrictions on activity for the next 2 weeks. He had just felt so much more motivated to move in the last few weeks and now needs to rest. Just last week he had googled and researched household management and how often to do certain chores. One night he organized my shoe rack. And took me on a video tour of the walk-in closet while I was at work. Silly guy. He's also doing all the laundry. And dishes. I'm a kept woman. And he feels great helping our life be that much better by his efforts. So, cutting back now, for the time to heal, is bothering him a little. 

Some have mentioned the wait, for what this tumor could be, being hard. Waiting 2 weeks for results doesn't change life much at this point for us. Even the wait yesterday feels so different than it used to feel. I saw other people around me, in all places of their own process. And I thought, "I'm actually ok.  I've got this. We've been through worse." 

As I watched the opaque glass panels shift above me at the hospital while he was in surgery, reflecting surroundings, I felt a lot of peace. Not the absence of worry or fear or sadness, but peace all the same.  That glass reflected momentary images but it's general properties weren't changed by what was moving around it.  I hope to live, at my core self, this way. 

Sidenote:  I broke down and got a Fitbit too. It's been an interesting biofeedback experience. Yesterday, waiting, my pulse was as low as it is in deep sleep. The peace I felt was real. I've got a graph to prove it!

I often describe our life now as cloaked in the shadow of death. I hope you'll understand that this feeling, the knowledge, the reality, the fragility of life for all of us...it's powerful and, get this, positive. We savor more minutes than we used to and laugh more and hold on to goodness. It's not heavy (most days) unless I add more layers on to it myself...it's just one part of this experience that we have with us, daily. 

Last night Wil said he was so happy to be awake.  He was talking about coming out of anesthesia. Surgery or non surgery day, lately I see this sentiment in his eyes all the time. I saw it over and over again when we had nieces, nephew, and my sisters spending time with us this past week. Through neuropathy pain and limited (but improving!) mobility he walked the Perot Museum, played Just Dance for hours with the kids, cooked breakfast for everyone, drove us to the drive-in theater, and had a blast. 

This man. He loves life and the people who let him in...he doesn't let go praying and trying for those that shut him out either. I think this depth can be scary for some people to be around. Fearless love. That's how I would describe that beautiful heart. It's an amazing thing to experience when you are around him these days.  After the family left he said cancer has really opened his eyes to what matters. There's no time to wait on who and what's important either. 

A friend, who I was talking to about this centered living that comes with the death cloak, sent me the evening gatha they do every night at her temple. 

This. I think this is what I'm trying to articulate.  May we all live our days awake too. 

Much love.  

--------------

Let me respectfully remind you

Life and death are of supreme importance 

Time swiftly passes by and opportunity is lost

Each of us should strive to awaken

Awaken

Take heed 

Do not squander your life

Float

Jenny here. 

I used to not know what to do with all the tears I've cried since Wil's diagnosis. Tears of every hue and feeling. But gallons nonetheless. Forgive the long intro to the medical updates today. I'm still working some of this out in my own head and heart. As I sort through, snapshots of summers past keep coming up. 

One summer, Wil, who doesn't get his face wet in the shower, let alone swim, was swindled into going to Hurricane Harbor with me and a friend.  After much persuasion. That first water slide down through a dark tube on a mat, and the scene that ensued at the bottom, I will never forget. Face splashed Wil, hit the water pooling at the end of the slide, hard. Flipped his mat. 

What transpired, and how I responded in the next minute, was not my proudest wife moment. 

Picture this. 2 feet of water. Teenage lifeguard. Big 6'4" man, wet face, crumpled scowl, floundering, legs kicking, arms paddling, absolutely sure he was drowning. 

The teenage lifeguard was confused too. 

"Sir, stand up. Stand up sir.  I need you to stand up." 

I had jumped out already, at first not knowing what was going on, and could only stop and stare and let out a small giggle. There he was "drowning" in water that probably came up to his knee if he stood. But people have drowned in less, but my big strong guy was flapping around like a trout.  His fear was real, his data on the situation, in real time, just skewed. 

Side note:  he hates this story.  I'm up early this morning to post before he wakes up!

Truth be told, although I consider myself a good enough swimmer, my favorite part of water is the ability to float. I love the freedom, picking up feet, eyes closed, your head back just far enough to cover your ears, the world outside becomes muffled, and your neck elongates. Coolness. Suspension. Support. Effortless.  It's a physical feeling I wish Wil could experience too. Yet in my emotional world I often find myself floundering in "2 feet of water" when I could just as easily float or stand in a situation. But when you're in it, really in it, all that you feel is the struggle and fear sometimes. 

Float:  v. To rest or move on or near the surface of a liquid without sinking. To be buoyed up. To be buoyant. 

The science is there though. Each us, physically (and let's add mentally and emotionally) have floatation features. It may not feel natural, but it's simple. Anything that is less dense than water can float. And our bodies, roughly speaking, are about 2/3 the density of water. Sure, muscle mass, lung capacity, overall composition...we could get technical and say floating is easier for some then others, just by what we are born with or how we change over our years...yet the message for me is straightforward...everyone is born with the ability to float, by design. 

I looked up a beginners guide to floating. While there were tips on how to improve technique, the basics were this:  Relax. Stretch. Have confidence that physics is on your side. Notice your breath. Breathe deeply. Oxygen makes you more buoyant. Look up. Hold your breath for a moment. Feel your weightlessness. Repeat. 

People drown all the time. Even though our bodies are equipped for the opposite. You can't convince Wil he can float. Many have tried. And I SO get that now, get his fear, get why he hasn't floated. I may physically do well with it, but emotionally I struggle in the water of doubt sometimes too. Over and over again in this life, when my sense of everything is to tense up, stop breathing, and freak the hell out...it's because I have forgotten my innate abilities to be suspended in the moment. 

Medically speaking, the week has involved moments of sheer weightlessness. On Tuesday Wil had his 9 month clinic visit. He's still B+, counts are almost all in the normal ranges. His oncologist is pleased.  We don't go back for another month!  We couldn't stop smiling. Each month, over the next 6 months, we are hoping to decrease his ProGraf dose on a path to being off it for good.  We are on the home stretch to a first year, stem cell transplant, anniversary. 

He is in such a happy mental state too these days. We've been quiet as we enjoy every drop of summer. He's running errands, driving around town, making me breakfast (and the bed!) while I'm in the shower. Handing me coffee to go on my way to work, paying the bills...this girl is already getting used to this!  He has a FitBit now to keep him motivated to move (that neuropathy is still there). He's taking walks. We are having dates. Grateful for all of that. 

And even more, his gentleness has increased tenfold. If there is a baby within 50 feet, he will find them and tell the parents how impossibly wonderful the child is...he says hello and wishes people well all throughout stores and clinic visits. It's like no one is a stranger these days. 

Wil has always been sweet.  Always loved wide and deep.  The depths of his compassion and tenderness, however, have just...grown. Relationships and time mean more now. He's here waiting folks, if you've been distant for whatever reason, he's here. Waiting for you.  Loving you from afar. And hoping. (And ready for FitBit cheers too!)

Yesterday Wil had a cystoscopy of his bladder and CT of his kidneys. For about a month he has had microscopic blood in his urine.  The preliminary CT results showed nothing more than your common small cysts that anyone can develop. Not concerning at this point. Then came the cystoscopy (small camera catheter is inserted into urinary track to look at bladder). I was just in the middle of amazement at what I was seeing on the monitor (I like medical and science stuff)...and there it was.  A single white flowery looking spot on the bladder wall.  

Tumor. 

Do you ever drive by a highway accident, and although you feel sad seeing the wreckage, think "wow, glad it wasn't me."  That's how we feel a lot. We know others in our situation, with a first failure to graft, or even those with success, often get infections, complications, or other issues, and die. Wil is nothing short of a walking miracle. Truly. When those around us pass away, I feel it deeply. A whole lot. And I even get a little survivors guilt. What makes us any different, to have this extra time together?  We aren't any more deserving. It's just what it is, I guess. And we live with the reality that, being no different or more deserving, life is short. Things can change suddenly. Take no day for granted. Hug those you love as often and as hard as you can. 

I'm trying to stay in float mode, we both are, so we don't sink in disappointment. I'm trying to remember this news, this water, isn't as deep as what we've been in already. As I hold to all the good that is still in this fight. We are lighter than this pool of liquid.  Lighter. And as a beautiful souled friend always says, we're not done yet. 

Wil will need surgery to remove the tumor, most likely in the next few weeks. We are thankful his counts are great and that he's feeling well. They will determine after the biopsy what this tumor is or isn't. Of course we hope for the best and know anything is possible. 

I used to not know what to do with all these tears. I used to be more fearful of being pulled under and drowning. I float on top of the sorrows, most days. Yesterday though, I felt my limbs get heavy. I felt the pull. I'm still someplace between tense and relaxed today. Of course I want this to be benign. To be another blip. What's in my control is not the tumor. A new opportunity to workion my buoyancy.

And so I hold to this:  the water, in its own natural state, will always be there to support our given ability to float. If we let it.  We are regular folks and will deal with whatever comes. 

We invite you to float along with us. In this, or whatever else in your life, that is making you believe you can be pulled under. 

I'll  leave you with a few floating tips from the pros. The physics are on your side. You don't have to BE buoyant. You are already. 

Much Love. 

__________________

"Gently press your weight onto your shoulder blades and let your head relax into the water as if you are resting your head on a pillow. Or, if you are in streamline position facing the sky, press the top of your hands into the water. If your legs always sink, reach your hands above your head. By reaching your arms above your head, you are creating a longer support above your waist, which gives you more leverage for lifting your legs up to the surface. At the very least, it will bring your legs higher in water. 

"Engage your abdominal muscles. Use your core strength to lift your lower body toward the surface. You might think about a string attached to your bellybutton that is pulling your torso to the top of the water. The link between your mind and your body is powerful. If you can simply imagine the string pulling your belly and your feet to the surface of the water, your muscles will probably organize themselves and make it happen! Kick very, very, very gently. Okay, so perhaps this is cheating a bit. Don’t kick so hard that you have forward momentum. But very light and gentle, alternating leg movements will help force them to the surface. Of course, as you do this, stay relaxed."

Read more at: http://www.swimoutlet.com/guides/how-to-float-for-swimming/

Sparks

Jenny here.

Happy 4th of July!  I am at work tonight while Wil is watching movies at home with the dogs (our typical holidays are spent this way since I work evenings/holidays/weekends).  Yesterday, we went to the drive-in theater and saw a double feature of Inside Out and Jurassic World, with fireworks in between.  It was a gorgeous Texas night, 85 degree with a slight breeze…lawn chairs, corn dogs, popcorn, and people watching…so we had our holiday fun already (it’s summer in Texas...the people watching alone is entertainment, especially for Wil, who spent so much time in captivity last year).

Medically, we are status quo.  Wil did a 24-hour urine collection this week as another step in the whole “why is there microscopic blood in his urine” round of tests/procedures.  Results from that, and an upcoming CT scan plus Cystoscopy, will hopefully tell us more by the end of the month.  His neuropathy was actually a bit better this week.  We are not sure if this is due to his decreased dose in Prograf (YES!!!  You read right!  His oncologist is starting a super slow taper on his last immunosuppressant which means we are on alert  to watch more closely for GVHD, but also in hopes he will eventually be off it for good) or other med changes or the essential oils or just time.  Whatever the cause or combination of causes, he has been in a little less pain on his feet and it makes a huge difference for his spirits and mobility.  We won’t be back to the clinic until later in the month, so more news in a few weeks…

As I watched the fireworks start last night, I couldn’t help but look around. We were surrounded by crowds of people, everyone taking in the experience and lights together.  We had stood in the concession line for 30 minutes earlier for our snacks.  And I couldn’t have been MORE happy to be there, or more happy to be WAITING.  In a CROWD. With him.

Cue tears.

Sad tears mixed with the sheer joy.  I am not sure tears are ever JUST one feeling.  “Tears of joy,” I have discovered, always have an element of other feelings as well.  Whether it be relief, exhaustion, grief, fear, sadness.  Last July we were pre-transplant (nervous). Now we are at a movie (happy)!  Relationships are changed, moved on, some seem lost (grief).  I hope to never forget this day and have more of this time with him (hope and fear).

Looking at his face, sparks from the sky reflected on his smile…just 2 months ago we would have not put ourselves in any crowd, anywhere.  In my life of rushing, the common lesson learned is to embrace the WAIT and embrace the emotions.  To take in a big breath of germy air in and understand, at a deep level, how amazing it is to have an immune system and this day!

So as the fireworks began last night, I took in more than the lights through my blurry eyes.  Visual snapshots of this strange new world. Nothing has really changed, except the filters through which I now look out.

“Do you remember our first 4th of July?” I said.

16 years ago Wil and I, along with my roommate at the time, went to see a marching band show.  We had only been dating a few weeks.  As the sun set, the fireworks began and a few shells rained down over us. He asked me if he could hold my hand.  That night was the first time Wil put his arms around me, holding me tight to protect me from falling debris.  As the combustible light show fell through the sky, I...I was falling in love.  With him.

These days, sometimes I reach for his hand without asking, not just out of habit, but because I am also afraid he might literally fall while walking, from the neuropathy, or to reassure him we will be safe from the emotional debris that comes painfully close after all he has been through physically and psychologically the past 2 years.   I hold
it a little tighter and longer now to know, for real, that he is still here, right now…like if I don’t let go I’ll have him forever.  We are still walking this life together.  And there are still sparks.

If you haven’t seen Inside Out yet, do.  While I might be giving a little away here with my favorite scene from the movie, I do hope the concept, if you’ve been reading this blog, is nothing new.  The movie is a great reminder that all memories are many colors, that sadness is a gift that helps you find help and comfort, and that true happiness cannot exist in a vacuum and must allow for all feelings to be present to be real.  Sadness is a true gift and helpful.

Did you hear that?  For those of you who have weathered all the waves with us and not taken the easier route of forcing a bright side before dawn…thank you for acknowledging the power of darkness. We still have ups and downs in this healing process and still sometimes weep over the plans and our life B.C.

If you are reading this, and in your own journey of cancer or ANYTHING else (so all of us, right?), take heart in knowing there is nothing wrong with sadness, even when the course is coming out of the woods.  Take heart in fear, in disgust, in anger…they are there for a reason and just part of your brilliantly colored light show in the night, a multidimensional explosion…of being human.  If anyone tells you to be positive, to be happy, to find the gift, that everything happens for a reason, that you won’t be given more than you can handle…it matters not that it may eventually be truth...find someone who understands your NOW and how to wait with you and how to sit still with you through the struggle and ALL feelings, whatever order they
come in or look like…real joy will come about only through honoring the kaleidoscope, and not before.  Let THOSE kind of people hold you.

And know, without a doubt, that your deliberate wholeness will be found through the thick of it…in the amazingly deep, profound, and lovely shades you nurture and admire.

Much Love.

----------------------------

INSIDE OUT

[Riley is on the verge of tears after attempting to run away back to
Minnesota after feeling very homesick]
Riley: I... I know you don't want me to, but I miss home. I miss
Minnesota. You need me to be happy, but I want my old friend, and my
hockey team. I wanna go home. Please don't be mad.
[Riley's mother and father stare sadly at their daughter]
Mom: Oh, sweetie...
Dad: We’re not mad. You know what? I miss Minnesota too. I miss the
woods where we took hikes.
Mom: And the backyard where we used to play.
Dad: Spring Lake, where you used to skate.
[Riley breaks down in tears]
Dad: Come here.
[Riley, her mother, and her father all embrace in a group hug, consoling Riley]

Borrowed

Jenny here. 

It’s been a big month for us.  Medically we are still in limbo about a few things and have a specialist appointment this week to try and sort those things out.  So, you guessed it, more procedures and scans.  They are making sure to rule out any other cancers but no appointment was needed ASAP, so that's a hopeful sign so far.

Overall Wils energy is very improved. You can hear it in how often and robust his laugh has become. He's taking charge of household chores as much as he can muster. I'm so very thankful for the help. You’ll not hear him complain much, but the neuropathy is constant and still wears on him.  He keeps trying though.  And keeps going. 

Socially, in the past few weeks, we have had friends visit from out of town, visited the Perot Museum for a second time, hosted a Walking Dead marathon at our house, saw drive-in movies, and took a trip out of town to Eureka Springs, AR for a few days with the pups along for the ride.   All of these events have given us opportunities to [try and] let loose.  To feel a little bit like “regular folks.”  And I’ve learned it’s something I, in particular, am still working through.  More than anything I want to be regular, but even these slices of normal don’t add up to regular in the way my heart can sometimes can still ache for...I love our little life....pain inevitable, struggle optional…this I know, but struggle is still what I choose sometimes as I navigate through a field of emotions.  I am not always patient and kind in my moments of anxiety. 

Wil doesn’t say it often, but when I admit I’m scared about having fun, out in the big scary germy world, because all of it involves risks I cannot deny, he echoes back.  He gets it and feels it too.  And I so appreciate our mutual candor, grouchiness, and support we have between us in these new times. 

Together. We push through and there are these glorious moments when I almost forget that this is a living, breathing miracle to be here doing these things.  I like the forgetting part sometimes because it’s a less emotionally charged state of being.  It’s comforting to slide into the well worn regular complacency most of us live in each day...like blue jeans you’ve had for years.  And it’s not a bad thing, I don’t think.  It’s like a respite.  Living in the moment for his mere mortal is wonderful...dreaming, anticipating the future a true blessing too. I start to see us down the road in this life, moving out of DFW, leaving the hustle and bustle of the city.  It's like every vacation before cancer. Freedom. 

But then I see him walking slowly, struggling with his feet, needing to take his time and watch each step since he can’t feel his feet.  I watch his face and mood, trying to stay chill…with himself...he’s in pain of some sort nearly 24/7...those chemo effects still linger and may always be there (although I hope it will lesson in time).  I see the acknowledgement on his face that while these sweet victories of vacation, social time, and travel are amazing, they are also reminders of what is different now...of what has been lost…of how this new body can't do everything he'd like it to....all colliding at once.  

This.  Watching him. It leaves me in a solemn space between inspiration and sadness and hope and heartbreak...all colliding at once. 

I wanted to title this blog “Untethered.”  I had broken my cell phone a few days before we left town and decided to take myself out of the land of social networks and availability until I got back and could get a new phone.  It was nice to be “out of pocket” (as my Texan friends would say) for a few days.

Crossing the state lines of Texas into Oklahoma, then into Arkansas…incredible.  We have not left an hour radius of UTSW in over 2 years.  Despite the anxiety, our time off and trip were needed and wonderful. 

Eureka Springs was all I had hoped for in a tiny, Victorian home, an artsy place in the middle of the Ozarks.  I could really see myself living there if I had a job that could relocate.   I have these fantasies about a little 800sq foot house away from everything.  Peace.  Quiet.  And the Ozarks provide the most gorgeous back drop for this dream.  Crooked, steep, winding streets...and trees everywhere! 

Sidenote:  All my life with Wil, when shopping for cars, I could never get excited about a specific model until I made sure Wil's long legs could fit into the drivers seat. And it's ok. We e always managed to compromise. These days, when we think of leaving Texas, I can never allow myself (yet) to dream about relocation without first seeing if a BMT transplant center is close enough. Can't we just pack up UTSW with us wherever our hearts lead us to go?  It's still early in this new life...(Jenny, just take a breath!)...and we are not anywhere near ready to let go of supports we have here yet. But I can't lie. I looked up cost of living in NW AR. I'm smitten. So we will definitely be returning for another visit. 

So we're not untethered. I've always fought that feeling of being tied down. (You should see my resume!  I have loved contract work because I can come and go...to a bunch of jobs!). So I still struggle to find that same freedom space under the new rules of this life. This cancer thing...it's something you carry with you forever. It's something, at least presently, we work at gaining stamina to hold while also moving forward. Each moment feeling a little more borrowed than before you had it. 

Borrowed.  That's the word. That's what these snapshots, this new construction, feels like. It's what it has always been though. For all of us. And we're already, despite the fear of time being too short, despite worry that "the loan" won't be as large of a sum as we had hoped, that we continue to soak up all we can...in most ways, most of the time...to love the actuality of this new life must accompany the acknowledgment of the borrowed time we all take as we live it. If that makes sense. 

For now we stay the course and plan a few more short getaways. Work on letting go. Work on being with the process.  

Stay tuned. Clark's. On the loose. 

Much love. 

Thornecrowne Chapel

Christ of the Ozarks

Leatherwood State Park

Beaver Dam

Dinner on top of the Crescent Hotel (America’s #1 haunted hotel) while taking in the views. Can you spot Christ of the Ozarks?

During the rainy times and the evenings we cuddled up in our A-frame cabin at Pond Mountain and even managed a slight hike to the pond with the dogs.  As usual Tyson was not a fan of nature and bugs. He preferred his view of the Ozarks from inside. Violet however, ran and rolled in mud. 

Happily Ever. Now.