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. 

Crys(tal)

Jenny here. 

Lately I can't force myself to sit down and type out anything significant, despite the fact that life is ever evolving around us. But today, I’m here.  I always have SO much to say, but I am just more quiet these days. 

Last week I was talking with Wil and asking him if he thought I should re-engage in therapy.  I feel so blessed, so happy, so alive these days. But I also just feel like staying at home and being with him.  I get excited at the thought of seeing people, now that we can do more, yet I am content with just him, in the quiet of our house, snuggled with my little family.  If plans with other people change and we end up at home?  I’m sometimes relieved.  Relieved to be home???  Certainly there must be something clinically wrong with me…I am the party planner, the fast talking, spirited, ready for action, give up sleep for any chance of social fun, kind of person.  In the past.  Now?  It’s the exact opposite.  While I’ve always needed time to process and think alone (one reason I love to write versus talk about feelings sometimes), I am ever more happy in the solitude of home and him, my big guy.  Or with just small group of close peeps.

So clearly, this shift made me think I need therapy and overanalyze (LOL).  Wil was so sweet to assure me that if wanted therapy again it would be a good thing…but that he could also diagnose me himself—cancer seems to have popped me over the line, into what can only be described as, “selective introversion.”  What a funny guy I married! 

I’ve been middle of the road between E and I in the past decade, and my Myers-Briggs type, ENFP, although extrovert, is one that always requires more recharge time…but these new feelings?  Wil says his introversion force is strong and has brought me over to the other side, in his opinion.  Is that even possible?  New immune system for him, new introversion tendencies for me?

Life is good though, truly.  Life is busy these days.  Medically speaking, from a transplant perspective, Wil is doing great.  Counts continue to maintain or improve.  There has been a few blips on the radar, including continued swelling in his legs and higher blood pressure, and they are working to treat those (probably a side effect of some meds).  But his list of meds continues to dwindle and he has not used any insulin in weeks because glucose readings have been fantastic.  His neuropathy is just constant, but he is more active than before despite it. 

Today his CBC showed elevate protein, so we know his kidneys have not liked one of his medications (which is being d/c now).  This led to a urine sample, which led to blood found in his urine sample (we won't know more about all of this until we meet with a urologist).  He is doing well enough though that clinic appointments continue to be weeks apart and his progress continues on all other fronts. 

Side note:  While I could google and freak about our new urologist consult (ok, admittedly I already googled about the test result, inquiring minds and all that jazz...), because cancer will always be a dark passenger lingering in the shadows, it doesn’t hang over us with dread like before.  It could re-emerge at any time.  We know this.  It could never be seen again.  We know this too.  It is true for any of us!  But the constant haze of death has lifted, not because it isn’t there, but because we are progressing emotionally too.  If only there were a test result to show one's heart and the progress we're making on living life despite it all...it would show good results too.

So our conversations aren’t only about vital signs and blood work, and even today with this blip, we have hope and fun plans in the present, over the next month, the next 6 months, and beyond.  We just had a much needed fun visit from Wil’s college roomie that included visiting the Perot Museum and shopping in a mall (first time in 2 years!).  In June we are hosting a small birthday celebration for a friend, and a college friend of mine is visiting too.   Not to mention we are headed out of town overnight, a big leap in faith and a needed getaway.  Close enough to rush home to UTSW if needed, but a road trip over state lines for us and the critters.  A mental break we all need from the fight.  Life.  It’s good.

 

 

 

As many of you know already, today is our 15th anniversary.  We have spent the day in a clash of life experiences that we often find ourselves facing together on this journey...a day mixed with the doctor clinic visit and blood work, ending the day with the results of the urine sample.  Sandwiched in between post-cancer stuff?  Starbucks, breakfast out, shoe shopping, barber shop, an AMC Fork and Screen movie, and an evening nap followed with BBQ leftovers from the fridge.  (Leftovers!!!  It makes me tear.  We eat some leftovers now...remember when we couldn't???  I don't have to cook from scratch every meal anymore, we risk a 48-72 hour window of meals from the past and sometimes get take out.)

 

 

The contrast of life couldn’t be bigger, and the milestone of this anniversary spotlights it so well.

Two years ago, we were half way through our eight month journey to Wil’s diagnosis.  It was the first year, year thirteen of our marriage, I cried on our anniversary, unsure if I’d have even one more with him.

Last year, in the middle of chemo, in talks about transplant, I cried too.  We had made it to year fourteen, but not unscathed.  By this time I had long given up on big yearly anticipations and long term plans, instead, exchanged for the daily joys of just being in the same room with him, whether at the hospital or at home.  I lived for, draped my soul over, the little opportunities most of us miss with those we love when life is less complicated…I was content to watch him breathe, to hold his hand, walk the halls of BMT, and sleep in the chair next to him.  Happy for every small victory.  So painfully aware of the full spectrum of feelings a love and life like ours contains.

Honestly, I’ve continued to cry a lot this past year!  After transplant, the tears never stopped, but they have changed.  In the car, at the bank, in stores, in my shower…so I could hold it together in the places I had no choice.   Holding it together is over rated though, and my tears come all the time now in post-transplant land.  Last night at work I was crying at my desk, never for no reason, and not for any fear or sadness.  All the thoughts about celebrating our anniversary, ALIVE, just hit me hard.  A coworker had come to say hello and there I was, snotty, red, and ridiculous!  I’m just so effing happy and content with life that the tears spill over at the most random times.  And I cry. 

I cry with the amazement and hope that floods me waking up next to him, watching his hair grow (and today be cut for the first time…I was the last person to cut it as it was falling out from chemo), seeing him walk the mall, take the stairs at clinic today, talk trash with Cowboy fans while wearing his Packer Jersey, and even give me some grief in his goofy, geeky ways.  Last week I cried in the leafy green cooler at Kroger, buying pre-packed lettuce again.  I’m a total spectacle in public places and I just don’t care!  Every experiences brings the, never far away, happy tears…Seeing him carry groceries in from the car, shop for his own clothes, cook me breakfast…the list is never ending and now photographable moments to savor and remember.  (Wil is not always so sure it should be documented, LOL).

 

 

 

The thing that no one tells you about the cancer journey is that you will lose some family and friends along the way, people who just can’t be there for a myriad of reasons, most of which, I imagine, involve the fear of death.  No one tells you will feel lost, more often than not, under the weight of it all.

We didn’t know that although we would lose so much, we would find ourselves along the way too, surrounded by, perhaps a more selective, yet sometimes larger circle of the people and near strangers, who have supported us and brought us to year fifteen...two years longer than my worst fears, and now with hope for many more.  Another strangely wonderful intersection of this life.

Traditionally, this year is celebrated with crystal, the first truly expensive present on those lists of symbolic gifts.  Crystal represents sacrifice and investment, clarity and transparency…of knowing each other as well as we know ourselves.

After fifteen years I think we would have that regardless, even without cancer and transplant.  Yet I can’t pretend those two things have not given me the greatest clarity of my life so far.  Crystal just can’t compare to our truly most expensive gift for year 15—life—lent to us by the Universe, once again, on October 9, 2014.

 

The past two years have been our hardest and greatest part of our story.  So today, we toast the state of our relationship, our vows…in sickness and in health…ever so crystal clear...but we also raise a glass to you all, for getting these two soulmates here, and especially to our UTSW BMT family who continues to fight alongside us and give so tirelessly of their hearts.  Cheers to making it to year 15…alive.  To health, however it shakes out physically… emotionally, spiritually, mentally, we are so very intact and cemented, which is also a gift all on its own. 

[Insert ugly cry…you know, the kind I’ve perfected, the deserved tears that show just how much this life can contain if you let it grow and swell and overtake you…evidence that I can hold so much more love for one person than I ever imagined 15 years ago when I said “I Do”…even if it means the tears are guaranteed to splash over to constantly make room for it J)

Much Love.

 

 

 

Lost and Found

Jenny here. 

It's 5:52am in the morning and we're finally headed to bed. I love being on the same schedule with Wil. Love the quiet of the neighborhood in the darkness.  Love this life. Love the deep conversations. Love the corny harassment he gives me. Love the sound of his snore (when it doesn't last long lol). The dogs are in heaven being held by him. Soulfully simple days are these.  

Yesterday we celebrated day +200. I. Cannot. Believe. It. The first 100 were so long and full of anxiety. The next 100 have flown by. We celebrated at Chipotle and even had fresh guacamole. So far he hasn't died!  Lol. I know it seems small. But these have been real risks. And now we are able to brave the outside world more.  We eat fresh strawberries now. 

 

(Day +200 dinner at Chipotle)

First, the medical. Wil is doing great. His labs continue to improve. He's off all steroids. Next week he will have additional tests to get a status on his immune system. If all is well he will be done with breathing treatments too (a preventative he's been on since transplant). AND we won't have a check up for...1 whole month.  It wasn't long ago we spent 25 hours a week at clinic. 

His neuropathy remains. The usual foot issues as well as the weird stinging on his torso. The oncology neurologist doesn't have an explanation. We hope it gets better with time. It slows him down. Makes balance a challenge. But it djednt stop him. Enjoying life!

(First breakfast out in 2 years after clinic)

The other reminder of last year:  His skin is still very dry. Spirit wise he's young these days. More energy and laughter. But his poor skin just looks old. All that treatment was hard on his body. 

I'm busy these days living and doing things that feed my soul in between the usual work obligations. Wil is earning his stripes as an admin assistant to me as we ship out oils and jewelry and manage the paperwork. We appreciate those of you keeping him busy! We are making some dents in medical debts and saving aside a percentage for Hawaii. These things and this time together...I'm committed to making it count. To making it matter. To enjoying the space to breathe. To spending late nights together and sleeping in late. 

Life is good. Very good. Evolving. 

The new pieces of me...I'm finding a little more of them each day...as clinic appointments spread out...As I turn over more to him to take care of...As I agree to let him park the car after 8 months of no driving (heart attack!)...As I let the emotions come and go and flood and dry all along the way. I'm more focused these days on what I really want. Or at least finding more of it. Even if I feel mostly lost!  

Without the constant med checks, GvHD subsiding, less constant cleaning, multiple doctor appointments life can feel strange and unnerving...I drive past Walgreens and instantly feel real panic that I've somehow forgotten to pick up a medication or medical supply.  There's just not as much of those tasks now.  I had just gotten used to the other life and now it's time to change!  It's these moments that remind me I'm changed. That I'm still healing too. 

Time to think.  That's what I have more of now. 

I've been stuck on the writing end.  But Wil and I always seem to fall into random late night discussions like tonight. The kind that help me to at least get out of my head. Some of what I want to say, I can't say here. I need to find a place for it, but this blog isn't where I can be truly free. 

I want to write about the true bottoms of the past year. The heartache of desertion. The perils of rocky relationships in the middle of the wilderness. 

These are the tender parts that remain. 

And the things people don't warn you about in the beginning. 

I feel like there are truths that could comfort others. But to write down the stories behind the stories...the whole of it with even the ugly parts...would cause some pain I'm not ready for yet. It's why I think I'm stuck these days between lost and found. And I'm working on it. Writing on my own, for me, and not to share. 

We both are working on it.  To find a way through the emotional side effects to cancer. To rummage through the remains. 

I don't think there's an around path. Only through it. I'm not sure how long thisay take. 

I'm not sure that the "right way" to say the hard stuff will ever exist. Our out loud wonderings revolve around people we love. Which is complicated. 

How do you say, I want you in my life, but you've been emotionally mostly gone while we burned to the ground and rose out of the ashes and we don't know what is even left?  That, if you want us, we want you too, but we are different people now. That you may not recognize who we are...and we fear you may not even like us the same in our new forms.

We've been out of the loop, hunkered down in the trenches and haven't always been available or engaged with anything other than our own drama. We're ready to reemerge from the cave. But we know lives have gone on without us. We've changed. People have changed. Relationships will need renewal and time. Or be finalized in their new state of being. 

The past two years have brought us together. Brought us emotional isolation. Brought us joy. Brought us to a different place. How does one go back out into the land of "normal?"  What even is that and do we want it anymore anyway?

Grieving the bits of lost dreams and building new ones. Cataloging experiences.  This part of the journey is equally as hard, but more quiet. More private.  

Lost and...at least finding, if not yet found. 

Much Love.