Asymmetrical Love

"The measure of love is to love without measure". Francis de Sales

Jenny here. Being it Valentine's Day, the subject of love is all over the place--media, signs, FB, menus, and people's minds. Everyone seems to measure relationships and love and worth on key holidays like today. 

Wil and I have never been much for celebrating February 14th. We aren't anti V-day. If you haven't noticed I'm completely smitten with the dude. So we haven't taken some stand against the commercialism of the day. We just prefer no crowds, discount flowers, and clearance chocolate. We're strategic!  In years past we would celebrate a few days later, living high off the post holiday sales prices....enjoying an empty restaurant meal. This year we may catch a movie at some point next week...or maybe not!  Life is all about home right now. 

This past week has been quiet for the most part. Wil's counts and numbers continue to either remain steady or improve.  That crumby CMV virus is now undetectable again. We are on the weening period with his last immunosuppressant med. We are holding steady and that means clinic visits are more spread out. It makes for a disorientation of days, for me at least, since we've had a pretty consistent clinic schedule for months now. 

His oncologist doesn't believe the skin rash is GvHD, but maybe that his skin oil glands are attempting to work again. The rash is still there though--itchy, bothersome thing that it is. And no amount of coconut oil or lotion keeps it hydrated. 

In addition, his skin this week has occasionally, each day, started to have a spreading, stinging sensation that has him crippled over in pain for 5-10 minutes. We had an impromptu check- in at clinic on Friday. It's not shingles. It's not anything specific at this point. No ER needed. The only real way, it seems, to get more info on it would be a skin biopsy. But no one is jumping to that just yet. For now, crossing fingers it will improve over time. 

With the days spreading out between appointments, me with more sleep and energy and time, I'm starting to do a few little things for myself. I'm taking on a few new clients. Picking back up with hobbies. Enjoying unrushed showers. And this week, I finally paid for a haircut and color. (It's been well over a year since I paid for one, thanks to the haircut fundraisers and being an "interview model"...all thanks to the marvelous Mindy). It was long overdue, as are most personal things for me in the past year.

Side note:  What did this girl request for a gift this year?  A work bench and a new set of metal stamps. I just love the metal stamped jewelry. It's never the same piece twice. Imperfect each time. A little messy and frustrating and then all of a sudden, breathtaking simplicity when it's done.  I may get that Etsy page together yet as I find ways to define a me outside of cancer caregiver. Stay tuned!

Hair is a big deal though. It can make you feel fresh and new even in the middle of things. I've always been the person who missed out on doing something more edgy. I often scrimp on the salon and choose other things to spend money on. Growing up I either had my grandma cutting my hair for free or I was worried about going outside the very traditional, long hair box. I kept it uncomplicated.  Ponytail ready. A few years ago I went shorter, but still pretty classic.  And there's been nothing terrible about it. It's been functional. 

But lately I feel so drawn to create things and a life of my choosing. Lately I feel a shift towards etching my own happiness.   Lately I'm not so entangled in expectations of others.  I care deeply about relationships, but I'm working on expending energy on me these days.  And the expense for the salon is worth it...There's really no feeling like it...and I need it as a first symbol of putting *me* back into the equation.  While I've known it's important all along and known that I should be a priority too, life in the BMT arena, or any caregiving, is a huge adjustment. And takes time. I just wasn't ready before. And that's ok. No shame. No guilt. No regrets. I'm finally here and ready to connect with this new woman I've become. 

Maybe it's the cancer. The counting of days, breath holding, that has slowly evolved into a savoring of the minutes and learning to exhale. Maybe it's this new chapter we are in...grounded, settled, loving space to just be. Laughing out loud a lot, in waves of uncontrollable wonder and happiness. (Recently I realized it was just a year ago he learned to laugh again. A moment I will never erase). Or maybe it's working 40 hours in a cube (God bless my job with supportive peers and awesome health insurance...but I still look at 3 walls of muted toned, scratchy fabric, for many hours a week in the name of making a living. But don't misunderstand, it affords me a life with Wil, which IS the life of my dreams, so no big compliants here!). Whatever it is, I'm ready for renewal. And it's already starting. I can feel it welling up from the depths and replacing sorrow. 

As I sat in the chair at the salon this week, being unintentionally unhelpful to my sweet stylist (because I have no vision for this type of creative venture), I told her the theme was "I just made it through the hardest two years of my life.  Alive!   I need something sassy." However she saw fit, I was in for the ride. 

And the color got mixed and applied. And I took time to detach from the road travelled in order to just be there, present for the sights and sounds of the experience...the rinsin' and cuttin'...and hair aflyin'. 

And what I was left with was a whole new, fun, sassy cut. Deeper, red and brown hues highlighted by the occasional blonde strands. A new start to this next life. 

As I have woke up a few mornings with the new style, extreme bed head nowadays (on just the short side though,  LOL!), I've had some time to think about how my newly inspired 'do summarizes where I am right now....And how I see love and marriage and the years and the journey. My hair and all those three...Asymmetrically wonderful. 

 (Mindy, you got it SO right!  And I feel more like me than before.)

The defintion of asymmetrical is this:  the absence of symmetry. A violation to plans. Unexpected. 

Per science we find people with more symmetrical features to have greater beauty. So at least up front we search for proportion. And in many biological ways this is not a bad thing. Sameness. 

Even in our search for that mate and perfect life we are attracted by symmetrical ideas, views, and physicalities...yet true identical symmetry isn't really possible...and I'd argue not always desirable.

The core of the human body, mostly bilaterally a mirror of itself, contains this blessing of asymmetry in our heart. Not the fru-fru pink and red kind you give out with candy today, but that central organ in your chest. Those squishy, spongy things that expand and contract to get us oxygen?  Those lungs are situated around that asymmetrical heart, and guess what?  They evolved to an asymmetrical shape to fit and function alongside it. Two life sustaining organs. Nestled around each other. Neither proportioned, but in harmony.  Between each side and each other. 

We can fight life's asymmetries or grow around them. Some years are longer or harder. Some people are given more or less or different struggles. Sometimes you are the patient and other times the caregiver. And there are moments or stretches where one person goes the distance when the other can't. There's nothing to compare or fix. That's the point. Every piece of this existence has it's value and place.  Unexpectedness is hard but not without a powerful purpose. 

My valentine guy remains more of a complimentary force in my life than any mirror image I had hoped to find. Our marriage is challenging because of the asymmetry of us and the circumstances life has given. Because of this we are growing into our lopsidedness to an even deeper hue of sentience. 

The imbalances of life won't be what we seek.  In our humanness we are drawn to the "safety" of symmetry. Who would want disorder?  It's why we are fortunate to sometimes be in a place of unexpected mercy...even if I could go back and somehow prevent cancer, I'm certain, down to my last cell, that as it stands now I wouldn't.  My stomach drops just typing that because the arrival of who we are has come at high costs and pain.  On one hand we can't wait to be less engulfed by the treatment process. Interference with the long bumpy road that just happened to crash into us?  We wouldn't be here...Exactly where we are...and in the space I know we are supposed to be....without the bumps. 

So for you, my virtual Valentine's, today i wish you love without measure and a life full of unpredictable, incredible wonder...scary as it is...that will set your asymmetrical heart on fire and fill your lopsided lungs with a messy bounty of fresh, unexpected blessings.  Breathe deep and feel the rhythm of all your life is right now. 

(There were no Charlie Brown cards with that exact wish, so I hope that will do!)

Much love. 

Undetected

Jenny here.

This time of year will always bring back memories for me and Wil.  Two years ago we had just moved into our house, full of excitment for a new chapter in our lives.

I often think about how starry eyed we were.  Wil was turning 40, back in college finally, pursuing his dreams that all of a sudden felt so clear to him.  He had just finished his associates degree and had transferred   into his 4 year college.  I thought to myself, in 5 years, by the time I am 40, Wil will be done with his degree, we will have a baby, and I might just convince him to move back to Minnesota to start his teaching career.  

Little did we know that, undetected, cancer was already in the works.  And within a month I'd be rushing to the doctor's office, Wil doubled over in pain.  But 2 years ago, on his 40th birthday, anything and everything in life seemed possible.  And then for over 8 months cancer would continue to be undetectable by biopsies and we'd ride the pre-diagnosis roller coaster.  I would feel like we had made it around several twists on that ride.  Little did we know that the major climb and gut wrenching first drop hadn't even happended yet.

So Wil's birthday, one of my favorite dates in in history, other than our anniversary,  is also the marker of how many years its been since I lost my innocent view of what was to come in life for us.  I don't know why, but I often wonder about how long and when cancer started before it was on our radar.

Yesterday was Wil's birthday and it started out with living life on the edge and picking up breakfast at the local donut shop on our way to clinic. I know, we sound like real rebels!!!  But we don't often risk any outside food no matter what the celebration.  Risk takers.  That's how we roll!

At clinic during Wil's blood draw, the nurses, who had been so sneaky last week to ask him what kind of cupcakes he liked, surprised him with red velvet and song.  Wil is genuinely a pretty happy person, but a tough crowd.  He's even and steady but that also means he isn't in need of big productions.  It takes a lot to get him upset or rattled or even surprised.  Despite that, he was very taken a back by the team effort and they had him smiling ear to ear.  And touched.  His motto, ever since I have known him, is "I'm just happy to see another year."  No presents or party needed.  This year that motto means even more.  But the enthusiasm of the staff, their genuine happiness for us, it swept him away too.  It was fun to see.  We deeply appreciate these people who care for us all along this way.

And then we met with Wil's doctor, nurse, fellow, and mid level provider.  We knew the day would include results from all the post transplant, day +100 testing:  the extra blood work, MRI, lumbar punture (spinal fluid), and bone marrow aspiration (marrow and fluid flow study).  And do you know what I love?  The fact that none of them could keep a straight face until they presented the results to us.  Smiles.  Happiness.  Disagreements about who would meet with us first to go over the tests.  Before the fellow even said hello to us, she burst out with "we have good news today."  The rest, the details, important I guess.  In their faces, however, I could already see what I needed to know--hope.

Side note:  It's easy to forget how much days like yesterday mean to those around us too.  The oncologist's nurse said that she was beyond excited and had been checking on results all last week as they rolled in, sneak peeking.  She said the night before her and our transplant coordinator looked through the packet of results.  She said "We hold on to days like this because it's not often we get a day filled with good news to share."  She had gotten to work early and was excited to see us.  

And so the results:

Bone marrow aspiration (BMA):  Leukemia undetected.

Spinal fluid:  Leukemia undetected.

MRI:  T6 mass, no longer detected (some structural damage, evidence that something 2 years ago had grown there, but the mass itself?  Gone.)

Blood Typing:  100% B+ (donor) and Wil's original DNA?   Now undetected

Undetected.

"Complete Remission."

Just as queitly as cancer creeped and came into existence, so do we now move into the next chapter of this journey.  

Our old BC life?  Well, I think I'd have to say it's  undetected now too.  We are new.  Wil on the inside, but also outside.  As his body and medical team have worked to shrink that which has changed us forever into an undetection, so has our former existence shrunk and disappeared.  Life has evolved and there is some sort of real joy we can't explain.  Joy that has nothing to do with the results of today.  Yes, a million times yes, we are happy that we are on the right track, that treatment seems to be workng.  But lately we have come to a place where the desired outcomes, although important, are not as interwined with how much we love this life...how much we enjoy each day...or how much we appreciate each moment.  

We are living life with less fear.  We are not as shackled to those starry eyed dreams because this...this day, every minute with each other...is the best I could ask for...and not overshadowed by circumstances beyond our control (or at least not as often anymore).  

It doesn't end here.  The road is still long.  But that's the point.  It.  doesn't.  end.  here.  Not yet.  

Wil is starting to ween off his last immunosuppressants.  Now is the time to really monitor, even more, for any chronic GvHD.  His blood work looks amazing.  Those cells are growing!  We still have to be ever so careful about him contracting flu or infection.  There are still unknowns and no promises.  Hugging on those nieces and nephews will have to wait a few more months.  But we are on our way to that being a reality by getting off more of the meds.  There is road ahead and we will take that, and whatever it holds, every time.

Wil is OK now to have a few non-crowded community adventures...with precautions he can have a little regular fun at non-peak times.  It's still flu season so we are mindful.

So what did we do on our way home from clinic to celebrate his birthday?  I mean, WHAT do you get a guy who right now, in this day, has been given all he needs...the best gift EVER...the gift of continued life...???

(I know you all had been anxious for this blog and results, but life deosn't wait, so these pictures are the reason we didn't post earlier...immediate fun had to ensue first).

A movie of his choice.  In a  theater...with snacks.  We saw the Hobbit, in 3D...a movie that we missed and that is about to leave theaters.  No crowds.  Just us.  A little piece of normal.

I sat there, snuggled up against Wil, snacks and a geeky movie a-plenty.  I can't lie.  I want so many more of these moments and years with him.  I am not always in this moment.  I still dream of growing old with him.  But I will take whatever this life and Universe affords us and not look back.  And in my head, the last and most important addition to the birthday song that staff sang to him at clinic reverberated again:  "And many more."

We will enjoy these moments, every last one.  I know it, beacause the old life is no longer there, cancer took that, and in its place came a presence, a grounding, to live the life we are given.  No regrets.  No checklists for a perfect future needed.  All we need is here.  Right now.  In is, between us, around us.

Much love.

Eggs, Bacon, and Coffee

Jenny here. 

Today's blog is a relief for me...all I had to put out there and organize were your sincere questions to Wil!  (And maybe smile real pretty when asking him to answer.) Truth be told, my man of few words didn't balk at the suggestion.  Which surprised me. And I sat in tears as I read his very beautiful "simply Wil" answers. 

If you know him, you'll hear his voice in these answers. If you don't, understand he says what he means, in truth, peace, and just enough energy to get his point out. So when he expounds on something, you know it's important to him. And my heart melted, like he does to me so often, when I saw a few answers that had the highest word count :)

Medical wise we have had a busy few weeks with Wil being poked and prodded for samples of blood, marrow, and fluids. Next week we will hopefully get some results and see where we hopefully are with remission. Blood count wise Wil continues to improve. He is still on one immune suppressant but there is talk of coming off that soon if he's doing well. 

That CMV keeps rearing it's little head.  It's detectable but not quantifiable so no worries at this point. Watch and wait. 

Same with his possible skin GvHD. It presented itself about a week ago. But of course, not in a typical way. It looks like GvHD, but didn't show up in the most likely place. And his overall blood work doesn't necessarily support it...either that or it's very mild. Which we'd take in a heartbeat!  

Side note:  Mild GvHD, unlike severe which can be life threatening, is a good sign of strong fighter T cells who, although attacking his face and neck right now, could be contenders against leukemia returning. His main doctor had been on vacation so we will see what she thinks this coming week. For now, steroid cream and...watch and wait. 

But the waiting is sweet right now and involves, on non clinic days, sleeping until 11am, TV in bed, and eggs, bacon, and coffee for the first meal of the day...at 1pm. 

Life is so different these days. In all ways. Yet...good. Very good. I can't quite explain it, but we have found a new level of peace lately in the individual days of post transplant. In between realities.   But more of that in the next blog because this entry is all Wil....

I promised him the only question that was mine was the last one. He likes to think I added in the "awesome wife" question because in our house if he starts out with, "Did you know..." and doesn't answer quick enough, I've been known to interject with "that I'm awesome?"  But for the friend who submitted that one, if you want to identify yourself and save me from Wil's disbelief, feel free. 

What's the weirdest experience you've had during this whole experience?

   

Probably my first lumbar puncture or    spinal tap.  Having to lay down for an hour or so was very odd the first time.

 

How would you prefer people treat you or converse with?  

       

Treat me the same as before.  My brain is not that compromised.  Converse like normal.  I don't even mind talking about the journey. 

   

Do you want to talk about treatment and what's going on? Or do you want people to just hang out and not mention it?

         

Like I stated before, I don't mind at all, but we can talk about other stuff, too.  

 

 

What's your favorite pasta sauce now?

        

Right now, marinara on most pasta.  Cheese on macaroni.  

 

 

What were the moments where you felt the most supported by people?

        

This is a tricky one.  Mostly the few visits I got from friends and family.  There were times that some of them went above and beyond and I was greatly appreciative.  

 

 

If you could go back in time, before cancer, and tell yourself anything, what would you say?

      

Make up your mind and get back into school immediately.   

 

 

What are some ways that your wife has impressed you during this experience?

        

Oh my goodness, how has she not.  She made me her top priority although that is not how it should go.  I don't know how other caregivers did it, but I could not have had a better one than her.  Usually, spouses leave due to the pressure or fear, but I believe she'd be damned if she gave up.  I may be the one being poked and prodded, but she is taking care of everything else including being one of the best advocates ever.   I get scared if the shoe were on the other foot (knock on wood).  I just don't think I would do a great job, but I will damn well try my best. 

 

 

What is something you never get tired of?

       

Sleeping in and being with Jenny.  

 

 

What is the best way for people to support you?

       

Being there.  Taking an interest in what is going on.  Really caring about what is going on.  You don't have to be there 24/7. Hell, you can be there once a month, but have us feel like you truly care because we can sense the fakes.  Oh, and if you feel like you need to ask us or yourself where you lie, your support is probably not where you think it is.   I know that sounds harsh and I apologize.   

 

 

What is the worst way people have tried to support you?

        

I think I need to plead the fif on this one.  Previous answer was partially harsh enough.   

 

 

So many people are inspired by your marriage.  Can you give insight to how you are such a team during this time in your life?

      

Aw man!  I don't know.  I don't think it changed from before diagnosis.  We have always had a pretty strong marriage.  I feel this time has made us stronger, closer, and more awesome.  So I guess it did change us some.  We have always had each other's back and kept each other in check (even now).  No one can pin us against each other.  One of the best pieces of advise I can give is communication.  I know it sounds cliché, but dammit it is so true.  Talk everything out.  Be an ear during those venting sessions.  Don't hold stuff in.  It can kill ya.  I am still working and improving on this.   Also, keep loving on them.  Show them as much affection as possible.  As an Aquarian and an Introvert I have had a hard time showing affection and emotion.  Along with communication, I am working to improve this flaw, but you can't doubt my love and loyalty to her and vice versa.  We just go with the flow and work it out.  Plus, be true to the relationship.  If you seriously not feeling it anymore, get out!  Unless you can work it out. 

 

 

Has cancer led you on a spiritual journey or helped you grow?

       

Not necessarily a spiritual journey.  I know that sounds bad, but my faith is as strong as it was before.  Not that I am saying being on a spiritual journey means you started out with shaky faith.  That's just where I stand.  It did help me grow in my marriage and my knowledge of the medical field. 

 

 

Do you know how awesome your wife is?

      

Yes I do and I know she did not coerce this question *wink wink*.   LOL!  Just kidding.  No, I do know she is extremely awesome.  I don't know how I would be able to go through this without her.   

 

 

What advice would you give to someone newly diagnosed?

     

Hmmm.   Keep your head up.  Not going to lie about how scary the journey can be, but it is up to you on how you handle it.  Keep a strong positive attitude, stay focused on you and the task at hand, make sure your caregiver (if they have one) is taking care of themselves while taking care of you, don't lose faith, and do what the doctors and nurses say.

 

 

If you could go back to the first week after diagnosis, is there any advice you would give yourself?

No matter what, keep a positive attitude.  Took me months to perfect that.  

 

 

What has helped you cope with this long journey?

      

More like who.  Jenny 

 

 

Have your dreams for the future changed since being diagnosed?

      

They may be compromised a bit, but no. 

 

 

What is your biggest fear and biggest hope?

       

You can guess my biggest fear (I refuse to say it here).  My biggest hope is complete remission.   

 

 

What are the biggest misconceptions about the cancer journey (assumptions people make or say about what is like to be in your shoes)?

      

Probably when people with different cancer diagnoses, where their journey was lighter than ours, try to equal it to ours assuming what we went through was the same thing they went through, until I spell out our experience to them.  I know I will never compare my journey to anyone else's, even if they have the same diagnosis.  RIP Devan.

 

 

Is there one moment in the last year that sticks out in your mind the most?

       

Other than the transplants, losing my baby chihuahua, Bella (sorry for bringing that up Jen).  There are times she pops in my head, especially now that we have Violet.   

 

 

What do you think about your life, and your wife, being so public now through FB and the blog? 

      

My life:  I am still alive and plan to stay that way!

      My wife:  She is everything to me.  The best blessing in my life.  

      Being public:  I feel very great about that and feel my wife is doing a wonderful job with it.  

 

What was the happiest day for you in the past year?

The day of discharge in October. Coming home. 

Much love, Wil

Burly

Jenny here. 

If a picture is normally worth a thousand words, this one is definitely worth a lot more to me. 

It says:  Struggle. Hope. Pain. Promise. Life. Death. Fear. And every other emotion word you can think of times a million. It's both humbling and overwhelming to be honest. 

Today, day +100, comes calmly. I texted Wil at midnight. "Day 100!"  And we talked about so many feelings on my way home from work at 2am. Deeply intimate. Which isn't always code for easy or lovely. How our journey is a reflection of the great marriage we have had but also of the stumbles every couple deals with...how much our relationship has grown and changed...the forging acceptance of each other in the moment for what each of us has to give. Committed always. 

I wish I had more energy to give him. He wishes he had more energy to give me. We are learning to embrace the imperfection of ourselves through this process. But we have no doubt we give our all...and that may not feel like enough at times but it's everything...expending yourself for another, sacrifices of love, to me, means we are doing something right. No regrets Wil. No regrets. 

Side note:  one year ago tomorrow he discharged from the SNF. An unimaginable time in our life. This month has already outdone last year by leaps and bounds!  We were only a few months in to this new life, post diagnosis. I was a wee baby caregiver and barely paddling. Today we quietly celebrated with a few friends and family. Played some Heads Up. Laughed. Rested our weary hearts. 

Today we are happy. And everything else imaginable. In this marathon of leukemia and transplant we are at an early mile marker yet. It might not seem like it to others, but we aren't at the middle. Twenty-one more months to go until we can break through the magical "finish" tape of better odds...the stats keep changing as time goes on, as complications emerge or don't emerge.  About 80% of post transplant folks that make it to the second anniversary are alive another 15-20 years. I plan to squeeze Wil dry of moments and days. How ever long!

Today. He's here. He's alive. He's still a burly contender. 

Day +100 contentment. Seeing the road behind, the possible roads ahead. 

Next big stops are biopsy and test results on February 3, 2015. His 42nd birthday.  It will be a memorable day no matter what news we hear. And then on to the 6 month mark in April.  Reasons why I wake up unable to sleep again lately. Reasons why we are still in the fight. 

I'd take this match and him again and again.  

On the wall, in the above photo of us, there's an empty picture frame. We've had it for years. Large. Ornate. I bought it for a few dollars years ago, cheap because it was damaged, and hung it as is. It stays empty and imperfect to remind us of this:  our days, this life, remains unwritten. Open. Burly, heavy...but still intricately beautiful. 

Ready to be filled. Ready to still be used. 

Much love. 

Flutter

Jenny here.  I'm feeling extra snuggly and  tender hearted lately. Totally crushing on my cutie hubby. 

[Warning:  This post may get sappy]

For several mornings now I've woke before Wil, before my alarm even goes off, rolled over and nestled into the pattern of his body. He's always given away all his heat. He's always felt cold on the inside while his body feels like a furnace to anyone hot natured like me. So even with fewer blood cells in that body, he still gives all his heat away. I have no choice but to brave the warmth these days because I don't want to let a moment slip by. I crowd him, cuddle him, boop his nose, smooch his fuzzy head and face as much as he will allow. Or I steal it. I'm not too proud to admit that! He looks at me like I'm nuts. But that's not new either.  

His counts were up this week so the nurse said I had permission to smooch away.  Despite a few days of fluctuating temps, he's had a good week.  The usual aches and low energy, but nothing dramatic. I told him I was happy for that "new prescription."  To which my logical love bug said, "she didn't write any prescription."  Oh technicalities Mr. Clark.  I'm taking all the smooches I can, whenever I can. The time is always now in my book!  

A year ago today he had strength enough in the nursing home to move over and invite me to curl up beside him. He was still mostly unintelligible and immobile, but improving. It had been about 2 months since he allowed me in, mostly because of the toxicity delirium added to the pain. He let me lay next to him for 5 minutes that day before he needed me out to get more comfy. But I've kept that moment as an open invitation ever since. 

Hospital beds are the anti-snuggle furniture of torture for me. But I've always made a way in since then. It doesn't take much to learn how to turn off that bed alarm for a few moments!  Being at home, then, is easy cuddle access you'd think. But cuddling with someone in pain is both a work of art and love. Each day his body has different aches.  Each day stands on it's own to be discovered. 

Today is Day +93. In one week we will reach Day +100. It's a mix of emotion.  Joy, excitement, restlessness, nervousness. I guess it's why I'm feeling extra clingy.

My heart just feels full of flutters. From the moment I wake up and snuggle up, to my now scruffy lumberjack, to the moment my eyes close at night. Love, anxiety, anticipation...Sometimes I get home at night from work and wake him up just to kiss his face. I'd say I feel bad, only I don't. Emotionally I'm in flight most of the day and when I get home to land, I want to see him and put to rest the stirring of all the bits and pieces that have led up to day +100. It's calming to just to see him.  To touch his face. To have confirmation he's there. To satisfy the vibrations of anxious flutter.  I think it's set to stay for the next year. 

It's just hard to feel safe in the traditional, naive, sense of that word. The more carefree, oblivious type of safety I used to gobble up had to be replaced. By definition, safety means avoidance of danger and loss and injury. It's prevention of hurt. 

Safety now is a little more complex and broad, yet moment to moment. It's found in the freedom we have together in the present. It's in waking up and seeing him breathing another day. It's in some deeper trust that the Universe is conspiring in our favor, acting as a mechanism or net, even in the dark moments. It's acceptance of risk and pain, not the absence. 

Safety in the flutters. Those irradic waves of wonder. In how my heart feels every day with him. Crazy, unpredictable, rapid, alive. 

Lately I keep dreaming about riding roller coasters. And that feeling you get when your car first drops after the initial climb, hands in the air, eyes closed, hair blown, silent scream, stomach in your throat feeling--both terror and exhilaration. I wake up, neither in shock nor fear, but, I guess, fluttered.  That's how this leg of the journey feels to me lately. It's how I feel when I'm confronted with others dying around us then waking up feeling the warmth of his life again. 

Side note:  Sometimes when he's asleep I whisper to him, "please don't die."  While I mostly accept the varied realities of the cancer and transplant journey, I still can't imagine living without him. Not too long ago he heard me and replied, "I don't plan on going anywhere." 

Feeling life in flight patterns makes me think about the somehow in all things. I guess there is no soar without a lot of flapping. And even though I've felt ackward in my ability to, forgive the pun, "wing it" through new territory, doubting my grace, I lately more accepting of how we've done this journey. We, I, have done it our way. In the middle of flight you have to find your own flutter rhythm based on the winds.  No one can know from the ground exactly what you're up against. We had to find a way to listen more to us and less to critique. And then discover that it's more about being carried along then directing. 

I think most of us know there are stages of grief. But there are layers to acceptance too. And walking back through the events of last year lately, I'm at more OK letting the breeze move me along a little bit more. Letting the Universe conspire more freely.  I still whisper to him at night and grab every kiss I can, but I'm sleeping better. 

"The feather flew, not because of anything in itself but because the air bore it along. Thus am I, a feather on the breath of God.”  - Hildegard von Bingen

Someday I may just get that feather tattoo on my wrist I've been putting off...I don't want to forget these mysteries that make life so full of worth. 

Much love. 

Whirls

Jenny here. 

We feel like we are whirling here today. The ups and downs of cancer...it's not new and we aren't alone in if...we take them more in stride and our focus is better after all this time. But there are still days we whirl on the inside while tears flow on the outside. 

Today marks the 8th anniversary of my dad's death. So it's an emotionally charged week already. I grew up surrounded by his illness. The majority of my life has been intertwined with an important man I love fighting for life. I've come to accept the blessing of preparation his life afforded me for this road with Wil. At first if felt so unfair when Wil was diagnosed. Illness can happen to anyone.  This I know.  But there was still anger, like I've had enough medical drama in my life before I even left home at 18, seriously universe? As with everything else, those feelings have evolved. My sweet dad...he lived life with a smile on his face every day (often a smirk for the trouble he was cooking up to keep his prankster status). It's what's made this year even more challenging...working through other depths of dad grief while entertaining the traumatic thoughts of losing another sweet man in my life..yet, at times, having grown up the way I did have me built in coping skills. 

No matter what the point in time, the high, the low, good news, bad news, unstoppable love, unimaginable loss...living with illness is one wide, gaping, tender place of vulnerability. Every day. Vulnerability is this strange place of incredible strength and unfathomable exhaustion, and it will continue to wait on you until submission. Circumstances will tie you up until you open wide. To pull up a seat with vulnerability...It's not really a plush recliner. It's more like a wooden pew. Supportive, functional, keeps you awake, but not easy to sit with for long periods of time. So you learn to move in and out of the seat of vulnerability. Such a spot of purpose in the absence of comfort. You stay long enough each visit to work on acceptance of life and continuing to grow.  Some days it takes you to your knees. 

Wil had been feeling mostly ok as of late. We are at Day +89. Soaking in time at home. He's still pretty tired most days but has been more witty and sarcastic, which is thrilling!  All this smooth sailing gets us comfy. So it made this morning at clinic quite a surprise when his temp was 101.3.  Yesterday he felt fine.  Last night his temp was normal. 

We are hoping to avoid a hospital stay. At this point they are running cultures, doing a chest X-ray, giving fluids, and starting double antibiotics. We are assuming, and hoping, it's just a common virus. Meds, essential oils, fluids, and rest are on the schedule for the next few days. 

Expect bumps. Expect the unexpected. Enjoy each day. That's the motto right now and we're living right inside it. 

While Wil was inpatient, one of the funniest calls I received at work from him was this: "I got in trouble with my nurse for socializing."  Ha!  My introverted guy was being social with two other warriors and visiting rooms. My extrovert self smiled inside and out. At that point in time Wil was at a low himself. He had been there so long with no end date. He was feeling deserted and alone. It was nice feeling the joy of crossing paths in the hallway with positive people.  So when he didn't naturally meet up with then he started popping his head into their rooms. 

After you discharge, you start to look for those familiar faces at clinic as you cheer them on both for them and also, secretly for you too. Every treatment plan, body, and outcomes are uniquely personal, but if cancer buddies are doing well it's a hope boost. Sometimes you lose track of people and just pray they are in good health, in dark moments you fear they are gone from the world when weeks roll on and you don't see them. 

Yesterday we found out one of those peeps is in complete remission!  Free to roam about the world, return to work, and continue on.  I can only imagine the layers of feelings hearing that. My heart was soaring all day!  In a single diagnosis your whole world changes. You change. Then you are set free to get back to the world and things you love.  I hope to get to experience all the mixed feelings of that day. Way to go Shandy!!! We are SO happy for you. 

Side note:  Driving to clinic this morning I had this thought...although Wil continuing to improve and someday get to that point too is exhilarating because I won't miss early clinic appointments, Dallas traffic, or a sick husband...the amount of time if have with him every week is a true gift. The thought of him going back to work and not seeing him that much is something I'm not ready for yet either!

This morning, as I sat scrolling through Facebook updates as we waited on Wil's labs, my heart sunk.  There it was. "R.I.P. Devan."

I read it out loud. I saw Wil's head drop. 

Devan was Wil's other friendly face that we overlapped BMT stays with on several occasions...Someone we've been crossing paths with since that first time over summer when I wrote about the tall young man alone at clinic with no ride, pre-transplant.  

I clicked over to his FB page hoping I misunderstood something. We JUST saw him last week. Struggling with skin GvHD, but walking, talking, eating pizza. I asked him about NYE plans. He wanted to hang out with friends. All I could say was "take it easy and take care of yourself."  Young. Trying to live life. 

Wil's been painfully more quiet all morning. It took about 2 hours for him to verbally respond about it. He said "I'm sad. But it also makes me scared too, you know?"

Yes, I SO know that double dose of uneasy. 

We take all sorts of precautions. Yet I know anything could happen at any time no matter how hard we try. Not everyone takes as many chances as maybe a young guy would, but there's no guarantees either way. To survive my energy is allotted to Wil first...generally worrying about your own battle, spending  energy on your fight. But you are always wishing wellness and safety to those around. You may not know each other for long, but there's a level of knowing that transcends time and words around the BMT halls. Devan was a sweet guy that you thought about, even worried about, a little bit more. Always here alone. Always dreaming big and smiling. Always roaming around despite nurse objections. 

This weekend he won his battle over A.L.L.  I bet be lived fully all the way up to his last breath because I think that's how he tried to walk his path. I think I'll still be looking for him at clinic in the coming weeks until it really sinks in. Rest in peace fellow warrior. 

Much love. 

Silent Night

Jenny here.

It's Christmas Eve and I am ever so struck by the difference a year can make.  I have started, and restarted, a blog this month at least three times.  I would start out with something like "no big changes" only to be in the ER for over nine hours with Wil running a fever.  Then I would start out with "We've had some bumps in the road" only for things to calm down.  It just became more manageable to do short updates on Facebook that were current time rather than wating until I had an hour or two of uninterrupted silence to blog.  I apoloigize to those we love, and who keep us close at heart, who don't have Facebook.  

A little medical update:  Today marks Day +76 of this crazy ride.  Decemeber as been up and down in some respects, yet when you have gone through your roughest stuff at the beginning of the journey, it certainly feels more...I can't say less scary because I will never get used to the text message that says "temp is 100.6" and the rush of adrenaline, the 30 minutes to get home from work, the throwing anovernight  bag together "just in case."  I can't say I worry less...maybe I just worry different?  I can freak out and breathe at the same time now.  I can organize an impromtu trip to the ER in a flash without forgetting a single thing even in the throws of fatalistic thoughts about the multiple catastrophes that could happen.  I can stream together intelligible phrases of medical history on no sleep without a pause.  I know what to expect from the process even when I don't know what the issue or outcome will be for him.  I have a caregiver mode that operates right alongside the wife melt down mode.

So we had the ER trip earlier this month.  Everything was found to be OK and his oncologist attributed the spike in temp to coming off the prednisone and his body readujusting to making its own cortisone again.  He had lost his appetite, had a fever, felt tired, irritable, achey.  All possible symtoms of flu, so it was good we had it checked out, but it made for a terribly long night.  I am happy it was nothing big.

Side note:  YES! He is off prednisone as well as cell-cept which were both immunosuppressants...what does that mean?  They are less worried about GvHD.  Immunosuppressants serve a vital role in the process.  Suppress the GvHD possibility.  However, they also make it harder for his body to produce cells which keep your cell counts low.  Low cell counts often equal exhaustion and blood transfusions.  He is still at risk for infections and deathly complications from things like your normal flu.  The process is SUCH an art!  

The CMV (think mono virus) counts had gotten very high so we started last month on IV infusions at home.  The CMV copies had come down to almost undetectable so we backed off the infusions to once a day because, again, the drugs make  his WBC and neutrophil counts drop.  But backing off the IV infusuions made the CMV rise again.  He has had to have some neupogen shots to stimulate cell production, but it's worked well and his counts are on the rise again, slowly.  In the mean time, we pump him up with units of blood.  We try to stay home away from the germs.  I am the crazy co-worker who sanitizes your desk when you are not looking, spritzes essential oils towards your cube at every cough, and gives not only the eye, but a friendly reminder on hand hygiene in the bathroom when you aren't washing right.  

Sure, we have had some 11-13 hour days at clinic, sometimes weekend labs, but no hospital, no GvHD...so we feel lucky.   And the best news???  His blood is now 100% DONOR DNA!  His blood type is now B+ and his immune system is healthy donor...plugging along to produce enough, but donor.  Next big bench mark?  Day +100.  Not out of the woods, but enjoying the view and seeing a clearing.

This past week he was in a lot of pain, belly pain, body aches, nausea, dry heaves, low appetite, constipation, diarrhea...GI upsets all around.  I was a nervous nelly, always on him for vital and symptom checks, but after a long weekend, and bothering the oncall doctor a few times, we were able to get fit into clinic at 7am Monday morning.  No symptom is too small not to discuss with his team.  Again it ended up being nothing serious, and probably just a little GI virus...or (GULP) that egg sandwich he ate last week after clinic from a fast food restaurant.  IV fluids and blood...another 13 hour day at clinic...and he was looking good again, feeling better.

Side Note:  Seriously??  We have been SOOOOO careful and NOT eating out at all...one egg sandwich because we left in a rush from home on a clinic day where he had already taken insulin so he needed SOMETHING to eat...my heart dropped when they asked if he had outside food as a possible explanation for his tummy woes.  I felt terrible...at first.  Then I took a mindful minute and thought about all the other patients who risk more with no problems.  Wil wasn't upset.  He loved his "treat" and wasn't distressed about the GI disturbance now that we knew it wasn't serious.  And his doctor wasn't lecturing...just narrowing down the possibilities.  Deep breath.  I am not in control of everything and life still has to be lived, right?  We did the best we could that day.  I do the best I can, for that moment, every day.

I sat in clinic this week, watching him sleep.  I don't get to do that as often now.  He sleeps in our bed and I am either at work, caught up in something in another part of the house, or sleeping beside him. But it's not often I get hours to look at him.  For a 6'4" guy, he always look small asleep.  

As I tried to caffenate myself to stay awake, after only catching 3 hours of sleep in between work and clinic, I remembered how much adore his quiet, restful body.  How much I love keeping watch.  How grateful I am to see the rising of his middle as he breathes.  How lucky I am to sit here with him during this whole process.  How the role of wife and friend continue to evolve each day.  How alive he is while facing so much.  How strong he is in intent even when his body has been ripped of muscle tone and balance.

In the past month several people have reached out to us who either have been recently diagnosed with leukemia or have a loved one diagnosed.  I am no authority on leukemia.  My heart sinks every time I hear the diagnosis, flood of feelings beyond words.  Internally, dropping to my soul's knees in silent prayer.  I feel an automatic kinship, they are no stranger now.  I want to wrap my arms around them.  I feel humbled they would tell ME...Someone they don't really know, something so big.  I want to tell them the things I hated hearing..."Just have hope."  or "It will be OK" or "one day at a time."  It's not that those statements don't have truth.  But I know the road is long, the miles to get to place of partial acceptance of the new life encapsulated in medical procdures, devastating treatments to the body, and real terror of loss.  So those statements were benign to me--neither helpful nor unhelpful.  All I find the words to say is, "it won't always feel like today." It isn't always easier, but it will always change, it will feel different moment to moment, those first months of diagnosis are a blur.  Hold on.  You'll have just enough of what you can survive on.

A year ago Wil was in the throws of hallucinations.  He thought his bed was a rocket a ship, that he had lost his shoes forever, and that every time I left his side I had decided to leave him forever.  You could hardly understand a word he said.  He couldn't feed himself.  He couldn't walk.  At night was the worst.  He was more agitated and saying he wanted to die.  I never REALLY slept.  I held his hand and tried to orientate him to the present moment.  

During Christmas Eve day, 2013, I was "picking out" a nursing home...from the one and only option that would accept a big guy who had been labeled a problem from the last home.

And then the night would come again and I sat in his dark room alone with him, bright city lights casting shadows across his body, the only "holiday" lights for the occasion, singing Silent Night, praying he would have even just a few hours of peaceful slumber for himself.  Hours would not happen, even med induced...but there were moments of calm and sleep.  And then the upset and confusion would start all over until morning.  It felt like time was suspended when he was quiet.  I wouldn't trade those moments for anything now.  

There have been many silent nights since then, thankfully.  And afternoons.  And mornings.  And times at clinic, like this week, when I felt swept away in the moments of his stillness, his face, with soft stubble, nestled into the recliner as blood dripped for hours.  As I watched folks from all walks of life in infusion chairs, at all points in the journey, with varying obstalces..one of the gifts I have been afforded this year is being able to find peace amongst all the noise.  Focus in the middle of chaos.  Hope as the equal twin to any reality.  Unending love in the midst of mortality.  And I guess, at the heart of it all, those are the greatest things I could wish for others newer to the journey.  But these emotional shifts only happen through the course of silent nights, sleepless nights, crazy nights, snuggled nights...and every kind of night in between.  But it happens.

All month I have been dropping to my soul's knees when I hear the song Silent Night.  Whether its the HS choirs singing at the cancer center or the song popping up on the radio, yes, I am the crazy woman sobbing in the crowd at Kroger because of the Muszak version, tears streaming down my face before the first verse begins.  The most Holy nights of my life have all happened inside hospital rooms this past year and it's not lost on me how much those nights have changed me forever.  But I am so thankful for each day we are home now too.  

We are trying to enjoy each day as a whole.  Sure, there are moments where we lose sight of the present, get annoyed with each other (we are together most of the day, every day!), or wish for this phase to just be over with already.  But it doesn't take long to come back from those times.  I never respond to his "I love you" with "I love you more" because that just sounds silly now.  I love him as much as he loves me, albeit very different ways at different times.  There is no measure and so no competition.  We are more a team then ever before.  We enjoy the dull, the muted parts of every day life.  "Average" is quite amazing.

We are enjoying the holiday month by taking drives through neighborhoods with lights, sipping coffee through the Prairie Lights exhibit, and watching movies.  We decorated the house like we were having company and planned a holiday meal even though I will be working much of it.  We opened up our gifts a few weeks ago.  Life is short.  I wasn't taking any chances that we would miss being home to do that this year! 

And so, at 2am one night, after my work shift, I gave him the opportunity for a clue by opening a piece of his gift.  A package had arrived earlier that day.

Side Note:  When Wil was inpatient he had talked about things he had always wanted to do in his life. It's funny to me that we are both band geeks who have never played a single song, in our 15+ years, together!  So when he mentioned the dream to play drums a few months ago, it put me on a search to find a used set for him as a surprise.  And I did!  

I knew the package had drum books in it and I knew his used set I purchased on special on Black Friday was ready for pickup.  I also had given up the hope of total surprise, knowing that getting the drums home and set up, for a man who never leaves the house and tracks my schedule now, was impossible.  And like I thought, he took the bait and opened the box.  And was shocked.  He couldn't believe it.  I told him I knew his core strength and coordination have taken such a hit through a year of treatment and I was hoping this would be a way to regain skills and have fun.  

And for me...I picked out my own matching gift...a guitar...something this woodwind player has always wanted to learn.  My heart is full when I think about the chance to make music with the man I love for many years to come.  Something we don't have time to wait on any longer. Something we have ample time to work on now that he is home.

Merry Christmas to you all...who have stood by us through the silence, hugged us from afar, and validated me when I felt anything but whole...we are overwhelmed constantly by the memories of 2014. Quietly humbled.  Speechless.

But for us, between the drums and the guitar, cheers to fewer moments of peace and quiet in 2015 as we rock out this next year of recovery.  

*Potential band name submissions are now being accepted* :)

Much Love.