Saturday, January 17, 2015

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. 

Saturday, January 10, 2015

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. 

Tuesday, January 6, 2015

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.