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.