Thursday, June 19, 2014

Gravity

"The most profound joy has more of gravity than gaiety in it."  Michel de Montaigne

I've been feeling the weight of things on me the past few days. I like to take charge. Yet, so much of every day has so little to offer me in terms of ways I can control. I laid in bed next to him this morning. Quiet. Peaceful moments. Mornings I need at least 18,250 more of. As we laid there, I couldn't help but let the tears stream down my face. I see the worry in his face. Even as sick as he is, despite his own pain with every movement, the husband in him doesn't want me hurting. As he pulls me into the orbit of his arms, I just can't fathom a solar system without his sunshine.  We both want to fix things for each other. But there is only waiting. Weighty waiting as we hold onto each other and to faith.  Most of this journey is about giving over in ways I had not imagined. 

The chemo has really kicked Wil hard this time. We were at clinic two days straight to try and pump him up with blood to just keep him going. Even after the first transfusions on Tuesday, his hemoglobin was even lower the next day.  Most CBC levels are just plain low right now. So we will be back for more blood on Friday and probably adding some platlets to the list as well. We have come to know the telltale signs of low counts. Labored breathing, fatigue, bruising all over the body. Although the blood draws confirm things, we already know to pack a lunch and for me to tell work I may or may not be able to come in that day. 

Transfusion days...It's hours of sleeping for him, hours of thinking for me. Yesteray he woke up and asked why I was quiet. When I said it was because he had been sleeping, he said that had never stopped me before!  He had his semi-serious face on and said, "truth."  Banter is a little more rare these days as the exhaustion has taken over. Now that he reads these blogs nothing is "secret" anymore (hi sweetie!). I do so love him giving me trouble. 

I know he gets tried of my photo taking. I have this fear though that I will regret not taking more if I stop. I just will never have enough memories of each point in time. He's left me no other option than to snap photos ninja style now. I think they speak more than you may hear out of him or get from my descriptions. 



There is little I can do to take the pain away. I struggle with this so much lately. I want to be able to give him so much more. Someone said to me at clinic, "you have the weight of the world on you."  But a quick google search let me know that, scientifically, this statement is kind of a sham...a linguistically improper question about this planet we are on. Soon I was down the internet rabbit hole, reading things I have no business reading because, frankly, science class was a long time ago and I never took physics. Words like mass, gravitational attraction, F=G(M1*M2/R2), force...if you can define those than more power to you!  I figured I needed to look a little deeper and relate it to what I know as someone who works with people...relationships. I was looking for a word to define my station in life at this moment, a way to explain to you all how we feel. What stood out for me, what stirred my heart, brought tears to my eyes as I huddled in my desk cube at work last night hoping no one would see my desperation...it wasn't a social worky word. The word of where I am with Wil's diagnosis and with relationships...it's Gravity. 

Gravity:  noun
1.  Force that attracts a body towards any other body having mass
2.  Extreme importance, seriousness
3.  Solemnity of manner

Ever since I was pulled into Wil's gravitational attraction, my life changed. Wil and I don't like to rely on anyone but us. Yet as each day passes we are dependent on, and pulled toward, others at every move. You, our wonderful significants in this journey have helped us stay sane, pay bills, hugged us near and far. The universe has forced us to a place of dependence. Of humbleness. Every day I put my trust, my most precious human being, in the hands of others. I sometimes envision out stretching my arms and releasing Wil to them, hoping and praying he is pulled into their life changing force.  We are simply designed to need each other in this life. We can pretend otherwise but we only survive if we let ourselves be pulled close to each other. Gravity is what grounds us. The force of attraction and dependence is what keeps our feet planted. From the moment we make our appearance into this world and until the moment we die, we can't survive this life alone. 

It's been the conversation of the day for Wil and me. How we have been pushed and pulled at every turn relationship wise lately. Some people, even close friends and family, we have tried to pull into our journey simply don't come close, they stay at a distance. Sir Isaac Newton, with all his falling apples, described gravity as mutual attraction between any two bodies in the universe. Its heart wrenching to feel the loneliness that, for whatever reason, our gravitational attraction, our mass, is not equal or reciprocated by those we had expected to depend on....While others we would have not expected have lovingly wrapped us up in thoughts, prayers, and assistance. Leukemia has definitely had its surprises. 
  
We have been offered a clinical trial that is amazing. Only 5 people from our area will be chosen and only 36 in the country. In Europe they have had good results already, but the new med is not FDA approved here yet. Cutting edge. It's the reason we came to UTSW. The trial takes what Wil already needs, a bone marrow transplant, and makes it a better outcome. Less wait time because they can use an imperfect relative match vs hoping and waiting on an anonymous donor. Less recovery time. Less chances he will need steroids again (do you all remember what steroids did to him on a 28 day protocol?  Imagine a whole year of those things...I'm not sure he could tolerate it). And a real fighting chance to beat this thing. No more 30-35% survival rate. With this trial we are looking at 60% or more. Of crossing over that line of more people in his same situation living vs dying. The gravity, seriousness, of his disease instantly improved...his chances of life, of me having a husband to come home to for years to come, almost doubled. 

There is only one catch. We cannot do it alone. We are dependent on someone else to be that donor.  To allow themselves to be pulled into our journey. We are waiting for a gravitational attraction to occur, for the force of love, attraction, between two mass bodies to be strong enough to pull this off. 

Gravity. Force. Extreme importance. Solemnity.  Please pray, keep us lifted in thoughts. But more importantly, speak out to the universe, to the heavens, that gravity won't fail us now, in our greatest time of need. 
 

Tuesday, June 17, 2014

Middle-ness

Jenny here. It's been awhile. As I sit here and type, trying to muster up the will to publish this entry, a goal I've had for a few weeks, I just feel rather empty. I have missed the connection with everyone. I have probably needed to write. Instead I have been doing other creative endeavors to pass the time and keep me sane like knitting, scrap booking, and cooking. You now, things that are good for tension relief but can also be used to avoid the obvious feelings I just haven't had the energy or will to deal with yet.  This entry will be unedited, and maybe a little all over. That much I know. 

Our dear Bella's death hit us harder than could have been imagined. For the first few weeks I cried my soul out. Wil was silent. He was afraid to let in the reality of loss and break down while trying to physically recover from his chemo.  We are holding together, almost 5 weeks out right now, but it's been like no other pet loss we have had before.  Probably because she was in the background of every up and down of the last 11 years. Probably because cancer already had us skimming along near the surface of the floor anyway.  Probably because of the sudden and tragic nature of her passing. 

We had a small and lovely memorial in a favorite park for her. We lit a candle, laid flowers on the bed we carried her home in on the day we met her, spoke her name dozens of times as we recounted memories, released balloons to an audio of her barking as a puppy. 



Wil cried for the first time and said he took the best naps of his life with her.  It was a day of healing. Or at least beginning to move forward.  Who would have known that this in your face dose of mortality would be harder than the past 6 months for us. We are pushing forward. Not because we are awesome at grief or feeling whole again, but because with cancer at our heels, there isn't the same time, energy, or process for this loss. It comes and goes and we just take it step by step. It's just truly complicated...and made life that much complicated lately. 



Two weeks ago Wil had a lot of leg pain. His left side started to swell. He could hardly walk. At his oncologist appointment they sent him for an emergency Doppler of his leg. Sure enough, he had a major blood clot in his leg, causing trouble from his thigh to foot. He was started on twice daily Lovenox injections to thin his blood. They told us it was a good catch. A clot that size could have migrated north. Scary. While the swelling has gone down some, he is hobbling along and in pain with each step.  It wears on him emotionally and physically. He doesn't complain, but you can see it in his face.  It's common complication of cancer treatment and now he will be monitored for it closely.  It can take longer to recover because gues what, when his chemo is going and his counts are low, he will have to back off on Lovenox until his body can catch up.  

Last week he was inpatient for round 3B. He had been home an extra week due to low platelets and being swabbed and positive for rhinovirus. Now is when treatment timelines will be busted more than kept, as his counts don't bounce back as quickly and his body is just tired. We enjoyed one week of good WBC though...to have a break where face masks are optional, movies in public possible and even took the slight risk of ordering pizza made Wil a happy guy despite the leg pain.

Then the B round started last week Wednesday. There are many words to associate with this round that also start with B! His liver has been doing great though and his PH levels came back to normal in record time at the hospital. He discharged Sunday, on time, but not without being swabbed and cultured again due to spiking temps. His temp was normal at discharge, but as we had predicted, based on last B round, his temp spiked after we got home. 

Side note:  We ran into that young man I wrote about a few blogs back, the one with little support. We saw him up on the BMT unit on our way out Sunday. He had his transplant and was looking good!  He too has ALL.  We said "see you in clinic."  No doubt we will. 

It was touch and go for the first 24 hours home with Wil's highest temp reaching 100.5, otherwise known as the cutoff for an ER trip. And an ER trip always equals a minimum of a 23 hour observation/admission which is especially no fun after you've just gotten home. Luckily, the temp came down to 99, then 98, then 99, 100, and back down. Long nights of hourly vital checks at home. Sleepless nights, but I'd be sleepless anyway...I'd rather be awake at home with my hubby in our bed and our dog snoring on the couch as I binge watch 90210 and watch the clock. 

This morning at his clinic appointment his hemoglobin was really low and he is already neutropenic. It explains his labored breathing (you don't get adequate oxygen when your hemoglobin is low) and the fact he spent most of yesterday in bed.  If you asked him, he would say he's tired but OK. You won't hear complaints. It is agonizing to see him struggle along even for short distances. Walking into to clinic was a real task and feat today.  We will be back for more blood tomorrow morning, and we would guess Friday as well for blood and platelets. 

Hours of whirring machines, ticking transfusion channels, and watching him sleep as someone's life force is pumped into him.  I wouldn't and couldn't ask for anything more.  I'm determined to be by his side for as many of these hours as I can. 

Life has gotten into an unpredictable routineness lately. We know what to generally expect, even if that means waiting and expecting the unexpected! The days skate by, one moment to the next until it doesn't.  I would say it's an ebb and flow, but it's more like a glide and crash.  

So much of what we do day in and day out, treatment wise, is now robotic. You either fight for "normal" or settle into the new life. You make the best of it and try to not focus too much on how foreign and removed it is from your old reality.  I don't see him as a cancer patient most of the time. There are two of him though...the sick days Wil and the Wil I've always known. I'm not in a dissociative state, but I have found myself, at times, willingly keeping the "two hims" separated by the roles I play of caregiver vs spouse.  

But there are still moments, in between, in silence, that I look at him. Slow, gimpy walk, hairless head behind a blue mask, pained eyes, irritated and bruised chest port from multiple pokes to access him every week...there are times I still see him with fresh perspective. Neither patient nor husband. I see him for who he really is now...a new person...my Wil who also has cancer.  I remember then all I have to lose and all that I love about him, all that he is becoming along the way, even in midst of unthinkable experiences and unfathomable joy.  And then emotion overflows through the worn out ducts of my eyes.  My heart expands and aches from the stretching that is required to experience him as he is now in this middleness of being. Robotic is safer sometimes, yet I know I am anything but a caregiving machine. I'm a real girl. A real wife. Capable, afraid, and scarred.  I'm living in a new middle too.  I sometimes wonder if he experiences my own middleness, the new duality of me.  

I have heard it said before that scars are the best beauty marks. They prove we are still living. 

That I feel the enormity of this journey...That I feel scared beyond words...That I feel perpetually sorrowful...That I often can't find the words to express myself....That I wouldn't chose not to be here either...I think this is the journey of the person next to the person with cancer.  I'm not the one with leukemia. Yet I feel some sort of bone deep exhaustion myself lately as my head swims with the two outcomes here: life with Wil and life without Wil.  Young enough yet old enough to know I need to build a future for us...but also keep me surviving in the unthinkable.  

I've moved into a new office space.  I'm trying to grow my career as I care for him. Trying to keep connections with others as my life revolves around his health.  Trying to care for myself so I don't break. It's just a lot of stretching. Every day. 

As we draw closer to the end of this middle phase of treatment, we talk about fears more than ever now. The next steps are a little unknown. More chemo?  A transplant?  A clinical trial?  The next steps need to keep him in remission without killing him. We have pages of documents to read this week to make "informed decisions" about how we want to proceed, given the risks and stats.  This isn't usually a disease people recover from if it comes back.  Only 16% of folks get a second chance at remission. It's a feeling of now or never.  Of holding your life out on a limb and trusting. We have a lot to talk about in terms of moving forward and what we want for life.  

We are still breathing though. That's something. His is labored, interwoven with so much pain lately. Mine is shallow, laced and tied up with anxiety.  But the air keeps moving and so do we.  I'm not always the model of calm or peaceful. I'm the model of tenacity. Of getting up every day despite it all. And I'm learning to be pretty proud of embracing myself as I evolve too. 

I had watched a TED talk with Andrew Solomon recently about how our worst experiences shape us. While the entire podcast was wonderful and quotable (we posted the link on our FB page a while back), a few quotes stuck out more than others.  

"Live out loud."

"Forge meaning, build identity."

"If you banish the dragons, you banish the heroes." 

So here we are in the middle of everything. You can't grow in courage without obstacles. You won't find the person of valor inside without fire.  Stop waiting for meaning, let the flames melt you, and shape your experience into something wonderful!  We are more than a cancer couple. We are flawed and crazy, loving and snarky.  We are forging ahead, one step at a time.  



Solomon ended with: "And then invite the world to share your joy."  

So I'm back. Here. Sharing. Even on the days that are complicated and not so pretty. Because behind all this pain is our fight to hold on to joy. It's always my hope that you're sharing and feeling it too. 


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