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. 

 

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. 


Sent from my iPhone

Kept

Jenny here. 

Today Wil and I celebrate our 14th wedding anniversary. 

On our wedding day, I remember us both laughing when the minister said "for richer or poorer."  At the time we were flat broke. We have looked back at that photo many times, at the laugh the photographer caught, and smiled again. 

These days, economics are not our biggest concern anymore.  We still laugh a lot.  And cry. And curse. And dream. And sometimes cry again.  We are still broke.  But it's our laughter that has kept us.  For 14 years. 

Last year at this time Wil was getting ready for his second biopsy, this time of lymph nodes in his chest.   My heart was sinking. I cried in his arms thinking what if this is it?  What if year 13 is the last one I get with him?  Today is 14.  Still with no guarantees.  There never were any promises in the first place.  Just a commitment to somehow make it work. And that's what keeps us as well. 

Under the wing of love I have grown so much as a wife, but more importantly as a human being. And this past year, 365 days, countless medical appointments and procedures, over 100 nights without him in our house...this year we have fought. But not against cancer.  We are in excellent hands with his medical team. We follow orders given and try to live and increase wellness as we are able. No, the big fight has not been against cancer. 

Instead, we have fought to hang on to the moments.  Hoped for more of them.  And prayed we were somehow stringing together the pictures of our life, caught in the prisms of our tears, in a meaningful way.  We have grappled to hang on to love and let fear go. We have battled for us. 

I thought I knew love.  I thought I knew him and myself and our marriage. These depths I could have never known before. 

It's funny. We aren't even a perfect match. We are actually opposites in nearly every way and the things we do have in common cause us the greatest strife (we are both oldest children, need I say more?)!  Somehow, though, 14 years ago...and only 11 months after our blind date...we made an impulsive, gut instinct and emotional decision to say "I do" (isn't that what most weddings are?  How many of us had any clue how life would shape up, knew all that much about the other, or really thought much past those romantic early feelings?  We like to think we do, but it's often pretty surface stuff and sometimes if we are lucky and work hard and it turns out).  My dear hubby has turned out to be the person I respect most in this world.  And the one I'd pick every time. Even if it meant the same heartaches and heartbreaks. The same fights and tears. My imperfect, perfect partner. 

There are some things in life, if you knew the outcome you'd avoid. But him...my better half...I'd pick him every time. 

Will there be a year 15?  Like anniversary 13, we have no idea.  The way we know we are growing and thriving is that it doesn't matter as much now. I want at least 60 more with this man. But I am blessed with every second, every up and down, to be on this life journey with him. Blessed to be kept and caught up in a commitment that is more than I ever imagined.  Loved. 

These days I'm finding inspiration and comfort in poetry. Because I cannot say it any more beautifully than poet David Whyte, my dear Wil, who I love fiercely...to the hand that belongs in mine...this one is for you. 

The True Love by David Whyte

There’s a faith in loving fiercely the one who is rightfully yours
especially if you have waited years and especially if part of you never
believed you could deserve this loved and beckoning hand held
out to you this way.

I am thinking of faith now and the testaments of loneliness
and what we feel we are worthy of in this world.
Years ago in the Hebrides I remember an old man
who would walk every morning on the gray stones
to the shore of baying seals, who would press his
hat to his chest in the blustering salt wind and say his
prayer to the turbulent Jesus hidden in the waters.

And I think of the story of the storm and the people
waking and seeing the distant, yet familiar figure,
far across the water calling to them.
And how we are all preparing for that abrupt waking
and that calling and that moment when we have to say yes!
Except it will not come so grandly, so biblically,
but more subtly, and intimately in the face
of the one you know you have to love.
So that when we finally step out of the boat
toward them we find, everything holds us,
and everything confirms our courage.

And if you wanted to drown, you could,
But you don’t, because finally, after all
this struggle and all these years,
you don’t want to anymore.
You’ve simply had enough of drowning
and you want to live, and you want to love.
And you’ll walk across any territory,
and any darkness, however fluid,
and however dangerous to take the one
hand and the one life, you know belongs in yours.

Lean

Jenny here. 

I am sorry to be absent for awhile. If you are a dog enthusiast you know how difficult it can be to lose a little one. I may be overly attached to mine...I guess it's all how you look at it. Regardless, Bella's tragic, and not in my time frame, passing just came at what felt like the worst time. 

I hope people know I am mostly optimistic by nature.  But the stress and ups and downs that is my dear hubby's treatment, keep me dangerously close to the floor most days. I just had no idea that this floor had a basement and I would fall through to it.  

Our sweet Tyson dog was a mess the first few days.  Accidents (which never happen for him), whimpering in his sleep, deep soulful breaths into her blanket.  In some ways he is saving me again from deep despair.  My crying makes him so worried.  And so we play extra long, hug extra tight. He now has a makeshift bed next to ours and is keeping the boundary because he enjoys being close, even if it's not in our bed.  The house is quiet without his sergeant to give bark orders. 

I have now been the crazy lady breaking down in the pet store while buying dog food, strangers gathering around to hug me. I'm now that spectacle in the Sonic parking lot, sharing a corn dog, bite by bite, with my puppy who was left behind. I am the one nearly collapsing from the weight of tears when I come in the door at night and it hits me again that she is gone or I automatically reach for her when waking up.  I am the one trying to figure out how to feel all the feelings: love, grief, betrayal, fear, hope...and actually be ok with them and the time it takes to deal with them.

Bella always knew how to lean into emotions.  Never shy away.  A friend said to me this week, she was a furry social worker.  Truer words I cannot find for her.  My niece said she wasn't just an ordinary dog.  Silly me had somehow thought of her as my back up plan.  It's morbid, but she had a greater statistical chance of living the next five years than Wil. I thought she would be there the next five no matter what happened.  What I carry with me is her spirit:  love without abandon, friendly spunk, ask for what you need, and stay with whatever you feel until it transforms.

UTSW, in all their wonderful ness, once again wrapped their literal arms around us.  I had more prayers and hugs last weekend than I knew what to do with.  The nurses and even the weekend attending oncologist, cried with us and loved us and took care of more than just Wil's physical needs. 

I think Tyson saw her one night.  He visually traced something moving slowly across the room. He didn't bark.  He was at rest but alert. 

This blog is really not just about Bella.  It's really about the deep sorrow that comes from losing a joy.  It is about the journey we now make from the basement back to higher ground.  Life is so short. You don't get over loss, but if the life within you is strong, you manage to move through it somehow.  I don't think this hole gets filled in.  Just like the holes left from the sorrow we've gone through the last six months. You can't be the same as you were before.  You just grow around the places left open. 

Wil is doing well.  Tired.  Counts have recovered well.  He is getting a weekend, 11th day of the cycle, chemo as I write. We have enjoyed a few days with his old roomie from college who was a surprise to him all the way from Wisconsin. One foot in front the other. There are some days, that in and of itself, is truly the miracle.  

Love Sorrow by Mary Oliver

"Love sorrow. She is yours now, and you must
take care of what has been
given. Brush her hair, help her
into her little coat, hold her hand,
especially when crossing a street. For, think,

what if you should lose her? Then you would be
sorrow yourself; her drawn face, her sleeplessness
would be yours. Take care, touch
her forehead that she feel herself not so

utterly alone. And smile, that she does not
altogether forget the world before the lesson.
Have patience in abundance. And do not
ever lie or ever leave her even for a moment

by herself, which is to say, possibly, again,
abandoned. She is strange, mute, difficult,
sometimes unmanageable but, remember, she is a child.
And amazing things can happen. And you may see,

as the two of you go
walking together in the morning light, how
little by little she relaxes; she looks about her;
she begins to grow.”

Bella Monster

It is with the heaviest of hearts I pen this blog. 

Cancer takes away many things. Mostly is takes away choices. Choices that are linked to people you love. Choices linked to finances. Choices linked to outcomes that would have been different if the cancer didn't exist in your life.

Bella, otherwise known as the best birthday gift I ever talked Wil into getting me, was born into this world and into our family in 2003. She saw me finish grad school. She visited with me when my dad was on hospice and had dementia...her name was the only one he clearly remembered at times. She licked my tears when he died. This past year, she spent many sleepless nights with me, pacing our house, sleeping on the couch when I couldn't bear a bed without Wil while he was admitted at UTSW. 

You see, Bella really wasn't just a dog. She was a little girl who didn't mind me holding her like a baby if she got a belly rub. She was a guardian, alerting Tyson (or just stirring up trouble) if she felt things were out of place. She was the original tenacious 4.75lb furry monster with love bigger than her body, the everyone loved her #1 chihuahua. She was sweet to children and adults alike. A ninja licker, a master snuggler, an attitude sky high...she had her own pillow on our bed. She had my heart. 

Today Bella, our feisty fur baby, was in an unexpected altercation and suffered injuries to her eye and unfortunately internally as well. We have emptied our savings account before to save her legs. But with cancer there is no longer savings accounts. The vet, at first, had given us a 50% price break after hearing about Wil. But during surgery the damage was much more severe than expected. The possible complications too high for her age and the price for her life would impact Wil's treatment. 

Wil said we can't do it. Not now. We have to save her. 

We cried in his room at UTSW knowing the upwards of $6000 cost and possible poor outcomes didn't make logical sense.  I have made so many impossible decisions in the last 6 months. But I never expected this one right now. Sure, she was slow on the 3 legs she used (having never agreed to use the one we paid high dollar to reconstruct...that girl ruled her own world). But nothing stopped her. 

I said I can't do it. I can't decide now, not while I might lose Wil. How could I ever survive the loss of him without her. 

We cried knowing we had to decide. Knowing Wil would not get to see her again. 

Many moons ago we may have been able to try and pull funds together.  But cancer takes away so many things. Strips you clean of what you think you can't live without. Leaves you with limited options. 

Bella loved her daddy so much. During thunderstorms she would insist on being in his arms. She was my dog. But he was her protector.  The last set of storms here, this month, almost killed her nerves. She couldn't touch him. But she needed his safety. She cried and whined and panted. I was not good enough. She wanted him. 

The nurse hugged me on my way out of Wil's room. I asked her to sit with him. There was no way to stop the chemo drip and let Wil grieve the loss in person. I drove alone. I held her in my arms. Wil said his sweet goodbyes via phone. I held her until her heart stopped beating. And for just a little bit longer.  I saw the vet sob when she turned away. 

Everything dies. I know this. I will always remember her cute little twitches and wiggles and closed mouth barks as she dreamed about giving everyone a piece of her mind. Her endless kisses. 

Tyson and I are home tonight. The whole drive home he was completely silent. He's never silent. I couldn't bear the thought of grieving without him, but it pains me to leave Wil too.  But Wil said take him home. Mourn. 

Cancer. No options.  

I brought in her bloody kennel. He sniffed the inside. Walked around. Came back. Sniffed some more. 

I sat on the couch and wailed. Just when you think you have been broken open completely, your heart breaks once more. 

Tyson found her bed n the other room. He's been there the last 45 minutes. My high anxiety guy who has to be within eye sight. Stillness. Soft whines. I think he knows she's gone. 

And so begins another long sleepless night here at The Clark's. Wil at UTSW. Me, feeling ever so alone. 

Only tonight, I walk the floors alone, without her. 

The Drive of Intimacy

"Does this even feel like your life?"

It's a short, yet powerful, question we get asked a lot.  I can guess that means, does this journey feel real? Or, has our sense of the twists and hard lefts caught up to our new life reality? Both are probably no and sometimes yes.  Our travel down this road is nothing we could have planned for or gotten ready for in advance, other than the fact we are blessed to have a great marriage that we have made a priority from day one.

At times we feel like "we've got the hang of this now."  Like we know this route.  And then life continues to remind us that each day is distinctly different from the last and will surprise us with many peaks and valleys alike.  A truth for all of us, just made more clear when your vitals are checked throughout the days and weeks, measuring and reminding you that life is mostly uncertain and for all of us will end in death.  Some, statistically, sooner than others.

The past 16 days, since Wil was last admitted and then was back in the ER, have flown by.  Being at home always seems to go faster than the weeks at the hospital, despite the fact that they outnumber the inpatient days three to one if we are lucky.  Usually the days melt away quickly, as we settle into the already well worn indentations of life, our spots on the couch, our sides of the bed, enjoying our typical meals...our flow of life as we know it through the cozy, intimate confines of our home together.  My favorite place.  Even clinic appointments have started to feel like a normal flow of home life.

Side Note:  My side of the bed is never used anymore.  There is a middle and there is his side.  I sleep in only one of those two places now.  There is not enough time in this life to lay on my side in the moments I have him.

This last round of chemotherapy reminded us that the casual knowns, those usual grooves we'd like to not climb out of, can ever be taken for granted.  Each round has its own personality.  Round 2B was significantly different for Wil, in terms of recovery, than the previous rounds.  We are told he is "normal," a word we have longed to hear, yet with those few little letters, we know what that probably means from here on out...it's likely it will continue to get harder. He will not bounce back as quickly.

"But it's going good, right?"

It's going according to the plan...each round destroys more of those cancer cells in his bone marrow.  Which means each round kills more of the good cells in his bone marrow too.  We are on the right track.  His body is a little more depleted each week and we both can tell.  He now needs frequent blood transfusions, several entire days spent at the clinic in between the inpatient chemo weeks, to try to keep his numbers from completely bottoming out and help his body regenerate.  It amazes me, this whole process, of tearing down and building up.  But we are in good company and always reminded, by the numerous long term relationships you acquire by seeing the same faces of providers as well as patients, that this journey is both long and intimate.  A marathon of vulnerability.

If you ask Wil, he will tell you he is great.  He will ask for nothing.  Last week, after a a full clinic day, he turned to me and said, "I'm so glad I have my voice back."  I love that about him.  After an entire 9 hour "work day" of sitting in a chair and having 3 units of blood drip you back to life, his statement wasn't "I'm tired" or  even "This isn't fair."  But I also worry that everyone around thinks things are going along without a hitch.  That things are naively hopeful--that recovery is sure bet.  Our faces are still marred with mud and tears.  I realize people go back to their lives.  And this right now IS our entire life.  Day in an day out, we manage and adapt.

Maybe it's the retrospect of how crazy it was in the first leg for him.  Now he smiles a lot.  He is more social at clinic, surrounded by the people who you know, without a word, just get it in a way others can't.  He is on Facebook posting about math, science, and politics.  Politely arguing and playfully conversing.  I am the one who gets to see the exhaustion, the bone deep painful exhaustion.  He aches from the inside out (which they say is normal as his bone marrow tries to fight).  I see the blood spots on his pillow from gum bleeds when his platelets are almost completely gone.  I see him break a sweat and breathe hard unloading the dishwasher when he is neutropenic.  To know Wil is to know he will rarely complain about the constant pain in his feet, even though you see him struggling.  I sometimes find myself advocating for him at the doctor appointments to make sure there is honesty about the fact that things aren't as easy anymore.  

I find myself feeling on edge, wanting to tell those he loves, who are absent, to wake up.  Life is short.  We cry together over little joys and the little losses along the way.  We miss people.  We grieve dying relationships along with the grief we feel about everything else.  But we have to keep going.

Today his doctor told us his chance of survival is 35% with this protocol.  Add in a bone marrow transplant and it goes up to 55%.  If we can find a match.  There are all sorts of feelings of vulnerability.  In so many ways we are dependent on others for blood, platelets, and now marrow.  it's not a matter of just trusting doctors and meds.  We have to wait and hope for another being to give of themselves.  If he had a family match, now would be the time for a transplant. 35% is not 0%.  But it's enough to leave me breathless.

Cancer has made a path to the greatest intimacy I have ever known with myself, Wil, family, community, and life itself.  I think the greatest challenge of caregiving is that to preserve the peace and stillness for our loved one, we often carry a different heavy load.  When this blog first started I wondered why there were not more blogs from caregivers.  I can find a patient blog around every corner.  As a caregiver, I love getting that perspective.  I often crave the companionship of other caregivers though.  I can't explain it, but I can feel the why of it, why there are not more caregiver blogs.  We are tired and heavy hearted a lot of the time.  I am often scolded by others who say, "just ask."  Here's the thing...please just offer.  Tell us what you are wanting to do, willing to do.  Just decide. We won't turn you away because we still need the support.  But we are too tired to ask.

This blog helps you all stay connected to us.   We are halfway through this middle stage, the second half of this will be harder.  But this blog, does not guarantee WE feel connected.  Don't just read this blog.  Leave a comment.  Love it or hate it.  We both just need your virtual arms around us.  Let him know you are thinking of him.  Tell us you are praying.  As we expose our life, all we really want back is your intimacy too.  Near or far.  No sugar coating.  Acceptance of the fact that this is hard and may have many different outcomes despite the fact we are filled with faith.  You don't need to know what to say.  Say anything at all. 

Travel with us.  Jump in the backseat with us if you dare.  Or if not with us, with whoever in your life is struggling with physical ailments.  Or addiction.  Or mental health.  Whatever the issue.  If nothing else comes from our lives being opened up to all of you in this battle, let it be this:  take the daily opportunities presented to you--be vulnerable enough to be along for the ride in a visible way to those you love.  Yes, people may die.  Wil might die.  You may hurt.  Scratch that.  You WILL hurt.  This is a moving, breathing life ride.  We realize the front seat passengers are quite the pair--HOPE driving, and MORTALITY to his right.  But we have seats galore in the back with us.

This vehicle has no luxury accommodation of avoidance.  It's real, it's raw...it's in the moment.  But to those of us who had no choice but to take a seat, we really enjoy the company of folks who continue to sit next to us, hold our hands, turn up the radio to shout sing, and let the wind flow through your hair as we face this greatest adventure.

Panorama

Usually clinic appointments take several hours, even just for blood work.  Between battling traffic to a morning appointment, then the busy clinic, waiting on test results, then the ride home...5 hours seems to be about the average length we spend.

I get bitter sometimes. Not about the wait time. I heard one nurse tell a waiting patient once that thank goodness they were busy because it means "more people are living longer with blood cancers!"  This week was especially long though.

I'm trying to *be* with all my feelings and experiences these days, in the raw.  I'm so grateful to have a partner in crime who gets that...just today Wil said he would never want me to feel anything other than what I feel.  Gratefulness is a state of being I try to stay close to but...get this...feelings seem to have a mind of their own and come and go as they please.  The more I "try" to be grateful, the more the annoyances of little things come to the front, to demand respect.  And I do respect them as feelings along with the more positive ones.

At clinic, most of the time we are surrounded by retired people. After coming, for sometimes years, to clinic and seeing the same faces, it's social club for many.  A "diner" type of experience with coffee and idle chit chat.  At times I enjoy listening and smile to myself because these people are making the best of this crappy thing called cancer.  I'm not often invited to the conversation. Once the question of "do you have kids?" is answered, there is often a pause, and then they go back to talking about grand kids, fishing, what they did for work before retirement, etc.  

Sometimes I do genuinely smile and enjoy just seeing people living life to the fullest.  It's what Wil and I intend to do as well, each day we have. 

Other times I think, why couldn't that be us?  I get that the cancer stick can hit anyone, at any time. I never feel justified in saying "why us?"  But I do think to myself, as I am engulfed in a sea of gray hair, why now?  Why couldn't the cancer stick, if it was in the universe's stack of cards, bonk us on the head after kids, a house, a more established bank account and career?  When we, our peers, and family would have more time and resources...why now?

After Wil's discharge last Sunday afternoon, from his week of chemo, we found ourselves in the ER, just 5 hours later.  Wil had a fever so he was admitted for observation.  Tests and swabs and pokes and prods. He checked out OK and was released on Monday night. This week has been one of fatigue for him and we figured it was his immune system bottoming out.  Even his bones hurt at times.  And his neuropathy has gotten bad enough his walking was extremely painful (a new med has been added to hopefully help). Then, Friday in clinic, his counts were really low with WBC of .4 and platelets at 12 (normal would be 4-11 for WBC and 150-400 for platelets). Two units of blood and one of platelets were on the menu.  So, Friday ended up being an entire day at clinic and missed work for me.

That morning, in particular, it was the 60+ crowd.  For several hours I quietly listened to "the good old days" of sports, entertainment, education system, kids, and Texas.  I was lucky to have some family company for lunch, a little time away from the infusion station and the walk down memory lane gang, while Wil slept.

Side note:  I know those descriptions sound snarky.  It's how I felt.  Listening to people talk about grandkids pains me. It means they have kids of their own, and that they probably have had a middle adulthood without cancer.  I have a range of feelings!

I came back from lunch and decided to read and forget about the morning. What I didn't bargain for was that the real perspective, the balance, would not come from the book on mindfulness I was reading...instead, it would walk through the door and give another chance glance at life.

"The gray group" had all but left and the room was now more empty. The quiet was refreshing. 

I didn't notice him at first. He came in so noiselessly.  I heard staff asking if anyone had a cell phone charger even before I realized it was related to him, an all of 19 year old, tall, gangly young man who had sat down across from us. A late arrival.  From the sounds of the staff chirping, a very late arrival.  

In hushed, but kind tones, I could hear the nurse tell him they would need to get started soon, that the weekend clinic wouldn't be able to see him if he showed this late.  Soon his doctor, our dark December attending I love, was next to him, hand on his shoulder, eyes filled with concern, her heart firmly secured on her sleeve, reviewing upcoming treatments. 

"It's so important you make it on time. You need two more transfusions this weekend before your bone marrow transplant on Monday.  If you don't show on time they won't see you.  Who will be with you on Monday?"

He paused. Eyes on floor.

"You need someone there on Monday or we can't release you home. Have you talked to your mom?"

Softly, he responded, "yes, but I'm not sure."

His doctor's face, filled with more concern.  "Do you want me to call your mom and talk to her about this so she knows it's really important?"

"Yeah," he said in a low voice, his eyes still locked to the floor.

For the next 2 hours, several nurses, a social worker, and others would come by.  Trying to problem solve future tardiness.  He was relying on friends for rides. His car might be up and running soon if he could find some cash. He didn't know how he was getting home. Or how he was getting to clinic the next two days. Or where he would be for the night.  It made taxi vouchers even a difficult solution.

My heart sank the way it did when I left Wil alone at the nursing home that first night.  My heart literally hurt.  My chest felt tight.  My eyes filled with tears.  A rush of emotions just flooded me. I had to turn my head away to try to recover.  

I texted Wil, trying to be discreet, trying to wrap my head around what just happened.  He hadn't heard most of the conversation.  That one sentence...of compassion from the doctor...absolutely pained me:  "Do you want me to call your mom and talk to her about this so she knows it's really important?"

How do you reconcile a potentially deathly diagnosis, and at that age, without any visible or otherwise support?

He could have been my former client or student.  He could be anyone.  He could be us.  I didn't know his whole story but no one deserves to fight alone. 

For all the "gray hairs" we encounter along the way, for the things I wish were different, all the terrifying realities, the darkness that is carried alongside hope...at that moment I felt so very lucky and blessed. 

How blessed are we?  Very blessed.  Truly, truly blessed.  There I sat, with a hand to hold that holds me back.  Uncertainties?  Sure, in every moment, but not in the one thing that matters most.  We have each other. 

Wil read my texts about the young warrior just a chair away.  With tears in his eyes now, he turned to me and said "when they say cancer changes you, it changes your perspective in everything."  

People touched by cancer have many reactions. Some want to get through it, and get on with life, not be defined by it.  Others seem to make it their life, passionate about giving back to the cancer community by a career change or advocacy. The whole spectrum is absolutely a personal journey.  

I don't know exactly where we will land along that sweeping continuum...when we are not constantly in treatment and back to thinking about other parts of life more...when our life will be a little more our own and not ruled by doctor appointments, labs, biopsies, and hospital stays each week.    

Wil and I just sat there looking at each other, wishing we could offer something more than a validating smile to that young man.  The staff is amazing and caring for him with all they have in them.  There will come a day when we have the energy and resources in more tangible ways then just an understanding nod to fellow travelers.  This I know:  We won't forget life's panoramic view here or the new community of mismatched soul mates we are forever touched by. We will find paths to pass on the love with which we have been blessed.  And we look forward to being that blessing.