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.

Exposed

Jenny here.

First the updates.  Wil is half way through his 2B round of Hyper CVAD treatment (a type of chemo protocol). Bags are being changed, monitors beeping, and he is soundly asleep as I type. In a few weeks, if all continues to move right along this path, we will be half way through the consolidation portion of treatment (4 more inpatient rounds for sure)!  He is in such good spirits. I am in such good spirits. I want to breathe it all in.  I hug him tighter these days. Is that possible?  My *imperfect* love for him is more expansive than I could imagine.  He feels so tall again, upright, better balance, doing laundry and dishes on his good days.  I sometimes come home from work and find more eggs have been purchased or his prescriptions have been picked up. He's independent most of the day and, in most things. I try not to take it for granted.  A day doesn't escape me that I'm not grateful for how far he is come.  We try to not lose sight that not every partnership makes it through a health crisis like this and that a marriage, alongside this cancer journey, still takes work.  We are lucky. We still pray for strength and patience continually.

It's hard being inpatient every 16 days. The time at home goes so incredibly quickly.  With one crappy feeling week and one good week, before you know it, it's time to pack again.  Not to mention the weeks at the hospital are draining with interrupted sleep every hour.  I usually stay most nights.  I'd rather miss sleep than time with him. 

By this point, day number 62 at UTSW (combined total hospital days, from all stays since November), the staff here have seen in me in so many states. Here, at the hospital...at the moments of great heart break, of triumphs, sleepless nights, drooling on my pillow exhaustion, scary hair, random tears at awkward moments, shower optional-ness, sometimes no bra, coming in after 2 a.m. from work, take charge, picture taking fanatic me...here the staff has seen every side of Jenny possible. More, quite frankly, than any of you will ever see!  Sides of me Wil had never seen (and some he will never remember).

Sure, it's hard being here every 16 days, and yet now, we have started to talk about what life will look like without, eventually, being here all the time.  And that feels strange too.  We will miss our little "family." Does that sound like Stockholm Syndrome?  Assimilation to our captors? I know it's their job to care for him.  It's the amount of care, and the caring for me alongside him, that gives us that feeling of home away from actual home.  It is sometimes in the moments of stillness, quiet awareness, that I value them most. I don't know if they have been touched by cancer in their own family, but they certainly seem to understand it. 

I know I have written about it before, but there is some sort of sweet surrender here.  A stripping away of your life beyond this 8th floor, of putting aside the things that don't really matter in the grand scheme of things.  Of letting go, coming undone, finding the essentials. I've been thinking a lot about that feeling here...the professionals who care for us....of being known by, technically, strangers in a deeply personal way.  This is the caring paradigm, I'm just not used to this side of it. 

Do you ever want to share something deeply personal, but fear the outcome if it's said out loud?  Fear the silence that most likely will meet you after sharing profoundly agonizing feelings?  The uncomfortable stares? Here at the hospital, in my varying states of disarray, I cannot hide. You can have any kind of day...the staff have seen it and can read your face.  And they continue to ask if you are OK even as you try to occasionally fake it.

Exposed.

It's the word that keeps coming to mind.  Wil is physically exposed over and over through this process. I find myself emotionally exposed though, as well.  I understand the risks and wonder how putting most of this experience out there, in a public space, in words, could affect my career later?  My relationships?   Will people look at me the same?  Certainly this blog started out as just a communication platform for close friends and family to keep up to date with Wil's treatment.  From his perspective.  I had no idea the the significance it would play in my own personal processing.  

And so life laughs at me, just a little.  And I'm learning to smile back.

I deal daily in other people's vulnerabilities. I am, by trade, a therapist.  I keep my feelings in check, not stored away but moderated, so I can focus on my clients and support them.  I use myself in those therapy encounters.  I love my work. I often say to clients, "we are all on a journey, just a different places," and I  mean it with all of my heart.  I keep boundaries, while also caring with great empathy.  So when it comes to being open myself, to letting my guard down through writing, it feels counter intuitive.

Top Secret: Us therapists are far from perfect.  To continue to better your work practice, you have to be curious and active about our own life practice. We probably spend more time analyzing ourselves than the people we meet outside of work.  I can be my own worst mental enemy!  But I've tried to stay true to my intentions here.  To be open, emotionally bare.  To accept the feelings I would ask my clients to accept in themselves, no matter how terrifying the honesty, at times, can be.  It's all a part of this life thing, right?  The support we have received back has been validating yet, I know, at the center of things I am really just trying to make meaning of events in my own heart.  And it's my own ability to embrace or not embrace my journey that makes all the difference.

I recently found writings from last year.  Angry, brooding.  Dark, gut wrenching. From during the time we were chasing the diagnosis and scared.  Before we had told many people about the what if's and certainly before the blog started.  I had never intended to share it with anyone...not even Wil. It made me nervous.  But last night I read it to him. He is strong enough. He always has been. I'm starting to give him the opportunities to care for me again too.

This is what I know now:  Hiding involves fear, love illuminates.  Directly leaning into and embracing the shadows continues to somehow catch my falls.  I sometimes wonder what will become of this little blog.  I still write it for Wil because I made him that promise. But I'm learning that I've been writing for me too, and in the process of laying down feelings, of my humaness being exposed...the whole gamut of ups and downs...it is has given me freedom to be fully alive and, now, dressed in even greater love.

The following is an excerpt of what I shared with Wil.  A mile marker of once upon a time. Nothing more, nothing less.
-------
Darkness (5/3/13)

"Can you handle my darkness?
I'm not sure where I live anymore.
Somewhere between light and depth.
In slow motion...rewound, fast forward.

"Can you handle the forecast?
The sun most days. Yet followed by shadows.
A despair down pour followed by partly OK.
Oh the crevices of possibilities.
Somewhere between hope...and the fragments I keep glued.

"Can you handle my lack of ability to hold it together for you?
To avoid the egg shells around your comfort?
I'm too tired to care anymore.

"Can I scream its not about you?
I'm lost for the words to convey the abandonment I feel when I think of you.
I'm not sure where I live right now...
But you don't even want a forwarding address to this nightmare.

"Where could my heart reside if it wasn't with his?
If not in this home of everything I've ever needed.
Now, half exposed brick from the pressure cooker.  Home, ignited.
Shadows, broken, carried, draped across my limbs.

"I've been running and running and running and running for a long time.
I wasn't fast enough to escape my worst fears.
Trying. Just trying to not lose more familiar walls to the terror of what is.
Rebuild? Not the question. What materials we are left...Realness."

------
The Jenny who wrote those words in May 2013 was alone and scared, already feeling relationships drifting away.  I could not have known how wonderful and surprising it would be to have unexpected people rise up, fill in the gaps, and to help carry us on. 

Today is different. The revealing of self, the new community that has sprung up while we struggled to find our way...you would think that protecting your life details and feelings LESS during this time would make you more susceptible to heart break.  Yet it's done exactly the opposite. It has opened us. It's been a light to the dark, a light to our path. 

Bluebonnets

Jenny here.

This week we started checking things off our "one day we will ___" list. There are things that will need to wait on a better immune system and time away from the hospital. But the little things...they are just as satisfying and special to complete as that someday trip to Hawaii.

In almost 10 years of living in Texas, my favorite time here is still April.  Suddenly each year, almost over night, the fields turn the most beautiful blue, as the Texas state flower pops to life.  They are short lived little beauties and the spring weather often determines just how bright, how dense, and how long they last. In the bluebonnet weeks in Texas, I am a happy girl. Visually, there is nothing better to me, in the land of hot and red brown earth that comes too soon in summer months.  I know I'm not alone, because the tradition of parading your family out into the blanket of blue flowers to snap a few photos continues every year.

If you aren't from Texas, or maybe even if you are, the Texas folklore of bluebonnets may not be something familiar.  There is a wonderful written version of the tale by Iron Thunderhorse.  I recommend reading that version (http://acqtc.org/Articles/SheWhoIsAlone) because I can't do the same justice to the tale, but let me summarize it here in my own words.

Legend has it, that during a great drought, in what is now Texas, the Comanche people were starving.  Despite being a skilled and thriving tribe, people were dying.  They would dance, pray, and chant for rain to come, asking the Great Spirit to save them.   One day the medicine man had returned from his secluded hill with a message from the Master of Life:  the people had become proud and selfish, careless with the land entrusted to them.  For rain to come, they would need to choose their most prized possessions to sacrifice into the great fire as an offering.

The people were happy for a hopeful word, until they realized what was being asked.  They were not willing to give up their things.  No one would come forward with an offering until, overnight, a small orphaned girl who had lost her parents in the famine, named She-Who-Is-Alone, decided to make the ultimate sacrifice herself.  With boundless love for the collective tribe, she took her blue feathered doll, the one possession left from her parents, to the fire on the hill, and laid it down in the flames as a sacrifice.

She watched it burn.  Watched the fire die out.  Collected the cold ashes of her once doll, the material memories of her family, and cast them out into the wind, spreading them to all corners of the hill.  And then she collapsed and slept.

When the tribe awoke, much to their surprise, a blanket of blue flowers was engulfing the hill.  As blue as the little girl's feathered doll.  And soon the rains began.  The little girl had given of herself, creating a new reality and ensuring survival for her tribe.

Every year I say we need to make time to take bluebonnet photos.  Every year I feel the rush of excitement when I see them spring out of the ground, but I've been working weekends for years, and before I know it, the last of the beauties fade into a memory.  Last April, as we were driving to appointments, chasing a diagnosis that everyone thought was cancer but couldn't pin down, the dark outcomes, the possibility of losing the love of my life would creep in.

I cried, one day driving down the road, knowing another spring of bluebonnets with Wil had come to a close, and that another spring was never guaranteed.  Our dreams and hopes...our survival...assaulted.  So this year, when the opportunity arose for pictures, I sweet talked the hubby into crossing it off our list.

Last night we had a magical moment in a field of blue.  We are always mildly uncomfortable with photos, wishing like most of you that we were this or that weight, had better hair or outfit, etc.  Yesterday though, once on scene, we no longer cared about body composition or if one of us still has hair and eyebrows...instead, our hearts just wanted spring 2014 documented, as it is right now...full of love, sometimes fear, complicated loveliness that is a journey alongside cancer treatment...because we are still here, together.  Some imperect perfection among the most beautiful sign of life that Texas bestows upon us each year.  A little slice of life without thoughts about leukemia, statistics, side effects, meds...just a simple moment of life.

And so I cried all the way to my sister's house after we left the shoot, reading the letter she had left for us with the photographer.  Crying because Wil is still here, with no guarantees, with good days and bad days and everything in between...happy for just this exact moment in time.

I wish I was as selfless as She-Who-Is-Alone.  In my life, I have probably identified more with the adults in the tribe--Not wanting to give away what I think is my right to keep, trying to hold tight, in a time of depletion, to what is known.  Clinging desperately to the life I wanted, instead of giving of myself with no strings attached, and casting the ashes of my former life into the wind. She-Who-Is-Alone had the courage to let go of the pieces of her beloved past so she could become present and loving in her current situation.  Her grit let a new, unknown, and prosperous life rise from the remains.  And so it came to be that the tribe gave her a new name: She-Who-Loved-Her-People.

The Comanche believe that the bluebonnets, born out of the ultimate sacrifice, are here for us as a sign that, despite loss and struggle, rain and survival will surely come.  All it takes is the ability to take judgements about our circumstances and replace them with compassion, both to ourselves and others;  To free ourselves of reactivity to what life asks of us and find a way to relate differently to the facts of our current situation;  To hold to the process, the twists and turns of life, rather than a two dimensional goal.  Those three qualities change us, change our purpose, and open us up for what is next.

For Wil and I, its like the universe aligned for us both this week. It's like we have both walked up the hill now, tired of starving, in the quiet night of our new normal, and gently laid down former expectations, watching them disintegrate before us. Not because we don't love what we have had in our life B.C. And not because we don't still mourn for the little pieces lost. It has been a subtle shift, a realignment.  It's time to take handfuls of black dust and see where the breeze will take them.  The sunrise of our new dawn is still uncharted territory.  But I have a feeling, that just beyond what we can see now, there is an amazing sea of azure petals just waiting for our arrival.  I am anxiously awaiting the April of our life to begin.

Forward

Jenny here.

Last week was a tough week for me emotionally. Physically, each round of chemo seems to wreck havoc on Wil's body faster now. He continues to tolerate it, but his body is more worn down each time, resulting in greater muscle aches, fatigue, loss of appetite, and headaches. It's not constant, but it is daily, and watching it happen is emotionally draining for me. He tries to lay off the Tylenol to spare his liver, so we have been using essential oils to help with minor aches and pains. Some days, it does great. Some days just OK. Just like with food, each day the thing that worked before may not work now or will work later. It's not consistent or predictable. He is keeping down food with just mild nausea and so far his temp has only gotten as high as 99.2 once.

On Monday, we went to clinic for his neulasta shot. His WBC was at 4.0. The cut off for normal.  Today, I'd assume he's hit neutropenia by now. We received the final and official report from the BMA--negative. We are on the right track. Fingers crossed. Barring no emergencies, our next appointment is Sunday for vincristine (chemo) at the outpatient clinic. Not having to be at clinic again until Sunday feels lovely and means 2 more mornings this week we can sleep past 6:30am. A nice little blessing.  There is nothing I adore more than extra quiet moments snuggled up next to him.  In those moments I can close my eyes and nothing feels different.

Have you ever had the experience of silently crying out in desperation and the universe, in a sweep of divine intervention, dropping bread crumb clues to lead you to safety?  To the best of my own introspection work, I think I hit a point of resentment last week.  Not for Wil or for being with him through this journey. Not a place of thinking we are above going through something like this...this life provides us all with opportunities to grow. More so, a point of angry boredom coupled with profound grief. An unsettled place of struggling acceptance.

I had just said to Wil recently, "I'm so bored with cancer." Bored of talking about it. Tired of the unknowns...Our whole life seems to revolve around a steady stream of meds, countless visits to UTSW, mountains of paperwork, vital checks at home throughout each day...you get the idea. Even when I take a break with friends or family it's often met with discussing treatment. I fall easily in to it because 1. I sometimes really need a place to talk about it (and so do others) and 2. Most of my waking hours involve caregiving or planning around caregiving/treatments.

So my growing resentment, instead, involved the fact that we had fun plans. Good plans. To be helpful people.  To be financially stable and in careers and having a family. All wonderful, simple things most people want.

We had a dream for our life together that we had built over 13 years of marriage.

For the past year we have felt held captive to a fate we don't even recognize, forced to grieve a life we never even attained. You know, in all logic, that a health issue can pop up at any time for any of us. Something terrifying can be just around the corner. Life, much of it, from the day we are born, involves pain.  We come into this world through pain and often leave in pain. In between, in the middle.  Guess what...pain is inevitable.

I know this, yet this is not how I envisioned my 30's. We have been holding it together, but trying to work through this has made me weary and resentful at times.  I had been brooding over this in my head for a few days...the pain, the resentment, and trying to muscle through both. I like to "do" and get things done (and so I am often given situations in which I just need to "be").

Then, Tuesday night, I was on a teleconference for caregivers with a life coach, Tambre Leighn.  I had heard the info being given before...professionally, I've given similar advice, many times over, to clients.  Sitting there, though, in my dimly lit office with hot tea, I quietly listened to others say the same word I've been wrestling with...resentment.  I stayed on mute, not saying a word, and just cried. Maybe I'm not so crazy. Maybe I'm I'm experiencing exactly what I need to at this time. I just feel this uncomfortable stirring at my core these days. I'm unsettled. And even if it is good for me I don't like it, quite honestly!

Part way through, Tambre told about her own journey with her husband. I really don't remember much of it, to tell you the truth. My mind was wandering, still mulling over the past 48 hours of little messages, from multiple sources, that had been strung together, as if to tell me, "it's ok to make plans, to keep moving forward, to not put life on hold for cancer."

So what I heard, wrote down, and mediated on the rest of the night were two words:  Moving Forward.

My new favorite quote for awhile has been: "The price of our vitality is the sum of all our fears."  David Whyte

I had gotten caught in fear.  I've been maintaining, holding steady. But not moving much. Fear can be a powerful spring board if used to push us toward new growth. It can also keep us just surviving.

Instead of holding to "this is not the right time to ___," should I embrace the possibility that right now, in the middle of all that is going on, may in fact be THE IDEAL time to take positive risks?  A time to get better at taking care of me? To dream even bigger?  To expand my life, my business, harness creativity, pursue new interests, strengthen relationships, redefine myself?  Is that even a "responsible" choice considering all the unknowns?

People say, cancer doesn't define you. They want to wipe our tears and take away the agony. I love them for that, I feel the warmth and care in that intention.

But the pain, the struggle...it does change us.  It's supposed to change us. It should redefine us in the way of a personal awakening in the midst of the drama.  Maybe that's the secret to making it through no matter what the outcome? And that opening ourselves to a passionate new path is what will really save us in the end.  There is no path around this if we want vitality.

What do I have to lose?  There are many years of ahead.  Life is now, and forever, coupled with the added element of cancer.  At the end of the day, all we need, is the surround of loved ones who will hold our hands as we go through the pain...for the courage to endure the discomforts and struggle...to not avoid pain and live smaller than this situation has offered.

So this week, I've started to take risks and envision a future that can stand on its own, with or without cancer.  I'm already a different person now with developing needs/interests.  I have a career and hubby I love. But our lives suddenly feel so different and my inner compass is no longer pointing in the same direction, knowing this diagnosis is bigger than us and that maybe, just maybe, it will mean something more than we had planned all along.

The threat of cancer no longer exists because we are already living in its daily presence. And it makes other risks, suddenly, seem so very small.

Reality Fights

Jenny here. Gosh, I apologize for it being over a week without a significant update. We have both been posting on our Facebook community page with small updates. So,we hope you've been able to check out little happenings on there.

Wil is currently in the hospital, having been admitted for his chemo on Wednesday. As I sit here waiting on rounds, he is more than halfway done with round 2A and hopefully will discharge on Sunday or Monday, depending on counts.

What is better than that?  This:  Wil is...back. Positive, thoughtful, involved Wil is here now, asking questions, taking charge of his own treatment, learning to give himself insulin during his steroid induced high glucose days, inquiring about his cancer, alert, thinking about school. On Wednesday night, after he admitted, both nurses and I noticed his blood pressure was pretty good (compared to previous admits where it was sky high and he was anxious) and he seemed...calm. Quietly ok (that's equivalent to my dramatic super happy for my shy, sweet, naturally overly serious guy).

I mentioned it to him. "You seem different today."

In his Wil way, slow to speak, quiet, matter of fact confidence, he said, "I think I'm accepting this now."   Just like that, overnight, his mood and outlook has changed.

And then there's me. His polar opposite. Normally louder, less serious, pushy, fast paced, easily distracted. This is the moment I've been praying for for him. I don't how you fully accept a disease you intend to eradicate as quickly as possible. But that moment of surrender to what this moment is and is not...for the cloud to lift. I've been hoping for that. So I could take a rest and not have to carry the positivity load.

You can't push a mountain, and in my 14 years of loving Wil, I've long learned to give him space. Wil needs time and there is no rush. He won't have it and it won't create motion more quickly if you do. He has taught me so much about stillness. (I'm a better therapist and person because of him).

Sometimes our innate differences means I forge ahead on issues in our life looking more OK and optimistic than my partner in crime. I guess the cat is out of the bag now on that one because of this blog!!  I am so thankful, though, that in a good companionship like ours, we can take turns at emotional states, because while Wil has had a transformational week in his journey, full of acceptance, hope, and promise, I've been fighting with reality...a lot.   Feeling heavy hearted amidst all the hope I still hold onto.

I move in and out of despair and cheer, from sorrow to trust in what will come. The reality is, he can beat this. The reality is, he might not. Oh reality, you complicated, fickle thing.

Here's a Readers Digest condensed version of my week:

Last Friday I was flying high from his clinic appointment. His counts were good.  So good we could think about going out in a public place (gasp) with some precautions (mask, avoid crowds, take your own snacks, etc).

Saturday I felt the courage to look more into finding other people online with ALL (with no real luck).  Of course when he was first diagnosed I was all over the internet looking up facts and info about ALL.  Through the storm I had no time for any more research. And Wil has been an outlier so most of it was not very true to our story at the time anyway.  I felt empowered last Saturday so I got back online. I was left in awe that in 2013 Wil was one of approximately 2070 adults diagnosed with ALL in the U.S.  It's funny how that medical info makes more sense now because we are surrounded by it daily now. But, 2070 people out of the 315 million people in our country?  His nurse said she knows of just a few treated last year at UTSW (AML is the more common one...also the one ALL can turn into, if cancer comes back).  40% of adults beat it. That means over half don't. What?  I hate that. But Wil is my outlier. I pray he continues to not be the norm. Because the 6 out of 10...well, I'm not prepared to wrap my heart up in that reality. Yet there is no denying that we are just two people. He is one of 2070. With blood cancer you are chasing a moving object. It's out of sight but the journey continues. Most people reach remission. It's holding on to it...8 years to feel like you beat the odds....praying he won't be one of the 1000 plus adults that also lose the battle each year, that is what is absolutely daunting to think about.

Side-note: I read somewhere that about 750 people a year are struck by lightning. His odds of ALL?  Not too different.  Full of wonder. Full of questions. Yet feeling like maybe our life together is meant for more than what we could have planned...That this lightning strike might mean something bigger for us in this little ol' life.

Sunday we took my sisters kids to see a movie. Their faces light up around their "Unkie."  All of Wil's germ worries seem to melt and he looked so happy to do something normal. I felt so happy to do something normal. But snuggling there with the kids I had tears streaming down my face. I'm so sad these days that another generation of "Crouch" kids are living through the painful reality of illness. It never escapes me that I was my nieces age when my dad was first really sick. I know I'm over personalizing here. But I remember what that looked like to see my dad sick and in the hospital. I remember what it felt like. I wish I could bubble wrap them up and protect them from having to know this reality at such an early age...that people they love are not spared from heartache. That life can be scary. Guilty for dragging them along this rocky road. But grateful they are here all the same.

Monday Wil had a BMA (bone marrow aspiration or biopsy). Literally, there is a long hollow drill bit that they use to drill into his hip bone to get fluid and tissue to biopsy. Under just some numbing agents, Wil laid on his stomach while I watched them use an orange drill, similar to something I'd use at home to hang curtain rods, to drill in 6 inches.  Flesh, numb. Bone, however, has no way of being numbed. I sat there amazed, listening to the whirring and seeing him hit the bed repeatedly to help push through.  I find medical stuff interesting (I'm the person who ASKS to watch my own wisdom tooth extraction in college), yet I tensed and was sick to my stomach, knowing this would be one of many BMA's in the next 8 years, hating to see him have to endure it.

Tuesday I was deleting old voicemails while lying in bed with Wil, binge watching Mad Men. I played an early January voicemail from him. The only words that we're understandable were "I need help."  The rest, you could hear the pain, but you not make out. With a teary look Wil asked what it was he was hearing. At the time he was so frustrated that we couldn't understand him.  He had no idea how he had sounded. Or how hard it was to get 20 of those a day and not be able to do anything about it.  "Why do you keep those?" he asked. Artifacts...from a time I won't forget. Milestones for how amazing he is doing now. Things could be worse. They already were not too long ago. Pain and happy all at once.

Wednesday night, talking with a dear friend who stopped by the hospital, the realities of hoping for a family of our own really hit me. When you have such a long journey ahead, when do make a responsible decision about even trying for that?  And even adoption. You have to be years down the road and have proven health to be considered. It all seems so...unattainable if I really think about logistics and our age. 8 years. 3 for treatment. 5 more holding your breath that nothing else pops up. ALL, you insidious bastard, likes to play hide and go seek as well as morph into new blood cancers.  What are your plans for the next 8 years?  Still tough to wrap our heads around.

Daily fights with various realities. That's been my week. Can you feel the twists and turns, the curious emotional layers, of this roller-coaster?


**Disclaimer and alert:  I am going to use a certain word with caution in the next paragraph. Wil and I even talked about not using it at all.  We ask everyone to be silently thankful and respectful of where we are at in our process...because this is a complicated word and carries with it some powerful feelings. Please continue to send your love and optimism, but take a moment to think about how this word is multidimensional...a complicated duality we feel from this one little word. A word that is good, yes. But a word, a place in treatment that isn't necessarily static.  A word that in Wil's diagnosis and treatment is the first step toward vitality, not a last step. I guess what we are trying to ask is for folks to reframe from rolling out the red carpets and popping the champaign. But rather, to have a quiet thankfulness for just this moment. Free from expectations and goals.

So the big news of the week is that the preliminary results of the BMA fluid they took on Monday is that there is no detectable cancer now. "Remission."

I share this with hope and with gratitude to his treatment team.  The Jenny B.C. would have heard the "R" word and celebrated in a loud way.  "Congrats". "You did it."  "It's a miracle." Sighs of relief. It's different living through it.

The reality is with any cancer, but especially blood cancers, remission can come more easily than an all out "win."  The doctors say "there is no cancer detected now. But we know it's still there. So now we keep going in this direction."  They are not being negative, and I hope everyone can understand we aren't either. We have reached the end of mile marker 3 of a marathon run.  No noise makers and hats. Just...calm focus.

Early on, at the starting gunshot, we needed the cheers. We have needed love and received it and are still standing!!  We are off to a good start. We will accept as many "amens" as we can get!!  We will continue to need you even more in all the years to follow as we learn to live with cancer. As we pass this first segment of treatment (hopefully by fall), as we transition to the next one in year two, and then the year after that, and then to starting a new post-treatment life in 3 years from now with periodic checks and, hopefully, into that post 5 year sigh of relief.  Because that IS our reality. 8 years, at least, until we can say we beat the odds.  We are still in it, in the mental/emotional/physical battle portion. We are ok. We will need you even more toward mile 20.

I don't know if you remember that blog back when Wil first came home from the SNF. When he told me his new life basically would always include cancer. Remission doesn't mean your body returns to a state of B.C.  It certainly doesn't mean you ever emotionally come back to where you started out. Matter of fact. People find it sad. He's so smart. I only feel inspiration when I hear his words.

We will work to not live in fear, but the reality is that cancer is just part of our forever story now. Like it or not.  The miracle is in the middle, not the end. Wil is determined now. We focus on moments these days rather than long range goals when possible. There is no time to party it up, the fight has just begun. But yet not without profound enjoyment in little things. I used to see Wil less hours in a week than I do in some 24 hour periods now!  At the core of it, I now have all I ever really wanted.

Anything can happen. Anything. We haven't been promised an easy ride in this life. Just that we are not alone. Any of the possible realities is no match for the company you keep on the trip.

So here's where we are at and what we celebrate without asterisks:  He's tolerating the chemo.  It seems to be working. We are blessed. The love in our life seems to multiply faster than our hearts can keep up. And why we ask you all to live with us in these singular moments, to be with us in the stillness.  To be with us in all the forms that reality can take.

We fight reality a lot. We fight the tears. I internally try to prepare to be OK for whatever outcome whilst enjoying the ride, laughing, increasing my heart space for it all...continuing to fiercely love the only person I can't imagine a life without. I fight the darkness. I fight the urge to just be blindly optimistic because I know...I know in my soul that embracing all of what comes IS what this is all about, even if it doesn't fit the reality I *want* for our life.  Fighting to embrace new realities, learning to let go of old ones. And that is ok.

[ready for you all to insert a sea of Amens]

For reasons yet unseen, this is not for nothing. Much love my friends.