Hibernation

Jenny here. I can't believe it is Wednesday already.  I know some have been asking for an update. I feel like we just got home and just laid down for a rest a few hours ago...and then I realize today I have no idea what date it is now. I can only describe our week as quiet as Wil struggles with chemo induced torpidity.  

The good news:  He is holding up well.  There are dry heaves at meal time, feet/hand numbness and tingling, metallic taste to food, and overall "weirdness" (as Wil describes it), but he is still sleeping and eating well.  And his anxiety has subsided.  It's good to be home, even if being home are the parts of each round where he will feel the worst.

Monday we had his follow up at the clinic. His levels are all still good and that liver is holding up. His WBC (white blood count) is starting to dip, as expected, and will continue to do so, but he has not hit bottom. Generally 7-10 days after chemo starts is when you start to see more side effects and lower counts. We are at day 8.  But we all know Wil is unique so time will tell. His BP was very low Monday and he was dizzy and tired.  It took about 8 attempts to get a reading. A bag of saline and med adjustment seemed to do the trick. Friday we will go back to the clinic and he will have another round of outpatient Vincristine (chemo).  This is the drug that is responsible for the hand/feet issues. 

Biology:  Our lizard brains, full of instinct, try to help us react to changes so we can adjust and survive. Lately, we try to make sense of how something that causes harm and sickness is also a cure. We are driven toward safe and pleasant feelings and experiences by instinct. We try to adapt. It's what makes cancer treatment so...counter intuitive. We have physical, emotional, and mental pain throughout this journey toward vitality. 

We try to focus on the fact that chemo is the blessing right now. That healing comes in all shapes and sizes. That we don't know the big picture here.  Beyond my primal instincts, I have to come to terms with all the things I can't change about this...that I dare not put Wil's healing journey, and with it our life journey, in a box of what I want it to be. Isn't that one of the lessons here?  It's why we pray for strength and tenacity.  We just don't know all the possibilities that can come from this situation. 

So sometimes, we animals, in a new stage of life beyond our control, adapt through inactivity, through hibernation, by allowing time to acclimate us to a new terrain.  It's a stroke of biological genius if you ask me. And this week, hibernation, that's what we both have been doing.  We are almost done with Dexter. I'm cooking up Wil's favorites, and we are sleeping in, no alarm clock setting on days with no appointments. I'm still working in the evenings, but mornings are sweet silver linings of quiet, pancakes, naps, and TV.  I'm so blessed to have this time with Wil. Even when I can't sleep and he is exhausted, he says "don't leave me" and I take my iPad to the bed so we can just be near each other. He is ok on his own. So am I. But we want to be close. All. The. Time. How many people married for near 14 years can say that?  It's good for mind, body, and soul.   

I just love this guy. 

For those of you wondering, the pets are attempting to acclimate too. Monday also brought about another loss of normal as the pets came back from my sister's house. They were excited to see us, only to be confronted with their own loss:  of freedom and comfort and togetherness. The only way to keep them and keep Wil safe includes gates, new sleeping arrangements, and no direct contact with Wil. In what can only seem like a movie clip, pet loving Wil has to remind them to go away.  They have to be contained when I'm not home. And no more sleeping in our bedroom. The first few nights have gone as expected. Crying, whining, sadness. They look defeated and there is no way to explain to them this for the best and won't be forever. Both had diarrhea the first day from all the stress. Cancer changes everything, friends...but impossible to explain to these little faces. 

Bak skyene er himmelen alltid blå

Jenny here. It's been a busy few days. I spent all but one night this week at the hospital, so as you can imagine, I'm not exactly well rested but I'm getting better at living out of a suitcase and sleeping through vitals checks.  But there is no place like home. The bonus is that my job is only 15 minutes from the hospital so it's convenient. Add in a couple quick showers at my sisters and it was a week of fewer road hours than I've had in a long time.

Thursday I took 2 hours and shopped for "doggy proofing" items and dropped off the supplies at home (Wil can't really have contact with the animals, so for now there will be gated off areas to keep everyone apart. This is not going to be easy for anyone!).  Driving back I had my sunroof open, enjoying the light and warm air. I thought about all the dark cold nights I drove back and forth to UTSW in December. Heavy hearted. Crying most of the way home. Now, there is light. In more ways than just the sunshine. All week staff commented about the "night and day" difference they see in Wil. He is so much stronger now. We really are in "day" now! And we know it in such an intimate way because of the night we crawled through.

The last 90 days have expanded my heart space for sure. Welcoming in the entire onslaught of emotions, even the darkness, has made this little slice of light that much more remarkable.

It made me think of my favorite, beloved Norwegian saying:
Bak skyene er himmelen alltid blå
(Behind the clouds the sky is always blue).

I've held on to the belief that day is just around the way, that dawn will come and the clouds will part. It sure is nice to experience the sun and blue sky when it arrives. I'm not sure which direction our story will  take next so I'm trying to just soak in the rays.

Wil made it through his first round of cocktail A of the new chemo protocol (Hyper-CVAD), which included about 21 clock hours of chemo over 4 days, all done through his central line except one spinal tap chemo. He was discharged today at 5:00pm and now, close to midnight, after 3 episodes of Dexter and spaghetti, he is fast asleep.

Physical wise, his body is holding up. That liver is still looking good!  He came home with 10 meds (whew copays!) varying from anitfungal, antibiotic, anti- nausea, liver support, etc. Even with the meds for the side effects, he has started having dry heaves at meal times. Food is tasting funny again and he is tired. But overall he is doing well and still getting stronger. The docs even gave the green light to outpatient PT, so we may be able to return to his last PT to continue, with mask and gloves of course.

The staff noted a flat affect today, their only concern, of which I'm well aware. He has been very anxious again the last 2 days about leaving the hospital but, instead of panic attacks, he shuts down. My guy, the one and only person I know who would like to be admitted for 6 months. The hospital is such a controlled environment for him. So the thought of coming home, and being outside with germs, around more people, pets, etc, had him worried. One nurse tried to remind him a hospital is a much worse place to be in terms of germs. Today, thankfully, he seems to be working through it. He wants to be home. But he's been scared to be sick at home. And we both know it's just a matter of time until the major side effects hit (probably betweenTuesday to Friday of next week). I think once we get through an initial round and it *fingers crossed* goes well he will have more peace.

Monday we will return to the outpatient clinic for follow up. Once his immune system bottoms out and rebuilds he will be readmitted to start round one cocktail B (about 16 days from now). Life, for the time being, will be in 3 week stretches. I'm feeling awe struck that we are even at this place because back in December there were uncertainties if he could tolerate chemo at all. While I know we will keep at the fight no matter what treatment looks like, the thought of no chemo would be crushing. Chemo with all it's toxins and side effects is a risk I'm grateful he can take.

Much love...Bak skyene er himmelen alltid blå.

Chrysalis

Jenny here.  Wil is half way through his second cocktail.  The first one last night went well.  During our 5 days here he will have a total of 9 cocktails, 8 through his central line and one through a spinal tap tomorrow.  About 21 hours of chemo total.  If all goes as planned, he will discharge on Saturday.  In about a week from now the side effects will hit him harder.  So far he is tired, but not exhausted.  He is eating and sleeping well, in good spirits, and still doing PT/OT and ADL’s. 

I spent the night last night.  It’s not restful sleep, but while we are here, I feel at ease…that in and of itself is respite.   I am able to have a “quiet” space to think or, gasp, NOT think!  Yes, there are machines, pressurized rooms, staff coming and going, masks, gloves, assessments galore.  It’s “quiet” though, in that there is not much else I can worry about because life slows down and we focus our energy to the treatment at hand.  And we shift focus to just being together, no distractions. 

Last night we watched the Olympics for the first time of 2014.  We laughed.  We sat together and had dinner.  The irony is that, sometimes, it feels more like our old life here than it does at home.  I am not sure if that is because we have made some adjustments to a new normal or because I am less a caregiver while he is inpatient, leaving me freedom to be more of his wife.  And because the staff always makes sure I am getting anything I need too.

I drifted off to sleep thinking about this “cocoon” we have here and how safe it feels.  I am no scientist, so if you are reading this and you are, note my disclaimer that my understanding of these concepts is at about a 3^rd grade level!  I do, however, remember learning about the transformation of a caterpillar into a butterfly.  I knew it was called something other than a cocoon, so this morning I googled it.  (By the way, what did we ever do without the internet?).  There it was with one click, the word I was looking for, with a definition and a few articles that looked interesting. 

Chrysalis=the transformation stage, when a caterpillar’s tissues break down to allow for new parts to be formed and, ultimately, emerge a butterfly. 

What I didn’t realize is that the caterpillar releases enzymes that literally melt the bug into a glob of goo.  In research at Georgetown University, however, they came to believe that certain neurons are preserved and become part of the new body parts of the butterfly.  It’s not that the slate was wiped clean, but a new creature was made out of the remnants.

I have butterfly pictures in my office.  I have always loved what they symbolize:  Change.  Transformation.  I was blown away to know that chemically created goo comes together to create wings, antennae, a body.  A larger, yet more agile and sophisticated, being emerges.

It’s hard to see chemicals pumped through my sweet hubby’s body, to see nurses suit up as precaution because the drugs are toxic…knowing those are the same ones we are hoping will kill the cancer.  Knowing that these cocktails will take his immune system down to nothing...to proverbial goo. 

As I sit here and gaze at Wil over my laptop, while he’s all wrapped up in a cocoon of blankets, bags hanging over head, liquids dripping, machines beeping…as cheesy as it sounds, I feel it.  We are in Chrysalis.  A better “C” word than chemo or cancer.  Just waiting for wings to form out of the meltdown we have felt.  It will take time, which can be frustrating and sad, scary and agonizing, but we can’t go back to being a caterpillar either.  That part of him, of me, of us…goo.   So for now we try to keep the faith that a transformation is in the works.  That this process has meaning beyond what we can see from the day to day hurdles.  And that sometime soon, we too, will emerge into a new life that is even more beautiful. Although more beauty than we have already had, is hard to imagine.

Lucky 18

Jenny here. Today is the day. Wil admitted at 1:30pm and Chapter Two of chemo begins.  So far all the preliminary tests have gone great and on time...so his cocktail of kick ass will be ready for him tonight right around 11:00pm.

I probably sound crazy to the folks up here on 8th floor when I excitedly said "it's good to be back!"  I don't wish anyone to be here, but let's face it, this is where we are blessed to be and need to be. After the horrors of the liver injury and almost a month at that wretched SNF, if we have to be anywhere, here is a good place to be...no, it's a miracle to be here, a miracle that his cancer stayed at a controlled level while his body healed.

I feel like I've had therapy every minute this afternoon. Routine questions about how things have been turn into stories about the last 2 months. To speak them out loud is like a burden being lifted.  They all fell in love with Wil when he first admitted in November, watched the decline, the sickness, wished him well as we left to the SNF.  Now they are all in awe as to how far he's come and that "the old Wil is back."  It's also a strange thing for Wil to hear the stories because so much of that time is foggy.  He said "it feels like someone else's story."

Even for me it's tough to believe. I muddled through so much of the last months just hoping I was adequate.  Gosh, 4 weeks ago I was thrown, headlong, into real caregiving. Sure, I had been there all along the way at the hospital and SNF, even helping him with any ADL's I could. Once we got home, it was just us. What I can only describe as bodily fluid scenes from Dexter, I went from (literally) throwing up on my slippers the first time he had incontinence, to the two of us finding a decent groove to his home care and being thankful I had the opportunity to be the one there.  Today, we were in the car and I kept asking things like "did you brush your teeth?" and had to apologize. It's not that I'm micromanaging, I'm just still adapting to the fact he can do it all himself again.

In truth, we picked the 18th for Wil to be readmitted because I, his wife, wanted one more regular weekend with him. We had the option to start chemo last week but I wanted to finish out work on Saturday and have 2 days with him before any changes (I'm kind of laughing out loud typing that. We are in the midst of constant changes, but each segment starts to feel routine, and having him at home created a new nest of "normal" for us).  So the 18th felt right to both of us and I believe that, despite all our "free will," we are drawn to choices that are far beyond our reach of influence for a reason.  Today is the day we get on with the business of preserving Wil's life.

When I announced the 18th as Chapter Two Chemo on Facebook, a dear, now virtual friend, told me we had "picked" a lucky day.  In Judaism, the number 18 "is the value of the Hebrew letters chet and yod, which together spell the word chai, life.  For this reason, 18 is considered the luckiest number.  God is mentioned 18 times in both Psalm 29 and the Song of the Sea (Exodus 15:1-21), giving these verses special protective power." (Thank you http://www.myjewishlearning.com).

That simple thought has stuck with me all day today. We ARE lucky. We continue to find protection, often in the most important emotional sense, in each other and our circle of warriors.  No lie, we are battling fear, anxiety, crossing every finger, and sending up prayers.  Today is a reminder that Wil has cancer...that we are all mortal.

But today, the 18th, the second chapter, the night chemo begins...is not defined by those facts.  Today is a day of LIFE and the promise and hope of a long one at that!  We have been to the depths and are on our way back up the mountain. Let the journey continue.

Abandon Shoes

Jenny here. It's the last day of Chapter One of treatment, which ended up being 2 weeks of chemo treatment and almost 3 months recovery.  We've had a few beautiful days of snuggles, a movie at a theater, and enjoying some restaurant favorite food before the immunosuppressed diet. We've had the house to ourselves and, as much as I should sleep, I can't take my eyes off him...I'm filled with wonder about what Chapter Two will bring. We are constantly with love. Surrounded by it.

Chapter One, filled with each step ending in an adverse reaction, a wonderful team, yet puzzling path.

Chapter One, brought out the best and worst in the people around us.  We rely on the best and try to understand the worst.

Chapter One, brought out the storm and the calm inside of us, swirls of both at once, and yet here we stand. Here...we still stand. Ready as we can be to take on the next leg.

My own words don't seem adequate today. Poet David Whyte's words, soothe my soul. I hope you enjoy it as well, along with a photo summary of Chapter One.

FINISTERRE

The road in the end taking the path the sun had taken,

into the western sea, and the moon rising behind you

as you stood where ground turned to ocean: no way

to your future now but the way your shadow could take,

walking before you across water, going where shadows go,

no way to make sense of a world that wouldn't let you pass

except to call an end to the way you had come,

to take out each frayed letter you brought

and light their illumined corners, and to read

them as they drifted through the western light;

to empty your bags; to sort this and to leave that;

to promise what you needed to promise all along,

and to abandon the shoes that had brought you here

right at the water's edge, not because you had given up

but because now, you would find a different way to tread,

and because, through it all, part of you could still walk on,

no matter how, over the waves.

- David Whyte

Exhale

Jenny here. Just a quick post-appointment update.

If you've spent any amount of time with Wil, you know he is a big, quiet, teddy bear of a person. He has a deep, smooth voice that you will rarely hear roar, and his spirit is so genuine and strong.  But his eyes. They have always spoken so much more than he verbalized. They are connected to the core of his being.

He was looking through some photos of the past month and said "my eyes look crazy."  It's true. There has been a pained, static intensity in his eyes for weeks. But just looking at him lately...I can see the subtleties in his eyes reappearing.

Wil had a great visit at the doctor today. He strolled in there, sans wheelchair.  It was a tiring morning, but he did it!  At his first outpatient clinic visit on January 3, 2014, he had to be wheeled in, his O2 dropped scary low after sitting just 30 minutes, he needed oxygen and had to lay down.  He couldn't speak much. Today, he sat there waiting, sat and talked to the nurse, then to his doctor. He asked intelligent questions and talked about his feelings.  He didn't shake from anxiety. He said "I'm scared" but talked it through. He's tired of me saying it, but I'm amazed by him every day. Happiness.

The results:  ALL levels are normal!  Bilirubin is at .8 (the aim was for under 1).  His oncologist said "are you ready to do this?"  Wil, with what looked like tears and fear in those expressive eyes said, "no, but let's get started as soon as possible."  Tenacity.

We were able to learn more about his protocol. I will detail it as he actually begins treatment, but it looks less scary to us now.  It's still intense, but knowledge is power, right? If it goes well, in a year he could *fingers crossed* possibly return to school part time while finishing chemo another 2 years.  This first 6-12 months will be inpatient during the actual treatment days followed by 2 weeks at home to recover, but as time moves on the treatments will space out to monthly.  Hope.

She would have admitted him today if he agreed, but we chose 2/18/2014 to begin Chapter 2 of this journey. We want to see some friends, have a movie date, eat some fast food, and lay in bed snuggling with the puppies over the next few days...Things we will put on hold for awhile in a few short days. Tuesday we will be as ready as we can, with bags packed, and wait for the call that they are ready to admit him.  Exhale.

I probably won't blog until next week as I will be enjoying a little slice of the heaven here with him. But expect pictures on FB and Twitter :)

Intent

Jenny here. In less than 8 hours we will have news from Wil's oncologist about restarting chemo.

When I got home from work tonight at 2am, Wil came out and we sat and talked about today, February 13, 2014.  Another date we might not forget. Gosh, here we have been, looking forward and toward this moment...getting back to the fight...and now we are both in knots!  He said "this scares the hell out of me but we are going to do this."  It was a conversation like we would have had B.C.  Wil went back to bed, telling me I should do that same. I'm bad about blogging post-appointment, so I told him I had a few things on my mind to write.

Today is a big kind of small step in our story. So here I am...thinking.  Similar thoughts he is having too. The only difference is he can sleep.

What will it be like?  Will he tolerate this new chemo cocktail?  Will he lose any function again?  And the big one...will it cure him?  That's our top goal, right?  It's what everyone is hoping for, praying for, sending us love about. When Wil titled this blog "fight the big fight" he meant cancer and the goal was to win the battle.  Lately, something has changed in him (and I guess me too).  He said tonight, "I don't like the word cure. Cancer goes into remission. But it's always with you and can technically come back anytime.  But I won't give up."  It would have been a sad statement if it wasn't for the loving wisdom and intent behind it. A sort of peace. I keep comparing life to B.C.  That is a memory.  Wil is absolutely right in his dose of reality. It wasn't a sad moment. It was just...real.  He had been so anxious in weeks prior. Now, "scared as hell" Wil seems resolute. Confident.

Today at PT Wil was up to 5lb weights on his arms...but what's more awesome is that he walked into therapy without his walker. Almost strolled in!  During reps he pushed himself further than he ever has...he had that weight training "stank face" of a warrior. There is not a depressed person inside of him right now. He's determined. I could see the intention in his eyes and I noticed how his eyes are beginning to soften and give expressions I, at times, felt I had lost forever.

I'm doing my own "weights" by getting serious about minimizing risks, learning about the immunosuppressed diet and how to cook. I feel like people must think I'm being dramatic when I merely quote what the medical staff have told me:  a 3 year span of limiting fresh fruits and veggies (cook it until every possible contaminate dies), no eating out is better, staying out of congested public places, washing the dogs paws every time they come in from outside and no licking (poor sweet chihuahua Bella will never be ok with that), and basically limiting anything alive that has dirt or has touched dirt.  Not to mention getting tough on people around us to help keep themselves healthy too and not spread germs. Wil says these are the things that scare him the most. Everyday living can start to look like one big risk. Sit with that for a minute and your head will spin...3 years seems hard to conceive. But those are details we will learn to navigate like everything else that's had to change.

Tonight was the first time we had talked about death since the diagnosis. It's been weeks, maybe months, since we thought about the question of cure. And the possibilities on either side of that coin. Wil said he thinks about death all the time now. It was a calm, matter-of-fact statement.

"Curable intent."  Those 2 little words get spoken, thrown about, throughout any conversation about his cancer treatment. I know we will hear them again at his appointment in a few hours.

That day he was diagnosed, the words curable intent stuck to me like black tar. There's no certainty there. No promises I thought.

I would think about death when I heard that phrase the first few dozen times. I would sit at the bottom of my tub in the dark bathroom, letting the shower run over my head, and feel the anticipation of emptiness and loss. Over two words.

Those first weeks I thought about life and life without Wil. Would I be able to keep on? Would I run away to Belize and volunteer to hold orphans?  Would I be able to ever move forward without him if it came to that?  What if this "cureable intention" would hold no power?  And then all his complications hit. Luckily it distracted me instead of taking over me. The death thoughts are back now for me too, but not with such raw emotion. More like a quiet companion.  Wil and I seem to have taken two roads to the same place.

Lately, and especially tonight after talking with Wil, what's on my heart is the true contrast between goals and intentions. I believe most of us live with the intention of wanting to be happy people. Maybe helpful people. A person who makes a difference. Someone who loves and is loved. Yet we walk around carrying goals...little tidbits of measurable desires that either lead to another goal or fall short. "I'll be happy when ______."  Only to find another replacement goal or become devastated when we never reach it at all. Even Wil and I, in all our Hawaii talk..."when we beat cancer, we'll go to Hawaii and celebrate."  When he's cancer free we will be happy, right?  Hey, there's nothing wrong with that and I think we should!  But what we are faced with every day, is that our intention to be happy, is happening all around us...right now...every time we stop to notice it.  We may never get to Hawaii. Happiness is sitting right here anyway, patiently waiting to be acknowledged. Happiness is in bicep curls, in snuggles. In watching him sleep.  In all the scary, the mundane, the gross, the heartache, the triumphs, the unknowns.

Our journey has created a steady stream of chances to intimately interact with our intentions. It feels out of place to say our intention is no longer a cure. Beating cancer will be the goal, that won't change.  But our intention to love life, and each other, with absolute abandon, to the very ends of where it will take us...these are forces that are not moved by the ebb and flow of goals...and that is where our peace, in the middle of our hardest times, has begun to bloom. Chapter One:  Let go of expectations. Chapter Two:  Stay Tuned.

Baby, baby

Jenny here.  We have big news...at least to us!

Wil has been 100% bathroom independent (and successful) for 5 days now!  He has also only been using the walker for community outings and never needs it around the house now. What this means...he can be home alone safely, I sleep through the night, less laundry, and we even had a family day at my sisters new house on Sunday. He's laughing, smiling, and really a participant in our life now.  Sunday will be our big trip to the movies for a date night!  We haven't seen a movie in the theater since probably September. This is a strange thing having been part of an active movie group for the past 8 years and seeing several a month B.C.

 He is still sleeping several times a day, but able to be up more. We can sit through an entire episode or two of Dexter or Walking Dead (in training for that movie!). At PT he is doing triple of what he did the session before. My baby is back, just a little more subdued. It really makes it hard to believe that it's very likely a week from now he will be back in UTSW. We will find out a timeline on Thursday. Fighting the fight. I know we can't stay in this place of quiet for long, but it's sure been nice.

As I paid the quarterly semen storage bill yesterday (yes, you read that right...and yes, the bill ACTUALLY says that), it made me think of all the conversations we have been forced to have in the last 90 days.  Many conversations are ones everyone should think about having, but that most of us would rather pretend won't be needed.

Being in my mid 30's, having "done the right thing" by getting married, getting through school and into a career...being in a "good place" to think about a baby...none of those plans made any difference the day Wil was admitted into UTSW.  From the first conversation with the oncologist we had no time to decide anymore. It was now or never to "make a couple of deposits" before Wil started chemo. Within hours, Wil was transported to fertility. We were told upfront that Wil will be sterile from the intensive chemo when all is said and done.

It's hard to think about a baby when you are fighting for your own life. We have no idea if/when/at all we could try for a baby. So for now, we keep hope alive on ice. I pay the quarterly bill and cry. I'd pick Wil surviving cancer over a baby time and time again, but that doesn't change wishing for both. Working in a field full of kids, it's always a reminder of all the things that may never be. (I've actually had several people close to me say, with the best intentions, "you are so lucky you didn't have children" and "maybe God has different plans." Again, I get it would be harder right now with kids...but man, what a cruel reminder of reality).

I'm comforted by the fact I have friends and family that have been at this intersection of reproduction. Not just because of cancer, but any issue that has kept them from their family dream. It's a lonely place to be in a world of families with kids. I know we still have options, and for that we are blessed. It's hard to think that by the time Wil is through treatment (if all goes as planned), I will just be shy of 40. Pregnancy, if it ever happens, will not just come to be without medical intervention.  Limited chances. Something you carry on your heart all the time. Families I work with ask all the time about kids. It never bothered me before when it was a choice on my terms. The human experience...you always think you have more time and that it will never happen to you.

But it's one of many difficult conversations we have had to have...add it to the list: Living wills, financial future, jobs, school, and "your (fill in behavior) is affecting us by..." boundary talks.  I know there will be more. For now, I am happy to have any conversation with my sweet baby. Happy he can talk, walk, and that he is in good spirits.

Wil has told me today he just doesn't think he will have the energy to blog. He doesn't care about things like that the way he used to, when he had a desire to have a well viewed blog. He jokes it only took cancer to get that wish!  His eyes get big when he sees the view count rising. I can't believe it either. We are pretty boring people who just want to work hard, do some good, and fit in a few more vacations.

He has agreed to tweet though, so I set up a twitter account.  Feel free to check us out on Twitter @fightbigfight where Wil will start giving out a few thoughts while I keep up with more extensive posts here.

You can also contact us and send love to him at  fightthebigfight@gmail.com. His other accounts are all but abandoned, and it's been a bear for me to get access to things (his memory on passwords has not been super accurate). So if emailing, this new account is a good place to actually catch us.

Much love.

Reach

Jenny here. Another few days have flown by. I'm already into the "Wednesday"  of my work week.

Sometimes I go a few days before I wake up with a thought on my mind I want to blog. People have said "just post a little blurb on progress."  The blog writing almost always includes tears, and tears, well, they don't always fit into the daily grind schedule. So I reserve out a space, I guess through writing these, where I am forced into a corner, but peaceful place, and process through current happenings.  I write these for Wil. I want them to mean something to him.

I woke up with one word on my heart today: reach. There are several definitions to that word and all of them seem to be happening at once these days--stretching, putting forth energy, extending, touching, attainment, success.  We are smack dab in to middle of "reach."

Right now I live with two men who say "meh" and "it's ok" and "no big deal" to EVERYTHING.  It may be a personality thing, but this morning, after 48 hours bathroom accident free/independent, after Wil fully changed his clothes and dressed himself for PT, after he sat at the table with me eating breakfast, I said ENOUGH!  This is miraculous!  It is wonderful!  This is the cumulative force of weeks and months of hard work to do these tasks solo.  And I will celebrate!

Wil shook his head at me like it's just another day (the head shake he has learned to do through many of my extroverted adventures and dramas in our marriage).  I took his face and squished it between my hands. "You did this. THIS IS A BIG DEAL! I'm so proud of you!"

I get it. No husband wants a one woman cheering section for going to the bathroom alone. When he reached for his shoes and actually put those on too?  There were tears for me. In the face of so many set backs in the past couple of months, my heart, so stretched, has to cheer.  I hugged him. And he hugged back.

My arms now reach all the way around. I don't even remember the last time I could literally hug him all the way around. He's never been a super cuddly person but he's always hugged and you forget after years with someone that a hug can feel so fresh and new after being absent. But these days, as I slip quietly into bed after work, I find him scooching up to me while still asleep, throwing both arms around me, and holding on tight.

People say be careful what you wish for...all I have ever wanted was more time with him, like this, just more time. In years past I'd been working so much we rarely saw each other, at times working completely opposite shifts. I could go weeks without sleeping next to him, days without seeing him. I didn't wish for cancer, but the divine plan of the universe continues to give me grace and energy and the true intentions of my heart along the way, even through the cancer. Now days, at home, I get a nap and a night next to him everyday. The sweetest words are hearing him say "come to the middle" (of our king size bed) because he feels safe snuggled in with me and the pups. We feel safe too. It's a lovely life.

Some day, when he reads these posts, I hope he sees that while I was celebrating the attainment and the success of tasks, even more I was welcoming home the touching little bits and pieces of my husband.  My sweet guy keeps extending himself to me a little more each day.  Sometimes its in the smallest acts (putting the seat down on the toilet, adjusting the TV so I can see while cooking supper, telling me he loves me, noticing how I feel) that I can see he is coming back to being present with me. He has enough of his own energy now that he is starting to do caring behaviors he just couldn't before.

Wil, my dear, sweet, wallflower of a friend and partner, forgive me for my enthusiasm and outing your success, no matter how trivial you think it to be. I just can't contain my celebration of all the "reach" along the way these days.  And when you finally read this Wil, I want you to know that there are many great love stories about the places, and reach, that love took people. There are great love stories all around.

But ours. Ours will always be my favorite.

41

No Apologies

Jenny here.  Today is Wil's 41st birthday!  I cannot wrap my head around the last year.  365 days ago, we had JUST moved into our house and were celebrating his birthday by watching the Superbowl among friends and boxes.  Next month we will come up on the year anniversary that all of this health jazz started, or I should say of us knowing there was an issue.  I feel extra contemplative, running those 365 days through my memory stores.  A lot can change in a year.

Wil, dear Wil.  He is doing more and more at home and PT.  He is still his biggest opponent and I remain his biggest fan.  I get plenty of serious (but wonderful and hilarious) glares as I push him toward what I KNOW he can do.  I keep telling him, if the shoe were on the other foot I would want him to do this for me...to push me and love with tenacity. Some day he may know how much it pained me to see him struggle, how every fiber of my soul wants to jump in and take it away, to do the hard stuff for him.  Some day he will know I turned my head away so he didn't see how hard it was to let him try and try again at tasks he used to do easily. I say, "try it again one more time" and then I walk away to keep composure.  But this is good stuff.  The right thing is rarely the easiest thing, right?  We are both getting stronger.

His PT is very upbeat and fun.  She encourages me to keep consistent.  She will never know how validating it is for me to hear her say to him at every session,"You sure did marry the right person!"  Outside of the medical professionals and the supportive people in our life, the day in day out can make a caregiver just feel mean sometimes to push so hard. And not every friend or family member sees it that way or keeps their opinions to themselves.  To others out there with a friend or family member who is ill, be kind to the caregiver.  The emotional, mental, and physical load is already so heavy.  Be careful about the extra load your opinions add.  You just can't know unless you are there...and by that I mean, day in and day out, and at every appointment.  I am finding the warrior wife inside of me more each day lately.  You can argue with me, judge me, question me.  I have spent almost 15 years of my adult life with Wil.  No one loves him more.  I show up every day and do the hard things...every day.  There is not a single person who can say that other than me. 

Side note and personal confession:  Every lesson I need lately can come in the form of a Bon Jovi song.  Nothing puts a smile on my face more in the car. "No apologies" is now stuck in my head.  But it's true.  I can't back down and won't from anything Wil needs.  You are with us, or not with us.  No apologies.  Wil is tired of hearing us scream sing out all the greatest hits when my sister and kids are over. :)

Gosh, where did all that come from?  I guess I am having a proud moment today after a really long week.  Wil did all his PT session without his walker this morning.  He did the bike.  He walked stairs.  He stood like a flamingo!  And he was the cutest 6'4", 330lb bird I have ever laid eyes on.  And I am having a proud moment for myself too, because we have done this together.  Very different roles, but as a team.  Internally I think I am gearing up for this next round.  T-minus a few weeks and we are back at UTSW.

We celebrated his birthday last night by another Super Bowl party.  Smaller this year, but with close people who Wil chose.  People that we have called "family" before, but mean so much more to us this year.  These are the local people who keep showing up.  As we slow clapped while he walked in the room, as we watched him blow out his candles and make a few funny and sarcastic looks for all the attention we were throwing his way, my heart smiled.  Wil smiled.  I looked around and saw people who I love everywhere.  There was great energy.  He said his favorite part was being able to blow out his candles.

We laid in bed by 9:30pm last night watching Hulu, with my head squarely planted on his shoulder.  "Hold my hand.  I'm worried and I don't know why," he said.  "I don't know what I would do without you.  I am sorry that I brought cancer into your life."

OUR life, sweet hubby.  And no one brought jack!  Cancer showed up through some sort of genetic and environmental collision.  It hit.  That's why we have felt run over!  I told him, "You did nothing wrong.  Our life is different.  But what will never be different is this...us.  We were great before.  Great now.  Cancer can never change that."  He continued to say how sorry he was, how he worries about me.  While I don't want him to worry, this is also how I know my Wil is coming back.  He doesn't really remember December much.  I sighed, then whispered to him "No apologies"  (and I even reframed from pulling out my finger mic and to finish the chorus).

Embraceable Actual

Jenny here. Please forgive the lateness of this update.  It's been a busy week.

Wil had his 2 week follow up with the bmt oncology clinic on Thursday, complete with labs and plans for the near future of his treatment. His liver numbers, all except for the bilirubin, are NORMAL!  But even the bilirubin is at 1.7.  A mere .7 from the target point. Other counts all looked great too. They did need to add a potassium pill and a beta blocker. The latter to try and lower his heart rate. My sweet guy's heart is always at 115+ pulse rate due so much panic at times. Tensing, sweating, hyperventilating. Each day is a big unknown in his mind. He had a chance to meet the oncology psychologist and will start seeing him periodically for support. I'm glad because I know he doesn't want anxiety help from this social worker ;-)

Seeing his worry at the appointment, his sweet oncologist came alongside him, put her arm around him and said "talk to me sweetie. Tell me about your worries". They are so kind and compassionate there. Bottom line of appointment:  Chemo to commence in 2-3 weeks!

A small victory for me was filing a grievance on the SNF. They finally realized the had never verified his SSN and DOB. I had wondered how they would bill insurance without it. Funny thing, I received our bill yesterday from them. A zero balance (that should have been over a thousand dollar total copay).  Take that SNF who treated my baby wrong!

If people were in my head throughout the day this week, they would find a whole lot of clutter, noise, and questions.

The question that is lingering, maybe even hovering, over me this week is, " How do you embrace the actuality of your life?"

I'm hoping I'm not alone here when I say I've spent a lot of time and energy in my life embracing what I have no power over--the past and the future. At times it has left me with very little time for now. The now is in my face all the time lately. In 2-3 hour increments. In leaps, and inches, and stillness.  In hearing him laugh spontaneously and out loud for the first time since Thanksgiving watching the Tonight Show. The here is up close and personal in helping him care for and relearn basics.

There are so many contradictions in caregiving. There is no place I'd rather be than home.  I drive FAST to rush home. Then sit in the driveway trying to get strength to start it all again.  I ride high on little successes like Wil putting on his own shirt with little help, then sob at the bank counter for reasons I can't explain. I look around and think, how lucky am I and in the next breath think how did we get here. I'm exhausted but I can't sleep.  I write these blogs hoping they will mean something to Wil down the road but am tired of hearing myself.

I don't think I'm alone in having spent a lot of time waiting for the next big thing or life event to send me over the top into happiness instead of taking the actual, adding a dose of wonder, and curling up peacefully next to it.

I've been more frustrated lately. With everything and nothing. As much as I try to stay toward the center, a lot of this is agitating. A lot of relationships that surround us are hard. I'm not always the caregiver or person I'd like to be. I want to hurry up through this part just as much as he does (and even while I'm telling him to slow down and be patient)!  I just haven't embraced it all yet.

Ironically, I cried into Wil's shoulder yesterday while trying to calm him down. I said "you know what sucks about cancer?  Everything else!" He looked at me strange. No one wants cancer. Gosh, the "big C."  I've come to accept it. Embracing cancer was a first mini step for me (Wil may have a very different view here from his perspective). I didn't know it was everything else I would resist. Cancer experienced in a vacuum, the place I'd like to put Wil, it just a medical issue to treat. Role changes, time, money, brokenness, relationships, family, loss of independence, drama...the everything else is what I'm left to sort through and work on creating a space for in my life and heart.  The actual life I have been given the opportunity to live is not the one I want to embrace but that one I must embrace to truly be happy.

I tell people in my work, "there is nothing to change, nothing to fix.  Breathe."  I help them come to a place of heart expansion. Opening up their life to make room for all that's here instead of spending so much energy avoiding. Embracing  the actual.  Today that made me realize why Wil in his unknown wisdom made me promise to keep writing. To make and keep a space for all the actualities. I'm still just as anxious to hear from him what these few months have been like as you all!  Until then, and while I'm in the middle of my own heart expansion, I'm embracing him and as much as I can.