Smile

Jenny here.  It's almost the end of July!  A few quick updates to share.  Monday and Tuesdsy were D days and donation is complete!!  The donation process, 2 weeks of multiple appointments for Wil's family member, is done!  The final cell count is not back yet. They use a math equation to determine the ideal amounts for Wil based on his body. The aim was a measurement of 5 (but in actual cell numbers would be in the millions).  Hopefully there is enough. At this point it is what it is, but they are telling us it looks good.  The cells are off to the lab and being programmed. We have a few more appointments for Wil to be ready for admit, and a few more steps (chemo and radiation) once admitted before day "0", otherwise known as transplant day. But it's all underway. We are so incredibly grateful for the donation and are keeping hopeful this will be a cure.

Although we've watched all the videos of other donation stories and had been prepared for the donation process, it certainly was a learning, heart wrenching process. That story is for another time and place, but someday I hope our experience will help comfort others. This is life, not a lifetime movie, and it may be some time before we move through the emotions of the last few weeks. In truth, maybe way past the transplant day, because now it's time to focus on that. Wil hit his lowest point last week under all the stress, but he is at a new place and focus this week. We are slowly checking wants off the to do list with movies and outings, seeing friends and family as people are able. In truth, finally using up some of the amazing gift cards to restaurants and movies we've had sitting here!  It's been fun to be out with him. Soon enough we will start the long journey and life restrictions over the next 12 months. And that list is long.

Wil and I, by nature and by our birth order (oldest children), tend to be people people. People pleasers. Responsible. Prepared. Ok, maybe also overly bossy or at least appear that way at times. Some even think those traits equal judgmental. In reality, we just like to plan ahead, think things through.  We are opinionated, I will give you that!  We have deeply over-thought things through and come to a place of peace by the time anyone knows what we are thinking (these blogs are not written on a whim, they are the result of countless hours awake at night, sorting through my own shit, racking my own brain about the meanings of facts and relationships).  We tend to be leaders as first born children. We may not follow where someone else goes, and even disagree with it, but we are also OK with everyone living their best life for them because, at our core, we want to protect and make everyone happy. 

Side note:  The single biggest issue I have with dear Mr. Clark is his need for harmony. How he will crucify himself if there is even one person he loves that is not happy. How he will sacrifice himself and his feelings and his own health to let others be happy and keep the peace. It's also the thing I love the most about him. It's why people love him.  There are so many moments I melt in his genuine love for others. You can love him, hate him, like him, scream at him, take him for granted, attack his character...but at the end of the day he still holds people in love no matter which side of the coin. He will still kiss a forehead and cry and wish he could have done more to make a situation he has no control of different.  Over and over again I know, without a doubt, why I married him. He is goodness, integrity, honesty, and light.  No one is perfect in actions and, given any sit down conversation with him he will be the first to tell you that, but in heart?  He is pure and can find that same purity in others.  Sure, people might say I'm kind, but I learn from him every day how to love a little deeper. His capacity to see people and hold them in his heart surpasses my understanding. 

So much of my life, although outspoken person that I can be, I have struggled with guilt as an older child. Taken on too much responsibility for situations. Held things together, maybe, just maybe, too much and too long...hoping and praying and thinking I can make it better for others by sheer will power. Time and again I have found this:  I can't make life happen for anyone but myself. I can't make people happy who don't want to be happy. And I can't get someone to love me who doesn't want to see my inherent worth, no matter how hard I try.  So the universe, in this particular year of my life, seems to keep giving me ample opportunities to have my faith rocked. Not in the way you would think. My faith in divine intervention, our hope, the trust in the goodness of this world...those don't seem to waver as much as my faith in me and my worth. 

You see, the disease part of this journey isn't the hard part.  Cancer is not the hard part for us. Does that make sense?  I'm not sure it can until you are faced with something like this, but hold on to this in case you do find yourself in our shoes.  When I talk to other caregivers and patients, this is what I hear over and over (and so I feel I have confirmation that this crazy idea is reality for many):  illness is not the hardest part. It's everything else. It's everyone else. 

Disease is a medically managed, or possibly not manageable, part of this experience.  There are guidelines and plans and plans about plans. They don't all work out, but your care is mapped out in a logical pattern based on those who have gone before you. Medically, everywhere you turn you find a reason and a support. The clinic and the hospital are our safe zone.  The procedures are painful but always have a specific why that can be answered in the here and now. 

Our relationship to ourselves, to life, to others...the relationships are the hard, heart wrenching, puddle of emotion on the floor parts of the trip. They shake us up, strip us down, and cause pain for sometimes no explanaible reason other than this is just life...the why is often somewhere in the distant future. 

Disease is disease. It's not personal and doesn't discriminate. The actions and messages and issues and human energy the swirls around us, the sometimes uplifting but also sometimes dagger energy, is what is hard to sift through without hemorrhage of heart.  There are so many moments where we question ourselves as the arrows are thrown. We know we are not perfect but we try do our best and given the load, I'm proud of how we are surviving. it's all we have.  It feels shattering to have that basic human worth, the central heart space of us, questioned, even though I know it's not my place to have all the answers. 

I write this blog to process all the mud and muck and come to a place of peace. This past week taught me that even when I am just in process, people may take this process personally for them, instead of just a general "aha" place for me. I hate to break it to you all...this blog is all about me and my journey as a caregiver. I hope it speaks to others in a tough spot, because I'm not trying to teach or scold at all.  At the end of the day, it's my work, my purge of emotions, my trek through the hard parts--for my own survival. This is not a cancer patient blog. It's a caregiver blog. It's how I stay vulnerable and visible to myself when all of me just wants to curl up in a ball and hope I wake up to a different set of circumstances. I'm honored anyone else has stuck with the ups and downs and kept reading!  I'd still write it even if no one did though. 

On Saturday morning, after a few rough emotionally packed days, I woke up with a song on my heart. Does this happen to anyone else?  Have you ever heard a song for years, or maybe your whole life, and then one morning, as you wipe the crust from your eyes, look over at your sleeping love bug, and think about the week in retrospect, just have a a familiar song bubble up?  And not only that, but bubble up with meaning to your life it never had before?  

I'm sure it's one you know, so I will let the song sing it's self through the lyrics:

"Smile though your heart is aching

Smile even though it's breaking

When there are clouds in the sky, you'll get by

If you smile through your fear and sorrow

Smile and maybe tomorrow 

You'll see the sun come shining through for you.

"Light up your face with gladness

Hide every trace of sadness

Although a tear may be ever so near

That's the time you must keep on trying

Smile, what's the use of crying?

You'll find that life is still worthwhile

If you just smile"

You know in all my years that song, in it's Nat King Cole version that plays in my head, has always made sense...in my head. Waking up after a week of soul breaks, picking up the pieces of self, gluing me all together and seeing my worth, my warmth, my goodness, even when others don't...this song for the first time hit my heart space. It's not about putting on a happy face and pretending to be anything you are not. It's not about denial of the Ick factor that presents itself to say otherwise. There are so many feelings packed into those few lines. 

No, it's not about faking it. It's about choices. 

It's about taking happiness as a personal mission. It's about confirming your own worth. It's about not waiting for the pain to subside to let life fill with love and hope again.  It is the fact that choosing to greet your life with a smile is here and now and even compliments pain, agony, doubt, fear, and anger quite well. Happiness is not the absence of those feelings, it's the acceptance of all emotions and the choice to move forward. So we smile as a nod to our authenticity and worth and to the questions still unanswered. We smile to inherent beauty of ourselves and those around us inspite of imperfections and hurt. Just a few more things cancer, or any part of it, can't steal.  

Sweet Mr. Clark, I get it now. I somehow can feel why you keep smiling through all the Ick without complaint. And I feel honored to be along side you through it all. You my hubby, will always be my favorite human. 

"That's the time you must keep on trying

Smile, what's the use of crying?

You'll find that life is still worthwhile

If you...just smile"

Restiveness

Jenny here.  Lots of little tidbits to share about the next few weeks. Of course everything is tentative and will depend on each piece falling into place, but it feels like we are closer and closer to the transplant.

This past Sunday we had a great time checking a few things off the old "must do" prior to post transplant list.  In truth, we are gearing up for more life changes that will begin soon when Wil admits and it will continue for a year or more. Coming towards 9 months of treatment already, much of which has gone in some unexpected ways, it's hard to believe I am writing these words:  more life changes. 

Transplant is the potential cure, right? The no more chemo and brand new immune system treatment (did you know that if your donor has a different blood type you actually CHANGE to their blood type?  That's how it goes...they wipe you of everything so a new immune system from healthy cells can grow), right?  Yes, we hope so!  Getting there will be days, weeks, months, and maybe years before we have a more "normal" life again.  If there is such a thing after leukemia!

So on Wil's list first, among other outings--see a movie at the drive-in.  So we loaded the car with pillows and blankets and lawn chairs, picked up a niece and nephew, and headed off to see the Earth to Echo/How to Train Your Dragon 2 double feature. What an amazing night!  I have to admit, I was not looking forward to the Texas heat and had agreed for Wil's sake, but the gentle breeze, the 20 "I love you's" from the kids, the smiles and excitement...it made for a carefree night. Good for the soul. And in the dark, under the Texas night sky, by the light of animation, bellies full of sugar and junk, complete with bugs and dirt...Wil leaned in and whispered in my ear, "I'm really glad we got to do this."  Simple. Just like my guy. No guarantees we will have another night like this...not in the next 6-12 months for sure, honestly who knows the future anyway. So we savored the night, knowing these experiences, all of life, feels so sacred lately. 

There are definitely not enough days left to fit in all the good immune system fun we'd like. But we are making the most if it in between the prep appointments for transplant. 

First off the list, the insurance has approved Wil's participation in the trial!!  It took a bit of clarification and extra contact with the doctor, but ultimately it is a GO on that end. The RN transplant coordinator has been in many meetings with the pharmaceutical company as well.  It's nice knowing these pieces won't get in the way of the medical procedures. There are so many extra moving parts being a part of a clinical trial. We are so blessed and excited to have this opportunity though!

Last week Wil had a PET scan.  This scan requires a radioactive dye with glucose to be injected (from my basic understanding). If there are cancer cells, they feed on the glucose and will light up on the scan. No surprises at all with the results...the lesion on his back is still there but not active and so it's not an issue at this point.  They were also looking to make sure there were no areas that lit up as indicators of cancer elsewhee in his body. He's in the clear!  All in all unremarkable. 

Thursday Wil had to carry around the "jug of shame," as I joke because people always look embarrassed to have it at clinic, to collect a 24 hour sample of urine, which he returned on Friday. This was to look at kidney function. Results are still pending but we are not expecting anything out of the ordinary. 

Yesterday, Friday, was an all day clinic marathon. Wil had a pulmonary function test in the morning, followed by blood work at the clinic, meetings with the transplant coordinator and research department, a psychosocial by the clinic social worker, EKG, and a chest X-ray. It was a long and tiring day, on 3 hours of sleep for me since I worked the night before, multiple buildings and valet parking, but SO worth it because we are now nearing the end of the the pre-trial tests.  This coming Monday he will have labs again and an ECHO of his heart.  All of these tests are for baselines. Transplant, although a possible cure, is not for the faint of heart and can have many twists and turns and complications. Expecting this, they want a great snapshot of all main systems pretransplant. 

After Monday, we sit tight with only weekly blood work until the donor cells are manipulated in the Houston pharmaceutical lab and sent back to UTSW. Close to their arrival back in Dallas, Wil will get "mapped" for the total body radiation he will receive during his pretransplant days at the hospital.  His admit day could be anywhere from August 5-13 depending on the donation arrival time. Nervous excitement. 

I, myself, have been struggling with the questions that arise from hurt, the burden of things unexplainable. I think Wil has been too, but I will speak for me alone right now. The knowledge that, as much as I hope people can understand our intentions that, our very needed encapsulation to survive this next leg, we may hurt some we care. We talk a lot about this lately.  The staff at UTSW tell us, this is the time to be inward with your energy.  Most things, and some relationships, have to be back seat priority. They tell us in a year or so Wil might have energy for more.  But right now, nothing is more important than conserving all the energy we have left for making it through transplant and 100 days and then 6 months and then 1-2 years post transplant (the mile markers, so to speak).  

We have never said our feelings were any more important than anyone else's. Or that others should feel any one way. What we hope is that the people who love us...the ones who want the best for us...will understand our enveloped life is not meant as anything other than to protect and preserve Wil's life and fight. We hope they will take time for empathy towards us in that regard.  Validation and love don't require agreement. Just understanding. 

Lately I feel so angry at times and seem to get drawn into unnecessary drama I would not usually be tempted by. I walk to edge some days between a heart overflowing with love and a mind filled with useless worry and frustration.  I realize that, unless you are in our shoes, you might not know how to respond.  I try to find compassion, I'm just weary. We are under the greatest stress and journey of our life...please know we also don't know how to gracefully respond sometimes. So we do our best and hope people see the heart center of our intentions.  I just feel so...restive this week. So much is out of our control. And I've never been great at patiently waiting. 

I have the words, "Love life's questions" on my cube wall at work. I know in my head that this is a journey best walked in a spirit of process vs goals. It's just so hard when you want your most precious person to live and not be in pain anymore. It makes you want all the answers upfront to try an prepare. If only...

I just want to cover Wil in a million layers of love now, free from stress and drama. I hope you all will help me in this plan to wrap him up in positive energy...envelop him in prayers...make his emotional load as light as possible.  I hope everyone around him, in his many circles of family and friends, and even strangers, will join me in the effort. Feel whatever you need to feel, but please process it outside of your relationship with him.  Support each other if you are worried, angry, fearful, etc. and then send him all the positive regard you have available. 

If you know him, you know he struggles to not take responsibility for EVERYTHING and everyone he loves.  When we met with the social worker, Wil talked more about everyone else in his life than himself. The social worker gently told Wil to decide carefully how he spends energy.   He said Wil needs to be selfish right now for the sake of beating the odds. For Wil, this means all his energy goes toward building a new immune system. 

And then the social worker looked at me. I'm supposed to conserve my energy too. For me, to carry on the life tasks solo while caregiving. Wil won't be able to clean house, do the yard, take out trash, care for the animals, etc. I will need to keep up on all of that while still working 2 jobs, cooking from scratch each day with all the dietary restrictions, taking him to more appts then before, and cheering him on. 

So please know, we still love all of you, but we can't spend energy on other people's feelings right now.  I know that may sound harsh. But this is life and death stuff and this is our new reality. 

I've been reading works by Rainer Maria Rilke this week. What an inspiring challenge to my anger and worry about people and how life will shape up in the coming year. There are really too many great quotes...I think I could highlight most of his writing.  This one, hit home:

"How should we be able to forget those ancient myths that are at the beginning of all peoples, the myths about dragons that at the last moment turn into princesses;  perhaps all the dragons of our lives are princesses who are only waiting to see us once beautiful and brave. Perhaps everything terrible is in it's deepest being something helpless that wants help from us. So you must not be frightened if a sadness rises up before you larger than any you have ever seen; if a restiveness, like light and cloudshadows, passes over your hands and over all you do. You must think that something is happening with you, that life has not forgotten you, that it holds you in its hand;  it will not let you fall. Why do you want to shut out of your life any uneasiness, any miseries, or any depressions?  For after all, you do know what work these conditions are doing inside you."  

If asking for no drama is too much for folks, distance is OK. In time, if all goes well, we will be back to supporting others again and able to let in the full array of feelings from you all. We will unwrap again eventually, I promise. Life has definitely not forgotten us these days. Our love and marriage has grown in ways it could never have without cancer. We hope you will still stay in contact and keep cheering us on too, we need your presence near and far, to feel we are in your hands for a little while longer too. So many of you have blessed us in ways we didn't expect already. 

We hope you understand the greater need though--only positive energy flowing our way can be accepted at this time. If it's not love and light, we can't invest energy into it right now. Why?  Because we have what seems like mountainous terrain to cover in the fight yet and this leg comes at a time we are already low on energy....because we carry with us heavy loads of our own feelings already. It will be all we can muster to just deal with our own experiences alongside the actual physical exhaustion we are sure to meet this year.  And because above all else, Wil says, "I want to live dammit.  That's all I can handle right now."  

As his wife, friend, advocate, I hope you'll let him do just that--focus on him, and him only. 

Much love. Much light. 

Segments

"Eat this sweetish segment or spit it out. You are free." Anthony Burgess

Jenny here.  We have some updates from clinic today!  We met with both the oncologist and transplant coordinator RN. First, the BMA preliminary results are in...drum roll please...the initial flow report continues to not show any visible signs of leukemia.  Just as before, results are given with caution because 1.) We know that this disease is hard to see as it decreases and hides more AND 2.) It always wants to come back.  BUT, with that said, we really are very happy to hear these results. It also gave Wil the good news he was hoping for today--his oncologist feels, given the upcoming and likely transplant, he has had enough chemo and we can focus on him gaining strength in the next month in prep for the next leg of the fight.

The tentative timeline is this:  

7/16 Donor arrives in DFW 

7/17-7/29 Donor undergoes pre transplant work up/checkup the first day.  About a week later the results will be in, assuming the Donor is cleared, prep for the donation will start, followed by donation commencing over the next week (2 days of giving blood that is circulated through an apheresis machine to take out T-cells that will be frozen).

7/30 donation will be sent to Houston to a pharmaceutical company to be altered with a retrovirus or "suicide switch".  This is where I start to have visions like we are a part of the show Alias!   This will take about 16 days. 

8/12 If all goes as planned, Wil will admit to UTSW to begin the heaviest, most brutal chemo so far, with added full body radiation.  The intention is to strip him of an immune system so he is a clean slate for those healthy stem cells to grow. Once that is complete, and the donation is back from Houston, we will have our day "0" in the transplant world:  The day someone else's life force is dripped into my love and will *hopefully* be the beginning of a new immune system.  

He will be in the hospital about a month.  The first 100 days are nail biters.  GvHD (graph vs host disease) is the real enemy here. And with a 50% Donor match, the likelihood is greater.  Its why under standard protocols they don't use a 50% match. This is where is gets super exciting in terms of the art of medicine and technology. If Wil develops GvHD, his T cells attacking his own tissue as a foreign entity, the team will first try a standard steroid protocol to fight it. If that doesn't work, they will inject this fancy drug that will activate the suicide switch on the problem T-cells and leave the cooperative ones alone!  This will preserve his immune system and aid in a quicker recovery (the normal steroid approach can mean up to a year of heavy steroids and Wil doesn't tolerate them well...so this study means a quicker transplant, quicker recovery, and less steroids...a triple win). It's been used in the UK for over a decade with good results...it's just not FDA approved here yet. Wil will be the first UTSW trial participant (other centers have already begun, but only 36 total patients in US will be used). 

This could be a game changer for so many people down the road. Not only could this be his cure, but him and his Donor are potentially changing lives and outcomes for many others in the future. (And Wil is the talk of clinic now. His oncologist is SO thrilled for us and for the world of oncology.  Other than us, no one wants to beat this more than her.  We love our team). 

But we have learned along the way, with each wedge of this process, that there are no guarantees.  

Side note:  Whenever I haven't seen a familiar face at clinic for a few weeks I think about their fight. And if they are still alive or how they are doing. It is hard not to wonder.  A sweet virtual friend lost her hubby, post transplant, post 100 days, this past week. On Saturday I thought, this is her first Saturday without him. On Sunday I thought the same. She writes and says, "It's going to be a long and tough road ahead but I will move forward.  Prayers to you!"  I'm stunned by her grace and heart in midst of the one outcome they fought so hard to avoid. These are the people, near and far, we are surrounded by in the world of leukemia. I'm honored to know them. 

We will continue to hope, pray, rain dance, chant, absorb your energy, and, most importantly, live and love as well as we can while we can.  And these coming 30+ days pre-transplant we plan to live it up!  Well, the new kind of live it up...dine in a restaurant, see a movie, love on the dogs, see more people, kiss on the lips, and eat fresh produce. And maybe throw in a low key theme party before he admits he he will let me. We are such risk takers these days :)

This transplant almost doubles his survival rate. It's something to hold on to.  We are learning to take it one day at a time in every circumstance. The transplant coordinator reminds us to take it day by day. So we fight like hell each day.  Then we let it conclude, in its own little section of our story.  And then we get up again. 

What is so hard to wrap my head around is the combination of living day to day with the knowledge that if this works, he will be followed for 15 years. Up until our 30th wedding anniversary!  I think most of us think about the future, more so in the next year, to 5 or maybe 10.  15 years of checks and thinking through decisions about careers, kids, vacations, moves, etc while in the shadow of cancer...leukemia could happen to any of us.  Once you have it though, it changes the lens through which you see the compartments of life.  It just does.  Yes, I can see us, 15 years from now, but I don't have a clear picture of what that life looks like outside of the present moments. I do dream, but real life faith has taught me to not cross off any possibilities and that we can be ok no matter what--that if given some other ending, it can still be ok.  

Today, on the way home from clinic I said, with a flirtatious smirk I've been giving him for years, "what would I do without you?"  He used to say "I don't know" and smile back. Now he says in a certain, matter of fact tone, "I know you'd be ok, you'd figure it out."  My head says this is progress in both of our emotional worlds, a new state of ultimate love in our marriage. I can love you so much and not see a world without you, but I know the love we have tended to in these 15 years together is also enough to make it through to whatever other side this cancer thing holds...regardless. My head sees that as progress, but my heart still struggles with it every day. 

With great excitement, met with equal fear, we enter this next segment and hope you'll send us your positive vibes. The remaining 2014 is set to be quite the adventure!  Love, still constant in this journey,  is about showing up for each other, knowing the risks as well as the possible benefits.  It's about seeing the potential pain of it all but leaning in and not holding back...repeated each day, it makes for an exquisite parcel of life to share with someone as beautiful as Wil.  To share with those of you who have given us your time and love as well. Extracting the sweetness or spitting it out.  It's up to all of us. This love we share?  It's so much larger than what even lies ahead.  It's not bound by anything, not life, not death, and certainly not cancer. 

Violet Flower

“The violets in the mountains have broken the rocks.”
- Tennessee Williams

I have fond memories of violets.  My grandmother, who loves planting and caring for flowers every year, even in her 80’s, always had violets.  In the summer they were among the sea of colors in her flower beds.  In the cold Minnesota winter, she would tend to fuzzy leafed African violets inside her window sill.  As a big sister, and sometimes tyrant jokester, I would make special made up recipes while playing house with my sisters, making them try a bite of violets in order to play with the big kids. Those small blooms, peeking out from heart shaped leaves, were petite constants in my childhood.

Violets often bloom early in the spring, a sign of renewal, even though they have also been used for mourning.  The Romans saw them as flowers for resurrection.  The Greeks used violets for medicinal properties, especially respiratory issues, and as a natural pain relieving aspirin.  And in some ancient practices there are stories of violet leaf concoctions stopping cancer growth.  Violets have seen their way into hearts through many countries and are the state flower for several states.
It’s no wonder that, since the time of ancient civilizations and until today, the little violet flower has been the symbol of sweetness, humility, and delicate love.

Cancer doesn’t give you much notice.  It doesn’t discriminate.  It doesn’t give you adequate time to prepare.  And it keeps moving forward, even if you feel yourself being dragged along by it…either in disease or recovery it just keeps marching on.  But when we lost our Bella girl, time felt like it stopped.  Like everything else along our road, we have had to keep moving, not on or away from feelings of loss, but alongside them.  Grieving is different for everyone, but grieving on top of grieving is no picnic.

A few weeks ago, in my process of healing, I started looking at Chihuahua pictures online.  I would click through google images and both cry and smile.  We had talked about another pet some day. Eventually, maybe later in the year, Wil had given a thumb’s up to thinking about another dog because he knows my heart. And, as an added motivation, Tyson had not been himself since Bella’s death...the house a quiet stillness.  We have had no intention of looking for a puppy though.  Life is busy and puppies are fun, but require so much care.  The online pictures were just of therapeutic value to me. Nothing more, nothing less.   

I had looked at rescues too, disappointed to find that there would be judgments about Wil’s diagnosis and treatment.  That thought was too much for me to emotionally maneuver so I stopped thinking of adoption and felt a little tinge of dispair.  We knew when the time was right though, Tyson would need a female companion, hopefully smaller and younger than him.  For me, a house without a Chihuahua hasn’t felt much like home anymore.  Yet it has felt impossible to get the wants and needs met while Wil is still battling. 

I had thrown out the idea of getting another pup to some coworkers and friends, with mixed reviews.  There were two camps:  1.) “Your husband has cancer, isn’t life complicated enough?” and 2.) “Your husband has cancer, do whatever the hell you want!”    

It’s funny how the best things in my life have never come about on my time frame.  Thank you divine universe. 

It is with much happiness, with a full heart and joyful tears, that we announce the mountains of our journey have been blanketed in regrowth, from a random wonderful picture I would stumble onto--a little 2 year old, long hair Chihuahua girl.  With a complicated first pregnancy, making her of no value as a breeder (her original fate), a little furball appeared in our path. For her, a chance at a first ever indoor life, bedazzled collar, real toys, and most importantly—her first family.  For us, a chance at healing.  She is sweet, delicate, humble…and growing our hearts a little each day.  Tyson’s ears now perk.  He smiled the night he met her…the first time I saw his face truly happy since Bella died.  His heart now seems full too.

I’m not sure this new fuzzy friend will cure cancer like the medicines of the violet flower, but life somehow feels complete again in the midst of the chaos…like we are starting a new stage of renewal through giving love to our new girl, little Violet.

Much like the flower, I hope my documentation of our journey has shown the delicate beauty in life realities, even as we face deathly obstacles. Its why, despite our life being busy and complicated, we choose to keep living.  We choose to keep loving.  We choose to enjoy the small pleasures this life can hold while we can hold them in physical form.  We choose to laugh, to hold, to kiss, to give refuge.  Life could end tomorrow.  And in the light of that reality there was really only one choice once we met Violet, a sad little creature without the safety of true love—it was to hold on to the notion that the cancer will never be bigger than the dreams we share as a family.  

Welcome little flower…we love you already and you have already broken through some of the pain.  We feel like Bella sent you to us.  We miss her still, but can see a future in you now too.  This day has a new sweet fragrance.   

Deep breath in.  Onward.

Alternate Endings

As a child growing up in the 1980's I, like many others my age, fell in love with reading.  Not because of school reading programs.  No, it was for a series of books called "Choose Your Own Adventure."  There was something magical about being the explorer in foreign pursuits or lands, knowing that in several pages you would need to make critical decisions and turn to the correlating pages that went with it. You could read the same book over and over and get a different ending each time. Your trajectory as the hero or heroine was not your friend's...it was all yours. Some choices made for victorious last pages and some...well, not so victorious.

I've thought about these books many times throughout my young cancer caregiver journey.  How the options we choose lead us to the next and the next and the next outcome.  Only, in the world of medicine, and art of oncology, the whole team of experts is along for the ride and making their guesses at what is best case scenario for my most loved person in the whole world.  Sure, we sign the consents. I look back on choices we have had to make...ones that led to complications or other impossible options that no one could have anticipated. Yet, in my heart, I would have made them again because at that moment it was all I could do with the time, emotion, and money I had to offer.

At age 36 I never thought I would have to put my husband, functional and wonderful before leukemia, in a nursing home, decide if there was hope for biological children, feed him, bathe him, watch him relearn to speak, haul around a wheelchair and walker, watch him struggle and want to die, wipe tears, among so many more things. Although caregiving has continued to transition as he regained skills, those days of diaper changes and lonely, sleepless nights, while his body was so toxic and he was psychotic, stay with a person. Just the other day at work, a coworker took a call from a person having to make decisions about a parent. It all came flooding back. Memories stick to me like glue as I navigate the duality in my life as it is for the time:  both a caregiver and wife...Advocate and friend.

It all makes me a crazy, ferocious, mama bear. And I make no apologies for fighting for him every inch of the way, even if unpopular. I will stand in the arena alone fighting if I have too. When I see him cry at clinic and tell the nurse he is thankful for me fighting, I know I've loved and lived to my fullest. No matter how uncomfortable it makes anyone else.

As a caregiver I am tired and task oriented. As a wife, I walk around with multiple alternate endings on my heart every day, just like those books.  I try to use reason and logic to help my husband make treatment and lifestyle elections that will hopefully give him the best verdict long term and in my battle to preserve our dreams. I sometimes think about life only in 3 days stretches, in terms of appointments and medications. I also think about life and what it may or may not look like in 365 days from today or in 5 or 15 years (the big mile markers for follow up). I think about how to function on 4 hours sleep and popcorn and diet coke on the bad days. I also think about death and how to survive a life without him, knowing the odds are against us but unable to truly imagine a house without him in it.  I forget he thinks about me too, now worried if I don't answer my phone because losing me, on top of cancer and wondering how he'd survive, is just as scary for him as it is for me.  We talk about plans and options in the event I die before him.  I think about the hope of good labs and maybe even a nap for me before working the night shift at work. I think about recovery and the new life that could spring forth from the ashes of the forest fire.  And everything in between.

The difference between my childhood choosings, in those fantasy reads, and nitty gritty, sobbing one moment, elation the next--the crazy life adventure that is happening now, is this:  there is no going back and getting another crack at the drama...and the story is dependent on so many people.  I can't leave the scene whenever it's grown too intense.  Others feel our stress for sure. But the story is every moment for us and we can't ignore it, take weeks to make decisions, or run off. I'm not saying I want people to stop living. Goodness, go out and live to the fullest!  Take every opportunity to live your best and love wide open. Be courageous in your choices. That's the exact thing we are trying to do.

Side note:  Yet the mama bear in me is so grow-lie these past weeks because I don't get a break from cancer and when people let my hubby down, don't call him, make decisions that affect him when he is already weakened, it tears me apart too.  And it's hard to wrap my heart around. The people drama of this journey will be the true scars that remain when it's all said and done. Whatever the outcome.

I've carried a fair amount of criticism on my shoulders lately for my feelings along the way, for being open about this process, from people so close that it hurts extra deep. If you are looking for a happy and calm mama bear from me, I can only assume you haven't had to walk and stand in the reality of death everyday. There is no one right way to undertake such a perilous, wonderful path.  No one way to feel or be or breathe. And at the end of this I will feel nothing but resolve because I know, in my heart, I have loved fiercely in spite of the doubts, fear, anger, hope, and questions. I never knew love or faith in such a raw way until cancer. And those two pieces to whatever ending we find, is what I hold to tightly.

To those that have said to me "just have faith:" lean in a little closer. You will see we are draped in faith each day. But faith without actions is not a living faith. Wil says he is living in faith every moment.  But it's not blind...he is fighting like hell alongside the prayer. We believe God calls us to do our part and surround ourselves with human healing hands that are divinely guided. Faith doesn't have to be passive to be true.

Thank you so terribly much to those people in our lives that "get it."  We nourish our souls on your kindness, strengthen ourselves through your encouragement. You are unsung heroes. Some day when I have energy and time, you will hear from me personally how much it meant. Just know it's not taken for granted.  As much as this life can sting, our supporters bandage us up every time so we can keep going.

The updates:
It's been a physically and emotionally draining two weeks for Wil's recovery and transplant planning.  3B recovery has been the worst. Hours and hours of blood transfusions to keep him going and platelets to keep him from bleeding it out!  His body is just more tired these days.  His DVT in his leg is slowing getting better but could take months to resolve. The swelling makes it hard to walk well, painful with each step still.

We've accepted the clinical trial, a family donor has been identified and accepted, and now we wait. Wil will have another bone marrow biopsy on Thursday afternoon to make sure the cancer is still controlled and he is ready for transplant. The insurance needs to sign off on their portion. The donor needs to get here and pass all the preliminary tests. We are aiming for the trial to start July 17th.

And then we will wait some more as the stem cells are frozen, sent away for 16 days to a lab, and manipulated to have a retrovirus attached (deactivated). Once those cells return back to UTSW, Wil will have the most intense round of chemo yet, along with radiation, to completely kill his immune system, leaving his body a clean slate for healthy cells to be transfused into him and hopefully grow (mid-August).

The coming 100 days post transplant will be the nail biters...as we wait and see if his body rejects the cells (called graph vs host disease or GvHD). This is all too common and also potentially life threatening. But here's the cool thing about this trial--those lab T cells with the retrovirus, should they get out of hand and attack Wil's tissues, the research drug can be used to activate a suicide switch and destroy only the cells causing issues, leaving the rest of his immune system alone. How cool is that?  Scary exciting. It could save his life. And help change the options for treatment for others in the future.

Because the process is going to take a few weeks to get going, Wil may need another round of chemo before the transplant round. Thursday's biopsy results and his doctor will decide. We want him as strong as possible for his month in the hospital during transplant. Yet we can't let the leukemia cells take off again. Such a balance.

So we wait while we continue to choose life at every page turn and in every way we can. We hope that we have picked well. Who doesn't want "victory?"  More than anything I've ever wanted, prolonging my life with Wil is my dream ending.  But it's knowing that the dragons slayed along the way, the leaning into our fears to take passionate steps out into the darkness, to loving the questions and truly liking the warrior within that is emerging...that is what makes us each the hero to our own stories, no matter what that last page will read.

Gravity

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

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

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

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

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

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

Gravity:  noun

1.  Force that attracts a body towards any other body having mass

2.  Extreme importance, seriousness

3.  Solemnity of manner

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

It's been the conversation of the day for Wil and me. How we have been pushed and pulled at every turn relationship wise lately. Some people, even close friends and family, we have tried to pull into our journey simply don't come close, they stay at a distance. Sir Isaac Newton, with all his falling apples, described gravity as mutual attraction between any two bodies in the universe. Its heart wrenching to feel the loneliness that, for whatever reason, our gravitational attraction, our mass, is not equal or reciprocated by those we had expected to depend on....While others we would have not expected have lovingly wrapped us up in thoughts, prayers, and assistance. Leukemia has definitely had its surprises. 

  

We have been offered a clinical trial that is amazing. Only 5 people from our area will be chosen and only 36 in the country. In Europe they have had good results already, but the new med is not FDA approved here yet. Cutting edge. It's the reason we came to UTSW. The trial takes what Wil already needs, a bone marrow transplant, and makes it a better outcome. Less wait time because they can use an imperfect relative match vs hoping and waiting on an anonymous donor. Less recovery time. Less chances he will need steroids again (do you all remember what steroids did to him on a 28 day protocol?  Imagine a whole year of those things...I'm not sure he could tolerate it). And a real fighting chance to beat this thing. No more 30-35% survival rate. With this trial we are looking at 60% or more. Of crossing over that line of more people in his same situation living vs dying. The gravity, seriousness, of his disease instantly improved...his chances of life, of me having a husband to come home to for years to come, almost doubled. 

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

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

 

Middle-ness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"Live out loud."

"Forge meaning, build identity."

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

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

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

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


Sent from my iPhone