Green

Jenny here. 

Once again, I have contemplated this blog for months.  In my head I have written pieces of it every day.  Honestly, it blew my mind, looking at the blog today, that’s it’s been months since I wrote.  I see I have even saved several drafts on Blogger along the way (perhaps I will publish some "lost blogs" that I never finished at a later time).  I’ve tried to post on our Facebook page our happenings and thoughts, which felt easier. Little snippets of life.   I think this “life post-cancer” piece of things is less written because showing the whole of it is more difficult for me to put into words. 

 

How do you describe the vast lost-ness and big-ness?  It’s much easier to post lab results, share the terror of crisis moments, then to find a way to relay the quietness of living a new life you don’t quite recognize.  I know I have said it before, but it’s a whole lot of soul searching, after the ashes settle, until you get to the work of rebuilding.  I think last year, for me, meant drawing up new plans and getting building permits.  LOTS of ground work before any construction could begin. 

For some reason, the past few months have shifted us, again.  We aren’t as much in the planning stages of creating, we are actually living it out as is—still messy, still unknowns, still times when measurements need be retaken or redone.  Our “house” is bare bones, but there are beams up…and I am starting to see the shape of things that may come. 

We have been busy. We have been out and about. 

December was a big trip up north to Minnesota. Time with grandma. Snow. Dogs. And many miles. 

 

We've spent a majority of time at home though, because we love just being there. There's been some fun along the way too. We are still diggin' Fort Worth and, when we can, like to get out for a stroll, show, or dinner. Every few weeks we go to Aveda together and get our hair done. Wil waits because mine takes longer.  We get breakfast or lunch, depending on the time of day. It's sweet. (Yes, we are THAT couple, and we've earned all of it!). 

We drink lots of coffee. Stay up late. 

It's a nice, simple life at present. 

 

 

Basically it’s this:  every day gets more manageable lately.  The moments of sadness, fear, and bewilderment get shorter, less pronounced, less intense.  The joy and gratitude has been there all along the way, but in the stillness of this leg of things, both possess a freedom now.   I can only describe it as the difference between carrying joy and hope versus walking around with joy and hope by your side.  The shadow of cancer is there in each scenario, the joy and hope is just as strong, but your arms are open to hold on to other things when it's a partner, not a passenger.  

 

Joy…hope…these feel different when you don’t have to hold on to them for dear life every moment of the day.

On Tuesday we spent the day at UTSW for a 6 month check up with oncology.  While Wil has had some follow-ups with other doctors, we had not been back to BMT for 6 months.  He has had no blood work since then either. 

Side note:  The night before clinic this week, I had to ask hope and joy to crawl up on to my lap again.  I didn’t sleep much.  I wasn’t in a state of panic, but the reality and memories tend to flood back at 3am, in the dark of night.  It’s impossible to completely describe.  There isn’t the same fear of cancer, because it’s a known we have with us—always.  But there is a deep breath, a holding of space, for what it means to look forward when you know up close and personal that the worst can happen to you.  I honor that space, and I honor that feeling of held breath, because within it lays gratitude for each day and each next sip of air. It's just hard to sleep while holding it. 

Walking in to clinic was surreal.  Flashes.  Emotions.  Seeing the door that he came in through via transport 3 years ago.  Have you ever felt like you were back home but...not really?

 

After checking in, we were directed to sit in the big waiting room.  I whispered to Wil, “We’re in Gen Pop now.”  In the past we did all our waiting in the BMT small waiting area.  100% masked.  But Wil’s mediport came out at the end of 2016, his counts are normal-ish, and he’s OK.  So there we sat, unmasked, with everyone else.

 

I looked around at the people in the varying degrees of treatment and physical strength.  A few in wheelchairs.  Some with oxygen.  There were all stages of eyebrows and hair growth. The homecoming part for us is that there, everyone gets it.  Without words being spoken, a tip of the head or smile is enough to know...they know too much too. 

It hit me hard, as we waited, the incredible miles we've come. To be here at THIS exact second. 

At one point I realized I was actually sitting in the EXACT chair that I had sat in, the first time Wil was transported via ambulance from the SNF to clinic.  He could barely sit up and wasn’t breathing well.  He couldn't speak.  He had lost most gross motor control.  

Our doctor’s nurse reminded me, later, that on that first meeting, I told her straight away, “this isn’t him,” and described in detail the man they would someday see when he was well again.  My own version of a love song. She said to look at him now…she could see what I had been trying to relay to them 3 years ago. 

Wil has been doing well these days.

Side note:  When someone is post-cancer or post-anything, please know that “well” is a loaded answer.  “Well” often means, there is chronic pain, there are obstacles, there is the shadow of what was…but there is waking up daily, there is love, and moreover there is a growing ability to handle all the hard stuff of real life.  “Well” is all of the above.  And it’s a bummer to get into specifics about chronic issues when people ask, so you start to just say you’re “doing well.”   It sure is nice to have a few people who get that "well" is more about how you are handling things then about anything else.  It’s a thought that has greatly impacted my own life and career post-cancer.  Well is a moving target.

But Wil is well.  There continues to be chronic pain in his feet, from the past chemo that helped save him, and in his eye socket and head from the shingles this past fall.  If you ask him, “how are you feeling?”  He’ll say he is great without skipping a beat.  That is choice, and is who he is from head to toe.  But strangers have come up to him and asked if they could pray for him and his pain.  He is blown away.  He asks, “How could they know?”  His mouth smiles, his laugh is contagious, but his eyes are often tired.  The cane has helped, but his walk is slow.  For him, he’s happy to be alive every day.  For me, each day I am amazed, broken, and rebuilt by witnessing his pain, and spirit to carry on despite it. 

He is still chipping away at classes.  He’s taking courses as he’s able and working towards some IT certificates in things I barely understand.  I dare say, we talk about what life might look like in 2 years.  And it feels good.  I am happy to be working more than fulltime, which means he can take the time to be in school without working right now.  He fought that plan, and me, because of feelings that he should be contributing more, but lately has become more OK with focusing on school and doing well.  There will come a day when he works.  Or a day that he carries more of the load.  Right now, school is enough, and I am happy to be able to support him in doing it.  And the dogs are happy too about having him around!

 

I look at him and it’s almost more than I can bear--the love that has evolved and grown is like no other.  My heart beats fast these days, like those first few years together, but the cadence is sweetly tempered with the comprehension of life’s fragility.   

And me…for three years I have said “life is too short to use the econ button” on my car.  YESSSSS, it saves a little gas, but my Honda accelerates at a moderate pace when it's engaged and I have places to be!  The fact that I have been using it lately…well, it says a lot about where I am with things.  And the pace of life. Slower. Steady. 

 

I don’t need to rush this part.  And it’s OK to slow down and use my energy more efficiently so I can get as many miles out of each tank.  So that, my friends, is what I am doing. 

In just a few weeks I will start a 50 hour class towards a certification I have wanted for years, and finally have the mental capacity to do.  I saved my pennies and cashed them in on me.  It may take a few years to fully complete, but I’m chipping away at little goals of my own too.  I’m cooking all the time, which is centering.  I’m sleeping.  I’m good at just being home.  And I’m well…the kind that encompasses it all the feels.

We left clinic with good news this week.  His counts are steady.  There is nothing remarkable going on.  He will have the standard work up at his 3^rd anniversary on October.  That's 3 more Texas Bluebonnet springs than we thought we might have together.  Until then? Just the regular doctor, as needed. 

We walked away from BMT, with his only stated prescription from his oncologist,  to “just take care of your wife.” 

 

And I think...I think I will let him do just that.

Much Love.

(Pictures from our now annual Bluebonnet tour. Ennis, TX)

 

 

 

 

Evaporate

Jenny here.   We are at -3 days today until Wil's new immune system birthday on August 20, 2014. It's a rainy day, but I am excited to be cuddled up in Wil's room, Redbox movies and popcorn are waiting for me after I finish this blog!  I am so incredibly thankful to have this day of rest in my safe little BMT bubble.

It's been an up and down week.  Not medically speaking...that is well maintained...but more so emotionally.  

The chemo he is under going is strong, erase your bone marrow, stuff.  We are doing daily updates on the FB page, but in a nutshell, so far the side effects are minimal. This is "as expected" because the GI upsets (nausea, vomiting, diarhea, mouth sores, etc) are a cumulative result. What that means for Wil is that this coming week, 7-10 days post chemo, is when he will feel the worst effects.  Today concluded chemo and tomorrow is a treatment rest day.  In the meantime, although fatigued, he is active on the BMT floor, taking care of himself, walking, going to the gym, talking Dragon Ball Z to the clerk, entertaining the nurses with YouTube BatDad vidoes, and trying to eat well.  Tuesday, day -1, will conclude his pre-transplant treatments with one dose of total body irradiation.  

The day of admit was stressful.  Wil had been stressed and too quiet the few days beforehand. He couldn't hide his stress on his face or in his body.  He was worried, I was worried.  Worry was the word of the day.  His outpatient appointments that morning included genetics cousneling, blood draw, and his trifusion port placement in his chest (which ended up being delayed 3 hours, adding to the uneasiness).

I am still trying to balance work and counting on the fact I will need to use more PTO in upcoming weeks, so I had not taken off the whole day.  In retrospect, with all the emotions, I wish I had been off, but the money still needs to come in and Wil felt better with that in mind.  it just made for a hectic day.  I cried the whole way to my office after I left him.  He is in amazing hands.  Nothing big was happening.  Driving away alone never gets easy though.

So, to be honest, we were both on edge the morning of admit.  Wil and I rarely get into arguments, but like any couple, nerves get stepped on and words don't always come out in a loving fashion the first time around under stressful conditions.  I guess I say this to let you all know that 1.) We love each other and have an great marraige, but that 2.) Having cancer doesn't make you perfect or enlightned in your relationship all the time, and 3.) There are very few things in life that can't be re-done, tried again, talked out, forgiven, accepted...especially if you are open.

But it was one of those mornings when our feelings were spilling over and our thoughts were racing.  There were a few triggers for both us and, even though we knew we were not in a place of peace, understanding, and good timing for a heart to heart, we just didn't care!  And we broke.

Evaporation:  the process of a liquid or solid changing into a vapor by heat.  A cycle by which the earth's limited water supply is recycled through stages of transformation and renewal by way of molecular energy transfers.

As we drove around and around the crowded parking lot, looking for a space to park, the energy in our car was desperate.  As if a million thought molecules were bumping around, our feelings were colliding, expending energy.  We knew it, but the bubbling of the pot was set to boil.  Wil was getting ready to be admitted for so many unknowns, for a possible new life, but at what cost?  I was getting ready to check in my most loved and cherished human for an entire month of life saving, yet excruciating  treatment.  All we both wanted to do was escape, turn around, evaporate into the atmoshophere.

Condensation:  the process of vapor being cooled and changing back into liquid and forming clouds

Admit day was tough.  But the days following it have been soulful, playful, easy, and lovely with each other.  In some part, just getting going on the pre-ransplant process has made it finally real and given the opportunity for us to deal with the true underlying feelings of what all this means. 

We would not make it through this, however, without the nurses, doctors, and techs on the BMT unit.  Up here in the clouds, on the highest patient floor of the hospital, we have settled into this new part--a welcomed phase after feeling evaporated emotionally when we got here.  Somehow, things have cooled and condensed...we are focused and OK. 

Time and time again the staff up here saves us.  I try to tell them as often as I can how much they mean to us, how their few words or a smile are like little bursts of energy that ease us down this path.  As a therapist, clients sometimes tell me some of the same things I know feel towards these folks. Now...I get it at such a personally painful level that I am forever changed and forever grateful.  I have been on both sides now.   

There is no where we feel more affirmed than in the confines of these walls.  Not because we are not loved outside of the hospital and by our important safety net of people and cheerleaders.  No, it's just that there is a differnt level of understanding when you interact with BMT oncology staff and patients.  Unspoken understanding that is real.  No explanations needed. And in the moments I am under a pile of guilt for not being more, doing more, it's these special folks who tell me I'm ok...more than ok...and that Wil is loved...and that we aren't alone...and that they can see we really have something special between us...it's not that it means more from them, but it has some sort of sweet validation in it I can't get anywhere else.  They have seen it all, they have been with us through it all...every step, whether it was Dark December or now...they have been our witnesses.  

Precipitation:  the process by which there is so much condensed water that the air can no longer hold it, and water falls to the earth

We are moved to tears often these days, as expected!  My soul, however, is filled up and amazed when there are moments I see a glimpse of the staff's own parallel process, see their tears as they recount how scary and hard things were at first, feel the positive regard they have for us as people, and the prayerful hope they have for Wil.  They are just so genuine.  

I felt like a basket case on admit day and emotionally unstable...things were heating up...and then I hear from the ones who have spent nearly 90 admit days with us that we are more than OK.  That this HAS been crazy for us and them too.  That Wil's turn around is amazing.  And then I join in and feel the precipitation in my own eyes.  

This won't be our last cancer "water cycle."  But we are enjoying the warm stream of emotional H2O, letting it pool around us, soak deep into the ground of us, before transplant.  Most of us walk around thinking about the limited-ness of this life.  Water is limited.  Energy is limited.  I am limited.  But the process of life and love is actually cyclical. Evaporation is part of life.  But the rains will come again.  They are, in fact, already in process at the moment I no longer see the water. I hope I can keep that close to my heart the next time around.

Much love.

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. 

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.

Kept

Jenny here. 

Today Wil and I celebrate our 14th wedding anniversary. 

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

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

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

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

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

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

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

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

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

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

The True Love by David Whyte

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

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

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

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

Exposed

Jenny here.

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

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

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

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

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

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

Exposed.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

LJB

Day 13.

Cannot believe it has been 13 days.  You wouldn't think time would fly so fast being in one place for so long, but it does.  Even when you are doing nothing in that place.  Oh well, I will continue my focus in fighting this and keeping my thoughts & prayers strong (and trust me it gets tough to do).  BTW, I want to thank you all for your positivity, prayers, vibes, words and visits.  I really do feel it all coming in.

I wasn't sure how I wanted to start this blog, but I guess like that previous paragraph (heh).  I wanted to type it up yesterday, but after a great visit from my wife, Lindy and A.J., my body and my emotions, I guess, were overwhelmed (no fault on them). I ended falling out at around 9pm, earliest ever, and I feel better now.    

For those of you who have not seen this tattoo, it is in dedication and memory of a good friend who lost her battle to Esophageal Cancer I believe 5 or so years ago.  She was 42.  I had only known her a few years, but she was one of those people that when you met her, you didn't have to know one more thing about her (or at least I didn't) because now she was your friend. You loved her or you hated her.  This lady carried such a strong attitude (great attitude), very similar to my wife and some of the other ladies in my life.  These are women when they say "I got you", they do!  I think I named her my big sister.  Like my two bilological sisters, she was my cheerleader.  She noticed things that I do and would wonder out loud to me why have I not incorporated my talents into a business or something.  I'm sure she would be fussing at me even now.  In fact I think I feel her eyes beaming down on me as I am typing.  She was really amazing.  

When she was battling the cancer, I didn't have to, but I saw her fairly often.  I even asked Jen if it was cool if I went to see her without her.  I know it sounded silly, but that is how I am.  It was great to see her.  She was in good spirits, we had a great time, talking, playing games and looking at LOLCATS (my first time introduced to that).  Being a person who also likes to observe and learn I tried to take in all that she was going through without bombarding her with questions, and of course it was a lot.  Now I know, I only knew maybe 20% of what she was going through.

Before she died, Jenny and Heather researched and got tattoos in honor of her spirit in life.  At her memorial service, Cynthia and I decided to follow suit and get them too. The ladies all got theirs on their right instep and me on my shoulder. In kanji symbol it means "Tenacity".  That was Lisa Jue Bishop.  She never new the definition of backing down, giving up, or stopping. For herself or anything or anyone she loved.  And I feel that even though she lost to this demon, she was giving off some more good shots and cussing it out as she fell.  

I now hold this as my crest, my shield.  In honor of LJB and off of those (friends and family) who faught this fight.  I will win this.  I have too many survivors around me and one amazing guardian angel.

Until next time.........

Leukemia, Lymphoma or Bust?

They gathered all the pathology reports from the past and after a full day of study they have final diagnosis and stage.

Acute Lymphoblastic Leukemia!

That's right.  It is the same diagnosis.  It is just that there is light spreading in the bone marrow.  This changes nothing on the treatment plan.  Their approach is a pediatric protocol, mainly because I am as young as I am, which makes my remission rate at 80% (90% for an actual child).  I will be on a 9 to 12 month regime with my first month being completely in house and the most agressive.  I will then be in and out of the hospital for the next 9 to 12 months and not able to work or go to school. Actually life will be changing in so many ways. 

The chemo began that night (Tuesday, 11/19) with 2 of the 5 chemo regimes entering via I.V. (VinChristine & Doxorubilin). They didn't take long to get in the system and man did they rush through my body quick.  One of them were red and,well, an hour later I expelled some red.  I will count that.  I didn't notice anything in terms of side effects although while injecting the chemo they also injected anti-nausea medication.  

Day 2 of treatment I though was going to be quiet because I thought my next 2 chemo does were going to be this friday.  Well no.  One of them was to be on this day (Wednesday, 11/20).  This chemo injection was preceeded with a spinal tap done down in radiology.  The tap went well and the new chemo went in fine, straight into the spine.  This was chemo 3 of the 5 (IT Cytarabine) and I will only have that one once this round (per month).  This first 2 will repeat every Tuesday for the next 4 weeks.

Today (Thursday, 11/21) was my actual quiet day.  Not that I want quiet days, but after some of the things that happend today I kind of needed it.  I experienced my first major side effect, but in a somewhat small form.  I experienced a major heave, but prevented a spew (HEH......Sorry).  I did prevent it with some deep breathing.  I think the lack or change of the taste buds help make the situation happen.  I was very nervous for dinner because after that episode because my head was swimming and my stomach was on stand by.  I ended requesting some anti-nausea medication and proceeded to eat, but very, very slowly.

Tomorrow I will be receiving my 4th chemo dose (4 of 5) this is a new regime (Pegaspargase) and will only be injected once during this cycle via I.V.  

I am pretty anxious, nervous or whatever, but I have to flat out accept what comes to me and act accordingly.  Bucket next to the bed tonight.

Well that pretty much catches us up on this.  The next posts may be a bit more gapped out.  So just continue to look for email notifcations, facebook posts, or just bookmark the site.

Telling On Myself

So during this quiet period, my mind wouldn't shut down hardly.  It actually hasn't shut down since I was first admitted at Las Colinas.  I was full of questions.  If you walked in that door I talked your ear off (unless I was actually asleep).  Most of you know this is not usually me, but I guess some things come out in certain situations.  One other thing that has happened was something that wasn't too surprising to Jen and absolutely tickled my mom.  I now have a spreadsheet, keeping track of all of my vital signs (ALL OF THEM).  BP, Oxygen, Weight, Blood Sugar, all the way to Fluid Flow.  I initially did this because Jen would ask me just about my BP when they checked almost every 4 hours.  Now, being the person who likes to stay updated and needs some order, I have amplified it.  

I am also doing some things that, again no surprise to Jen, some would shake their head at and maybe even laugh (my mom did again). I try not to be a difficult person, but when you tell me that you are about to so something, even if it is around a certain time, I will hold you to that.  I can be pretty rigid on this and I have come to realize this years ago (With the help of Jen).  So, like the spreadsheet, it was amplified.  The best situation was on Saturday night.  I get 2 groups of people per day one nurse and tech per 12 hour shift.  When I first got here they asked me if there is a time period that I would like to sleep and not be disturbed.  I told them from midnight to 6am.  This was only honored once.  Techs started coming in at 5am.  I was then like ok, that's fine.  I asked them if I can shift it to 11pm to 5am and they said no problem, then Saturday night happened.  

So this tech, whom I met for the first time here at UTSW tells me about what he usually has to do, which was what all the techs did and told me that it will happen in about 4 hour intervals 8, 12 and 4.  Also if I wakeup in the middle of the night, say around 3 I should go ahead and contact them and they will come in and do my vitals right away.  I was like fine.  I wasn't going to waste my energy trying to get a system going again.  So this time I decide to set an alarm so I can be awake before he comes in and wakes me.  I know.........I know, but that is because, I'm Wil.  The alarm goes off and I noticed 20 minutes later, he does not show.  So, I hit the nurses button and when they answer I said, "Vital Time?".  They said, "What was that, Mr. Clark?".  I said "...well the tech told me that he would be in here around 4am to take my vitals for the morning and he is not here.".  He was running behind and will get there soon.  He finally makes it in apologizing, does the tasks and then leaves.  Took me a while to get back to sleep, but I eventually did.  I decided not to make anymore stinks on this and let it go.

Now, I just sleep when I can, they come in and if they can wake me, they can do the task needed to be done.   I actually have not really resistant.  Really!!  

So, that is some of my crazy town ways that came about during the early days here.  Lawd have mercy.  Every time Jen comes in she asks the staff if I have been behaving. (They normally say yes)

I'm so sowry people.............I will get better.

Busy, Busy, Busy!

Alright!  You have survuved my initial installment to this blog.  Lots to say there and I could have elaborated more, but I think that was way more than enough.  Now on to, I will call, the 3rd Phase.

This is not a real phase in terms of the cancer process, but just in this adventure we are experienceing here.  Phase One (March to August 2013), Big Hit to No Confirmation to Follow Up.  Phase Two (August to Late October), Larger Mass to Diagnosis.  Phase Three (November) I crept into some jumping to the actual diagnosis and hospital admission.  This phase will be in several posts and will be about as they happen, but not right now as we are still catching up.

So, we have finally got a diagnosis for this mass, Acute Lymphoblastic Leukemia (Non-Hodgkins B-Type).  I don't remember all of what it is about, but you can google it or something.  It's the most common type of childhood leukemia and treatable but rarest in adults and treatable but aggressive and likes to stick around. I have to admit the Leukemia part really threw me off because I believe it meant a good deal of spreading, but for now we still show no signs of that.  So after being admitted to Las Colinas Medical Center, Irving, TX, on November 11, 2013 I started IV steroids-- purpose was to get the mass smaller and my legs neuro symptoms under control. And it worked very quickly.  It was the first time in a very long time I felt no pain in my back or along the ribcage attached to the T6 vertebrae.  The next day (very early in the morning) this figure appears in my room calling my name.  It was my last oncologist to let me know that I will be going to UT-Southwestern St. Paul, but didn't tell me that this may be the last time I will see him.  I just took it as it is no longer in his and the spine surgeon's hands.  Not that I think about it was like when Obi-Wan appeared before Luke and told him he was to go to Degobah and train under Yoda.  Dork Side - Embrace It!  I felt in a haze like Luke (except Luke experienced more trauma).  

Anyways!

Finally was transported to UTSW St. Paul on Wednesday November 13 to the Bone Marrow Transplant Unit and they got me started right away on tests.  The next three days were very, very busy!  The whole month of November was moving faster than previous months, but this time it was in high gear.  Their main purpose was to do a final confirmation of the diagnosis and stage it.  So I went through bone marrow biopsy, full body MRI, one more full body CT and I was issued what is called a PICC line (kind of like a central line in your chest, but hanging off your arm straight to the heart:

Not sure how well you can see that.

So after all of that craziness and it lasted for hours each day (especially the 4 hour MRI - my poor lumbar), the docs all filed in and gave us some somewhat good news and bad news.  The somewhat good news was that all the tests especially the bone marrow biopsy showed very little to no signs of cancer.  Nothing in my brain (well, yeah), my liver, kidneys, aorta, etc. were fine from the other scans.  The only thing they did find was that the mass on my T6 has all but completely disappeared.  The steroids did their job for the most part.  So again, no more pain especially there.  With the report of no spreading the A.L.L. diagnosis was for now debunked (at least the Leukemia part).  So now they will work get all of the past pathology reports, scans, everything I had done and thoroughly check to diagnosis this.  This made for a long weekend, but at least I was able to rest again.  

Later...........