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. 

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.