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)

 

 

 

 

Blood, Sweat, and Tears

Jenny here.  If you have been following FB daily updates some of this first part will be familiar but, for those only keeping up with us via blog, I will summarize some to catch you up.

The pharmacist met with us today to go over medications and precautions for post discharge.  During that hour meeting he said to think of Wil as a 14 day infant, because that is how old his immune system is today!  And I thought it was really smart.  Small simple feedings, avoid unnecessary exposure, keep on a schedule with naps, exercise, and medical care  (ugh, the meds list...and some are uber important, lots of directions and instructions.  And a lot of symptom education about GvHD).  He said he'd never choose to take a newborn to Walmart or out in the hot sun on a Saturday so neither should Wil!  But we are not out of the hospital just yet...more on that in a bit.

Within an hour of posting last week's blog, Wil started to have shakes, chills, and greater fatigue.  They had told us spiking a fever is often part of this process and a sign that new cells are trying to unlock their new homes and settle in (engraft).  The high fever didn't come that night though.  I can best describe this week as Wil feeling like he has the flu, still nauseated/vomiting, body aches, extreme fatigue, lack of appetite, etc.  Crummy feeliing.  All the time.  He says "this is just hard."  No complaints, but he's right.  It's hard to watch as well.  Every little calorie he does keep down goes to the transplant process, which leaves him no energy for daily living.  Yet he has only missed one day of walking and gym.  Even if he has to push his pole down the hall slowly and take a break, he gets up several times a day and gets it done.  I am so proud of him!  He is now down about 15lbs since he admitted, just not the way you want to lose it.

The next few days included thrush, a positive test for CMV (not active,so just being watched), had chest pain (ruled esophogitis after a clear EKG), and lots and lots of blood.  His numbers were pretty consistent most of the week and not really rising as fast as we, of course, had hoped...but all within "expected" per his team.  Not having enough (or any sometimes) of a type of blood cell really affects a person.  When you have almost no platelets, stubbing your toe is an emergency, you aren't allowed to shave your head or cut your nails, etc because any wounds or cuts won't scab and could bleed out.  When you are low on hemoglobin (a molecule in red blood cells) that carry oxygen in your body, you are short of breath constantly, even just getting up and taking a shower or brushing your teeth.  And when you have 0 neutrophils (which make up the majority of white cells, you have no fighters in your body to ward off infections of any kind and are constantly at risk).

Sidenote:  I would love to take some of this in stride and to "not stress."  I am proud of how I am doing quite honestly.  I know my anxiety does not help the situation, but minimizing as many risks as possible is just part of this journey.  It's so scary coming up on flu season.  I have, what I assme to be, a healthy and normal immune system.  Which means I can be exposed to things and not get sick, yet take home the flu, a cold, or anything else and not even know it...and infect my hubby who has no immune system AND no longer any immunities (after this is all said and done he will need all new vaccines, the old ones were wiped out before transplant).  I pray everytime I leave the house.  Everytime I go to the store.  I see germs now where I never took a second look, and try to minimize contact.  Anyone else that may come into contact with Wil (first person or through me) please take precautions too.  To those we love, wash your hands (and learn the proper way!)  Take your vitmamins, eat well, exercise, sleep, and get your flu vaccine (I know this one causes controversy, but Wil can't have a vaccine to protect him, so it may be a year to consider one yourself...I often don't either, but this year I will be!).

Over the weekend is when Wil finially caught the fever...and we are not talking disco!  He slept with icepacks, had the normal x-rays and cultures done to rule out infection, and felt his lowest.  His blood pressure was on the low side of normal, yet his pulse was 125-135 while resting.  This too they say is "normal."  He flirted with fever for a few days off and on.  His heart rate is now about 117 resting and temp is normal.

Monday we had the news we had been waiting for...his counts were rising and they had contiuned to rise until today.  Today they were all lower.  All he can think about is coming home right now.  We were set for tomorrow (Thursday), but it all hangs in the balance right now.  As a write this, he is getting his first bag of blood since the weekend.  While the team says this happens sometimes, for Wil it was hard to hear his discharge date may be delayed.  He can barely keep his eyes open, but when he does, he just looks sad.  He wants his own bed and uninterrupted sleep.  But all is not lost, if his numbers look better tomorrow he may still get clearance to come home.  Prayers and well wishes please!

For me, last week I was not yet ready for him to be home.  Hospitals are anything but germ free, but there is still so much support here for both of us that will be different once we are home.  I am happy to say I took care of myself this week and had a maid come in yesterday and a lawn service come today.  While an old house will never be perfect, she dusted and santized all flooring, bathrooms and kitchen, and wiped down doors, switches, and cupboards with natural non-toxic cleaners.  Feeling ever so weird about my first hired help, I worked on some other areas for a few hours too so we could get more done.  5 hours later the maid left, both of us having worked up a sweat.  I still have a few items on my list to do (fridge, replace A/C filter, buy a few new pillows, make a sanitizing spray, and baking soda/essential oil cleaning of the furniture).  I was tired, but had a hopeful sense of the transition home.  Even more happy with the grass getting cut early this morning!  We are in much better shape for his arrival.  

I wish I would have broke down and got the help sooner and just spent the money.  I carried with me so much guilt in reaching out.  How do you ratonalize spending money that could be spent another way?  Shouldn't I be able to do it myself? Having taken the plunge, should we get the chance to be on the other side of this cancer thing, the first thing I will offer a caregiver is this advice:  Get some hired help.  Loved ones will want to help, but scheduling will be a nightmare and everyone has lives they are maintaining.  And then I'll find and pay for some sort of service for them or take up a fund.  Over and over we have been blessed by charity and each has helped us in some important ways.  Often I have wanted to hire someone, then never been able to bring myself to use that money for anything other than a medical expense.  The past two days have changed my life and my heart on that matter.  When you are in the fight of your life, having help like an occasional maid or monthly lawn service, is not a luxury item like I once thought it to be.  I am providing, on a daily basis, a service no one else can--a wife caring for her husband while his body breaks down, is built up, put through the wringer, battles with the emotional cost to it all, and yet only requests one thing--ME.  I can hire a once a month maid and figure out bills later.  I can't get back this time with him, I can't know how long that time is, and I can't replicate myself.  

We have this one chance, every moment, every day, to make our time count.  I will be busy and I know I won't become a princess because I enjoy taking care of him and our home.  But having a few extra hours, even if just monthly, to reduce my stress load and be able to be more present with him because of it?  It brings me to my knees in tears.  The grateful, soulful kind.

And so my sanity has been restored a wee bit.  

And I slept without taking a Benadryl for the first time in a week.  And cooked an actual meal for myself.  And cuddled with the dogs.  And I had Thai food with a friend. And soaked in the clean tub and cried happy relief tears.  And it came, thanks to a couple of people who threw some cash in to get it done (whether you knew it or not!).  Our credit will not be the same for years.  That ship has sailed already (its a lie that medical bills won't go to collection if you just pay a little each month...they still can).  I just can't care more than the care load I am hauling around already.  I'm doing a damn good job.  If Wil survives, we have years to make amends with creditors.  Just one more thing we can look forward to facing together.  And if he doesn't, well, then I spent my days with him in meaningful ways and worried about the stupid grass.  Either way, I've not wasted the moments I've been granted with this man.  No regrets.

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.

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.

Lean

Jenny here. 

I am sorry to be absent for awhile. If you are a dog enthusiast you know how difficult it can be to lose a little one. I may be overly attached to mine...I guess it's all how you look at it. Regardless, Bella's tragic, and not in my time frame, passing just came at what felt like the worst time. 

I hope people know I am mostly optimistic by nature.  But the stress and ups and downs that is my dear hubby's treatment, keep me dangerously close to the floor most days. I just had no idea that this floor had a basement and I would fall through to it.  

Our sweet Tyson dog was a mess the first few days.  Accidents (which never happen for him), whimpering in his sleep, deep soulful breaths into her blanket.  In some ways he is saving me again from deep despair.  My crying makes him so worried.  And so we play extra long, hug extra tight. He now has a makeshift bed next to ours and is keeping the boundary because he enjoys being close, even if it's not in our bed.  The house is quiet without his sergeant to give bark orders. 

I have now been the crazy lady breaking down in the pet store while buying dog food, strangers gathering around to hug me. I'm now that spectacle in the Sonic parking lot, sharing a corn dog, bite by bite, with my puppy who was left behind. I am the one nearly collapsing from the weight of tears when I come in the door at night and it hits me again that she is gone or I automatically reach for her when waking up.  I am the one trying to figure out how to feel all the feelings: love, grief, betrayal, fear, hope...and actually be ok with them and the time it takes to deal with them.

Bella always knew how to lean into emotions.  Never shy away.  A friend said to me this week, she was a furry social worker.  Truer words I cannot find for her.  My niece said she wasn't just an ordinary dog.  Silly me had somehow thought of her as my back up plan.  It's morbid, but she had a greater statistical chance of living the next five years than Wil. I thought she would be there the next five no matter what happened.  What I carry with me is her spirit:  love without abandon, friendly spunk, ask for what you need, and stay with whatever you feel until it transforms.

UTSW, in all their wonderful ness, once again wrapped their literal arms around us.  I had more prayers and hugs last weekend than I knew what to do with.  The nurses and even the weekend attending oncologist, cried with us and loved us and took care of more than just Wil's physical needs. 

I think Tyson saw her one night.  He visually traced something moving slowly across the room. He didn't bark.  He was at rest but alert. 

This blog is really not just about Bella.  It's really about the deep sorrow that comes from losing a joy.  It is about the journey we now make from the basement back to higher ground.  Life is so short. You don't get over loss, but if the life within you is strong, you manage to move through it somehow.  I don't think this hole gets filled in.  Just like the holes left from the sorrow we've gone through the last six months. You can't be the same as you were before.  You just grow around the places left open. 

Wil is doing well.  Tired.  Counts have recovered well.  He is getting a weekend, 11th day of the cycle, chemo as I write. We have enjoyed a few days with his old roomie from college who was a surprise to him all the way from Wisconsin. One foot in front the other. There are some days, that in and of itself, is truly the miracle.  

Love Sorrow by Mary Oliver

"Love sorrow. She is yours now, and you must
take care of what has been
given. Brush her hair, help her
into her little coat, hold her hand,
especially when crossing a street. For, think,

what if you should lose her? Then you would be
sorrow yourself; her drawn face, her sleeplessness
would be yours. Take care, touch
her forehead that she feel herself not so

utterly alone. And smile, that she does not
altogether forget the world before the lesson.
Have patience in abundance. And do not
ever lie or ever leave her even for a moment

by herself, which is to say, possibly, again,
abandoned. She is strange, mute, difficult,
sometimes unmanageable but, remember, she is a child.
And amazing things can happen. And you may see,

as the two of you go
walking together in the morning light, how
little by little she relaxes; she looks about her;
she begins to grow.”

The Drive of Intimacy

"Does this even feel like your life?"

It's a short, yet powerful, question we get asked a lot.  I can guess that means, does this journey feel real? Or, has our sense of the twists and hard lefts caught up to our new life reality? Both are probably no and sometimes yes.  Our travel down this road is nothing we could have planned for or gotten ready for in advance, other than the fact we are blessed to have a great marriage that we have made a priority from day one.

At times we feel like "we've got the hang of this now."  Like we know this route.  And then life continues to remind us that each day is distinctly different from the last and will surprise us with many peaks and valleys alike.  A truth for all of us, just made more clear when your vitals are checked throughout the days and weeks, measuring and reminding you that life is mostly uncertain and for all of us will end in death.  Some, statistically, sooner than others.

The past 16 days, since Wil was last admitted and then was back in the ER, have flown by.  Being at home always seems to go faster than the weeks at the hospital, despite the fact that they outnumber the inpatient days three to one if we are lucky.  Usually the days melt away quickly, as we settle into the already well worn indentations of life, our spots on the couch, our sides of the bed, enjoying our typical meals...our flow of life as we know it through the cozy, intimate confines of our home together.  My favorite place.  Even clinic appointments have started to feel like a normal flow of home life.

Side Note:  My side of the bed is never used anymore.  There is a middle and there is his side.  I sleep in only one of those two places now.  There is not enough time in this life to lay on my side in the moments I have him.

This last round of chemotherapy reminded us that the casual knowns, those usual grooves we'd like to not climb out of, can ever be taken for granted.  Each round has its own personality.  Round 2B was significantly different for Wil, in terms of recovery, than the previous rounds.  We are told he is "normal," a word we have longed to hear, yet with those few little letters, we know what that probably means from here on out...it's likely it will continue to get harder. He will not bounce back as quickly.

"But it's going good, right?"

It's going according to the plan...each round destroys more of those cancer cells in his bone marrow.  Which means each round kills more of the good cells in his bone marrow too.  We are on the right track.  His body is a little more depleted each week and we both can tell.  He now needs frequent blood transfusions, several entire days spent at the clinic in between the inpatient chemo weeks, to try to keep his numbers from completely bottoming out and help his body regenerate.  It amazes me, this whole process, of tearing down and building up.  But we are in good company and always reminded, by the numerous long term relationships you acquire by seeing the same faces of providers as well as patients, that this journey is both long and intimate.  A marathon of vulnerability.

If you ask Wil, he will tell you he is great.  He will ask for nothing.  Last week, after a a full clinic day, he turned to me and said, "I'm so glad I have my voice back."  I love that about him.  After an entire 9 hour "work day" of sitting in a chair and having 3 units of blood drip you back to life, his statement wasn't "I'm tired" or  even "This isn't fair."  But I also worry that everyone around thinks things are going along without a hitch.  That things are naively hopeful--that recovery is sure bet.  Our faces are still marred with mud and tears.  I realize people go back to their lives.  And this right now IS our entire life.  Day in an day out, we manage and adapt.

Maybe it's the retrospect of how crazy it was in the first leg for him.  Now he smiles a lot.  He is more social at clinic, surrounded by the people who you know, without a word, just get it in a way others can't.  He is on Facebook posting about math, science, and politics.  Politely arguing and playfully conversing.  I am the one who gets to see the exhaustion, the bone deep painful exhaustion.  He aches from the inside out (which they say is normal as his bone marrow tries to fight).  I see the blood spots on his pillow from gum bleeds when his platelets are almost completely gone.  I see him break a sweat and breathe hard unloading the dishwasher when he is neutropenic.  To know Wil is to know he will rarely complain about the constant pain in his feet, even though you see him struggling.  I sometimes find myself advocating for him at the doctor appointments to make sure there is honesty about the fact that things aren't as easy anymore.  

I find myself feeling on edge, wanting to tell those he loves, who are absent, to wake up.  Life is short.  We cry together over little joys and the little losses along the way.  We miss people.  We grieve dying relationships along with the grief we feel about everything else.  But we have to keep going.

Today his doctor told us his chance of survival is 35% with this protocol.  Add in a bone marrow transplant and it goes up to 55%.  If we can find a match.  There are all sorts of feelings of vulnerability.  In so many ways we are dependent on others for blood, platelets, and now marrow.  it's not a matter of just trusting doctors and meds.  We have to wait and hope for another being to give of themselves.  If he had a family match, now would be the time for a transplant. 35% is not 0%.  But it's enough to leave me breathless.

Cancer has made a path to the greatest intimacy I have ever known with myself, Wil, family, community, and life itself.  I think the greatest challenge of caregiving is that to preserve the peace and stillness for our loved one, we often carry a different heavy load.  When this blog first started I wondered why there were not more blogs from caregivers.  I can find a patient blog around every corner.  As a caregiver, I love getting that perspective.  I often crave the companionship of other caregivers though.  I can't explain it, but I can feel the why of it, why there are not more caregiver blogs.  We are tired and heavy hearted a lot of the time.  I am often scolded by others who say, "just ask."  Here's the thing...please just offer.  Tell us what you are wanting to do, willing to do.  Just decide. We won't turn you away because we still need the support.  But we are too tired to ask.

This blog helps you all stay connected to us.   We are halfway through this middle stage, the second half of this will be harder.  But this blog, does not guarantee WE feel connected.  Don't just read this blog.  Leave a comment.  Love it or hate it.  We both just need your virtual arms around us.  Let him know you are thinking of him.  Tell us you are praying.  As we expose our life, all we really want back is your intimacy too.  Near or far.  No sugar coating.  Acceptance of the fact that this is hard and may have many different outcomes despite the fact we are filled with faith.  You don't need to know what to say.  Say anything at all. 

Travel with us.  Jump in the backseat with us if you dare.  Or if not with us, with whoever in your life is struggling with physical ailments.  Or addiction.  Or mental health.  Whatever the issue.  If nothing else comes from our lives being opened up to all of you in this battle, let it be this:  take the daily opportunities presented to you--be vulnerable enough to be along for the ride in a visible way to those you love.  Yes, people may die.  Wil might die.  You may hurt.  Scratch that.  You WILL hurt.  This is a moving, breathing life ride.  We realize the front seat passengers are quite the pair--HOPE driving, and MORTALITY to his right.  But we have seats galore in the back with us.

This vehicle has no luxury accommodation of avoidance.  It's real, it's raw...it's in the moment.  But to those of us who had no choice but to take a seat, we really enjoy the company of folks who continue to sit next to us, hold our hands, turn up the radio to shout sing, and let the wind flow through your hair as we face this greatest adventure.

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.
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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."

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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.