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)

 

 

 

 

Taking Off/Landing

Jenny here.


On Monday, Halloween day, I was in a plane headed to Chicago for the week to work.  It felt epic, in that it was my first flight, first week, away from Wil since diagnosis.  And I was holding back tears already.


The day before we had marked 2 years since discharge from his stem cell stay (10/30/14).  Two years ago, after many times of thinking he would never leave that hospital alive, he stood up in that parking lot feeling the breeze on his face for the first time in almost 3 months.  But during the weekend, our celebration was cut short and we headed for what used to be a typical "date night," circa 2013-2014:  hours together at UTSW.  In the ER.


In October, when we received Wil's anniversary test results, we found out that, although the transplant wiped him of HIS chicken pox immunities, they are back.  From his donor cells.  This was actually OK news at the time.  Post transplant folks cannot get live vaccinations (ever again) and adults who contract chicken pox, let alone someone like Wil, are at high risk for complications.  So, we thought, SCORE!  One less scary thing to worry about down the road.


Fast forward to the Thursday, before I left for Chicago.  Wil, in the middle of midterms, was feeling off.  Headaches, watery eye, fatigued.  Friday, he noticed a few smallish bumps on his right eye lid and forehead, along with continuing headaches on just the right side.  Now, post transplant he has had lots of pimples as he often breaks out from his oil glands acting like they are teenagers again.  He chalked the headache and eye puffiness up to seasonal allergies.  But by Saturday, his eye was swollen, his eye painful now, and clusters of bumps appeared.  He called the on call oncologist and we headed into the ER.


Side note:  Whenever there is the unexpected I worry about two things:  GvHD, or worse yet, the return of this leukemia.  A moment. A text.  A phone call.  And I am suddenly transported back to the land of cancer via the Death Valley expressway.  I know that may sound so full of gloom, but this is life after and why it's hard to let down your guard all the way.  I realize my brain, like all of us, is negative tilt, looking for the scary in an effort to avoid anything lethal.  My brain wants me to survive.  And so, in these times, there are only 3 immediate choices:  fight, flight, or freeze.  Usually I go through all of them before I can ground myself again.  Post cancer fun times.


This didn't look like GvHD (been down that road!) and shingles?  On the face?  Google images provided some direction, but his just looked...different.  One look at it from the ER doctor and it was confirmed:  Shingles of the eye.  They ran tests, blood work, and he saw an ophthalmologist (since it can cause blindness)...all of which came out good.  He was sent him home with medicine and strict advice to stay away from other until he recovered.  What's funny is that he was prescribed the same freaking medicine he had been on for 18 months, as a protective measure, post transplant.  So strangely it felt too familiar--Hello old Valtrex friend...it's just you, me, shingles, and a lot of couch time. 

(ER Wil felt better than any day since...)

Side note about shingles:  If you are in good health, with a normal immune system, and have had chicken pox, you are not at risk to be around someone with shingles.  The shingles virus, if you have had chicken pox, is already a part of you!  But it you have not have chicken pox, are pregnant, or immunocompromised, stay away from someone with shingles until they are no longer contagious (oozed and crusted over, lovely!).  I was in no risk, but certainly others could be in one of those categories, so it was stay home for 1-2 weeks.  And the face?  Not the most likely place, as it's usually on one side of your torso.  Wil....never doing things the likely way!


So I shopped and prepped the apartment for Wil's quarantine.  I tried to think of Wil as my kitty. 


Food.  Check. 


Litter, I mean toilet paper.  Check. 


(Calming breaths) "He will be ok, for a few days, of me across the country"...Check???


The mere thought of getting on the plane was, emotionally, almost as hard has leaving him at the SNF that first day.  I told myself this is not the same thing AT ALL.  But that dang brain stem...was all about the anxiety.  Leaving him for the first time was already going to be hard enough, leaving him like that was so much harder.  Admittedly, we are connected at the hip most days, for the past three years.  He was trying to keep his spirits up, joking about keeping this "in focus" and any other eye joke he could think of at the time.  I knew though, he was being brave and this was a hard time for me to be away.


So, having cooked more food than he could possibly eat, having set up a few back up plans should things get too bad, I walked on to that plane, missing him already. 


He sent pics daily to update me (I will protect you from the horror of what his face has looked like...people say they can imagine, but honestly, I could not!  It is far more gruesome and painful than all those shingles medication commercials makes it out to be).  It was so hard to see the progression. Every day got worse. 

I managed a few beautiful days in the north though, saw some lovely souls from the past, and got to absorb the energy of the city the night they "flew the W" on game 7.  And was SO ready to be home with my favorite person in the whole big world who needed me.  He had put on a brave front, but looked so worn out when I returned.  He had survived on fruit snacks and crackers and canned chicken.  He barely left the bed, other than taking the dogs out. 

(Chicago)

(The pups stayed by him the whole week)

He's still in considerable pain.  He has near constant nerve pain that he describes as deep inside his eye socket.  He crusted and peeled early on.  He had pink spots everywhere those blisters had been and now they are starting to even out to his normal skin tone.  And he's sore.  Fatigued.  He still has headaches all day long.  But it's slowly getting better.  He has managed to drag himself to class, after he was no longer contagious, and even made it to vote (they were able to come out to the car to let him vote...yay accessibility!).  But man, this has been such a long few weeks for him and may continue a bit longer.  Fingers crossed the nerve pain it doesn't go  months. 

(He's showing his good side on Election Day. The sunglasses help disguise his eye area that has been raw and painful)

(This is 1000x better then it was!  He couldn't open the affected eye for 2 weeks and the whole right side was completely raw.  Now it's more the nerve pain that won't subside). 

Taking off.  Landing. 

All of these old-new experiences are so fresh and scary.  Not because I haven't done them before.  Not because we are afraid of the flight.  But because this new life is a destination unfamiliar.  Not as the new Jenny or Wil 2.0.  Not with the new circumstances that make up our daily life or the realizations of things that may be out of reach forever post cancer.  It's just we seem to have no map, other than just a grid piece or two, ahead to guide our steps.  In fact, often, we feel like our total distance we can plan out is as far away as the next oncology appointment.  The distance is starting to lengthen, but life is still lived a few months out.  And then...life takes us down some more unexpected ER visits...and back to a feeling, a sense of urgency and fear, that we know too well.


I'm not certain that will ever change.  Just as the feeling in my stomach, as the plane lifts off the ground, defying gravity, will always happen...the acceleration, rock and sway, that is but a normal part of takeoff...will happen.  The turbulence, bumps.  We will hold our breath, lean back into the headrest, engage our bodies in the defiance, and take off anyway. 


I guess that's what we've been doing this whole time anyway.


Much Love. 

Well Water

Jenny here. 

As I heard our combined footsteps down the long clinic corridor yesterday, the additional intermittent click of his cane in between, it struck me how different this walk was a year ago. 

As we walked through sitting areas on our way to his oncologist's waiting room, I realized I now pay more attention to the surroundings, even as I sometimes try not to look too far into my mind's wondering about each person I see there.  The gift:  I don't solely think about Wil's life and death each second now.  

If you want to see a truly diverse cross section of America, and a true community, visit a cancer center. Every face, age, health, ability. I was reminded that this disease doesn't discriminate and that when everything is stripped away...when you are melted down...we all just want the most simple things from this life. Period. And the hardest truth for most of us--there are no guarantees. 

I felt very present with the reality that, at this particular moment, we have been so unlucky and lucky all at the same time. Every hurdle, tear, worry, complication...we are still moving. And that's more than I can and will ever be able to understand...how some are on the other side of the same cancer coin from us, for no particular reason at all. 

Wil called "heads" 3 years ago and we're wobbling and landing. Luck of the call. Luck of the toss. Luck of all the factors in between. 

Wil celebrated his Day +731 on October 9, 2016.

We hit the road to see one of my sisters, and her fam, who recently moved to the Ozarks area of Missouri.  

Celebration mode. 

With or without tests and labs yet, we still marked the day with appreciation.  Two years in the making...every day, plus a leap day, accounted for in sweat, laughter, arguments, tears, and reverence for that spinning coin. 

We arrived in Missouri early a.m. on the 9th, dogs in tow, having officially toasted in the next year of this journey with Coke Zero, trip snacks, and miles of road. 

We enjoyed all the small town delights over the next few days:  church, hayride, bonfire, nature...time with limited cell phone reception...and Ozark well water.

I grew up on well water. Cold. Crisp. Straight from the red handled pump that connected to underground aquifers. Up from MN ground. No filter. Naturally occurring. Life sustaining. 

Being there in MO...Spending time with someone I have a deep shared past...playing with her little, our niece...the well water ran more than just ground deep...it was soul deep.  Soul quenching. 

We came back to Fort Worth last week and headed into all of Wil's anniversary tests, scans, blood work, PFT's, and all his baby immunizations (no live vaccinations ever again though).  He was very happy that no BMA was on order this time around. (In fact, if things continue to look well he may never need one again). 

I had been off work all week, enjoying much needed couch time with my little family, in between some private practice and the doctor appointments. Going to drive-in movies. Watching Sunday football. Finally putting up curtains...it was a great week because 99% of the time I don't get tired of this guy ;-)

This anniversary walk has been quiet this year by choice...maybe not Wil's, but certainly mine. Less exasperation. More normal. Normal. Yes. Just. Normal. 

Yesterday we made the rounds at UTSW.

With Wil's mash up of anniversary tests, scans, blood work, etc complete last week, today was about visiting our cancer wells and hoping to get more fresh, sustaining news.  

First we visited the BMT floor. Then clinic. 

Side note:  We love these people. Some we had not seen for 2 years. He's almost unrecognizable--upright, smiling. Hugs all around. 

This day. EVERY day. Is a shared story. A shared victory. With these people. And no one understands the absolute miracle of the coin toss, the wonder, the hard work...like these friends. Mutual positive regard, all around. 

The results were all in (other than the test to see what percentage he is of donor cells-- although based on the rest of his work up, it's unlikely that won't look great too), and...

All is WELL.  

Counts continue to improve and, even if they aren't all in completely "normal" ranges, they are good. He won't even see his oncologist until April 2017. Six months. 

It's still the days that count.  Still the people in it that are our spring. And we count them all. Today Day +741.  After a day yesterday that filled our souls to the brim. 

Well. He is well. The aquifer, deep. 

Much Love. 

Love Letters

Jenny here.

2 years ago today I watched Wil break down in tears at the news of his failure to graft. Last night I knew what today marked. 

Even so, as I opened my TimeHop, still in bed, the mix of news struck me for today: getting my Civic 3 years ago, celebrating Violet's birthday last year, and the link to my blog entry about the news of the graft. 

I don't often reread the blogs, honestly. Because they take me right back there and I remember, in almost real time, the overwhelming nature of it all. Sometimes, the Jenny of then, really makes the Jenny of now still cry. 

This life. What a wild ride. 

Contrast. 2 days ago shopping with Wil. His first new shoes since before cancer. His feet, so tender and swollen from med side effects and his neuropathy.  Still. The kind assistant manager, on the floor, helping him ease into new shoes. 

His smile says it all. 

Him. Still concerned about me and us. "They are expensive. I shouldn't get them."  Yes, Wil. You should. Yes. We aren't still living to NOT be living and getting new shoes. 

But 2 years ago he was equally concerned about everyone but him. Some things are just constants. 

http://fightthebigfight.blogspot.com/2014/09/worth.html?spref=fb&m=1

So I read the blog. I cry. I'm stunned. He is still here. I read it to him. A blog he had never heard because he also doesn't go back to those dark corners often. Most of them, he has never read. And as I read aloud, I remember how important writing was to me then. And how I just can't seem to sit and write now even though I'd love to do so. 

I guess this part of things seems more personal and private?  No, I'm not sure that is truth. I was never more vulnerable. What was different was I didn't have him 2 years ago. His body, beaten, bruised, he was barely there because he was held together by meds and blood products, too nauseated to eat, to tired to talk...

I wanted to tell him so many things then. Yet I knew he would feel more guilt and shame and regret if I told him how scared I was that he'd die. I. KNEW. He would take all my grief and desperation as his failure. Just like he did the graft.  I couldn't give him that to hold. 

This is the story of the caregiver. Pushing your feelings aside and saying "I'm

Here. I'm not backing down. I've got this.  And I've got you."  

As you disappear yourself. 

It's worth it. I'd never change it. I see myself differently. I embody a new woman who no longer needs as much. Who values real more than ever. Who doesn't apologize for being herself anymore. It has come at costs and pain. I won't let her down by shrinking into shoulds or relationships that aren't healthy. I love her more than that now. 

See the caregivers. Hold them when they say they are OK. Bother them when you feel your most uncomfortable. Because they are holding it all to hold the hand of their person. 

Today, this summer...2016. I'm

Not writing as much and can't. Instead, I'm living out our love story in real time. I'm living out my grief through growing pains of living this new life. 

Two years ago, those blog entries. They were my love letters to Wil. They were things I couldn't say out loud or in room 813. The things I knew I wanted him to hear, if he lived, but couldn't burden him with. And here we are. Day +712.  Today I read him that love letter. And we cried. And then ate eggs, bacon, toast, and drank an extra cup of coffee.  Unpacked a few more boxes. Walked the dogs. Paid bills. 

We wrote a living love letter, together this time, through tiny normals. 

We lived. 

Much love. 

the SWAY

Jenny here.  And its Day +681.  And it’s the 2^nd anniversary of Wil’s first stem cell transplant, that didn’t engraft.  It’s the strangest cocktail mix of feels; It’s a smooth glass of hope with a double splash of how-the-hell-did-we-make-it-this-far?  In some 50 days we will reach year two of the transplant that DID work.  I think back to that time…all those months that dragged on…Now the days seem to fly by.

Summer is nearly over and, man, have we been enjoying the electric bills, in our new smaller life, as Texas heated up to simmering 102-104 degrees a few weeks ago. I wish I could say that everything had a place and was in its place at the apartment…but…we are slowly chipping away.  We are installing shelves above doors for extra storage, still scanning and shredding hard copies of paperwork…still figuring out where things work best.  But it’s happening and we really feel settled, in the midst of some organized clutter.  The dogs are doing FABULOUS and seem to be more chill than they ever were in the house.  I attribute it to the fact they can lay in one spot and see/hear us at almost every corner of the place without lifting a head.  They get more time with Wil, on short little walks throughout the day, and they love the easiness of life on our little couch. 

I'm also loving that Wil can help with some things. He's even been more inclined to cook or help manage things around the house. And it's great that he can and that its at his pace. I know he worries about me working a lot...but he's still recovering and I feel settled knowing he's doing just that!

The summer has been busy too.  Wil finished his second class, post-transplant, and feels like he has a new degree plan in mind now.  He worked really hard and got an “A”!  I have been working like crazy, trying to get back up to speed at my private practice after hanging on for dear life for a few years.  I’m excited to finally have the time/mental capacity/want to update paperwork, set up an electronic management system, and even consider growing my practice in the coming year.  I truly have not had any desire or energy to consider such a task before this month.  And that, in and of itself, feels…normal-ish.

Yet the sway.  Normal-ish what?

I am not sure I fully feel awake in my own life.  For the first year of cancer, I felt lost on planet leukemia, but it became the new reality.  I figured it out and there was no choice but to keep walking and do a bang up job of it.  

Now I seem to sway. 

Between what was, what was after that, and what is now…or could be.

Wil is about the same.  Chronic pain and a heart of pure joy most days.  His mobility has been helped by the cane and he has embraced that assistance.  It helps him balance and avoid falls.  His new med cocktail for the pain management seems to be helping him manage better too.  Little improvements are such a big thing.

At his last doctor appointment, his white count had dropped below normal levels.  Now, most of his counts are still in the low average or slightly below normal ranges.  But his WBC had been WNL for quite some time.  The PA must have seen my face, and interjected with “the body can do weird things, no need to worry just yet.”

Sway.  

Familiar waves of feelings toss me around.  For all the normal-ish moments we’ve entertained this summer, it’s a punch to the gut to feel an instantaneous fear I'm that is so familiar.  His oncologist is not worried, or not enough, to schedule any additional tests or appointments.  So I know that’s a great sign.  But my little outlier, who was atypical before diagnosis…it’s also hard not to move back into a space of worry.  Every bump.  Every slight change.

Side note:  As much as life is slow and easy right now, we still have to check him for GvHD every day.  And GvHD at this point in time, is different than in the beginning months after transplant.  If you have had acute GvHD (as Wil did) you are more likely to develop chronic.  It’s the thickening and color change of skin.  It’s joint pain and stiffness.  It’s dry eyes.  Fatigue.  Or changes in breathing.  These, among other subtle symptoms.  So yes, go out and live.  Be free.  But not too free.  Remember that every day you have to monitor yourself.  And keep a careful eye on any changes.  It’s the sway, the two sides you bounce between daily, in life post cancer.  Cancer still influences our life at every turn. Even when life is normal-ish.

October will be his second anniversary.

I have a co-worker who’s little girl had a stem cell transplant and just celebrated her 5^th.  I almost laughed  at myself in even spitting out the words, “Do you feel relieved?”

No.  There is no relief in worry, just bigger expanses, larger waves, more gentle sways.  There is no eliminating the experiences or scars we are left, just a gradual, and greater tolerating of life as it is, and how it will probably continue to be. 

So yes, we are alive.  We are OK.  I am still quiet, mostly, as I am rocked back and forth by the experiences. 

But we dream now.  And oscillate.  We move in and out of the anxiety with less effort (most days).  We stay in the graces of moments with more mastery, and rest in the simplicity of the now when we can.  More careworn than airy…still…it’s a rhythm…and it’s our home.   He's my home. Which is all I truly need. 

Much Love.

 

 

 

Seen

Jenny here.

Often times, some of the most important people in your life, are not determined by length of relationship or genealogy.  Sometimes, you just know when you meet someone for the first time that you will continue to know and love them forever in one way or another.  Time can pass…but you know all the sayings…it’s like nothing, or at least the essential things, has changed. 

Back to that in moment…

First the Wil updates.  He saw his internist and audio doctors last week.  He still has some hearing loss that they will continue to monitor, and continuing wax build up…so…I guess he’s off the hook, for now, when he says he can’t hear me ;)  At his internist, they added a new med to his neuropathy management cocktail—Cymbalta—which I am very familiar with in the mental health side of things, but until a friend mentioned it for pain management, I wasn’t aware it was being used a lot now for nerve pain as well.  Cross your fingers…it will be about 6 weeks of taking it before Wil can determine if it’s helping.  He will see his BMT team in August for new blood work.  Until then, it’s just keep living!  We have about 5-6 community events on our radar for the fall…making up for lost time…and we LOVE Fort Worth (and MELT ice cream!  See pic below).  Wil has decided he needs a pic of a Pokémon on our dog’s head, since he has been playing Pokémon Go (anyone else already weary of the constant discussion of this game?  I finally downloaded it because it’s entering discussions in therapy sessions…YESSSSS…so, solely for research purposes and so I can have a competent conversation with my husband now, I am playing (sigh, lol).  So, keep on the lookout for “Pokémon-on-our-dog’s-head” posts if he achieves his wish.  #LifeGoal!  I will admit, it’s an interesting concept and changes your view of the places you visit.  You almost feel like you are seeing them for the first time, and in fact, landmark wise, sometimes I am!  

SEEN.

So often, I think we miss the mark with each other, in relationships, not because we don’t HEAR each other.  No, I think we hear at least partially, but are already formulating our rebuttal by the time the other person has finished their last word.  Sure, there are times when people don’t listen at all.  Yet, more times in my own life, and witnessing relationships in my work, people hear, yet fail to SEE. 

 

Our world seems to be screaming it right now too. 

We all ask to be heard.  Isn’t that what everyone is saying right now?  Please HEAR me?  And believe me, I think we all need to do that…But do you know what is better than someone hearing you?  It’s someone holding space for you. It’s someone looking at you, warts and all, and you knowing….they agree to see the essential core.   And you really knowing and feeling…that you make sense to them.  That you are SEEN.  This.  It transcends any opinion.  It doesn’t give advice or try to solve everything.  Still…being seen achieves so much more than being heard offers most days.

These people who can see you can seem few and far between.  But they are the ones that can have you in quiet tears without saying a word.  They help calm the inner critic and you deepen your own self-acceptance, all without that being the objective.  You can’t hide your true feelings from them, and conversely, you don’t really want to either.  You don’t need to wear any armor around them because they have made it clear—they love all of you—their love is not a la carte.  They can speak gentle truths and you are better because of it.  They can just sit with you in silence and you are better because of it.  And they allow you to do the same.  Because holding space for someone has nothing to do with words, opinions, or finding common ground.  It has everything to do with seeing from the other side and letting another’s reality melt you.  The act of truly seeing someone might be the greatest form of love we can give each other.

It’s not an easy one though.  And I am no exception.  Vulnerability, as strength, was not a message I received as child.  I think I’m not alone when I say that rules, behavior and life choices were probably more highlighted than the skill of being who you really are, outside of those expectations.  I picked a career where I hold space for others with ease every day…in my own life though, I prefer my vulnerabilities staying hidden.  Don’t crack to let light in.  Stay strong.

Side note:  While this blog has been highly personal, in many ways throughout the past couple of years, there is still so much I’ve never felt OK saying.  Still so much blocked behind fear that no one wants to hear about the even drearier hard stuff, the weaker moments, the true depths, the days that don’t always end on a high note, unicorns wrapped up in hope and glitter and such.  I joke with Wil that I need a secret blog-behind-the-blog.  Those are the stories that have shaped me more than the ones I have openly written about, yet they are also the ones I feel shame about too.  The actual vulnerable, and not just the sort of vulnerable (even in my own private writing it can be hard to get there).  That’s my own work to do…but it helps, along the way, to experience someone breathing in pain with you…

So today, sitting across from a chosen sister, who refuses to let me hide, I had no choice but to be seen.  And it’s scary and amazing…all at the same time.  I sat there, not very articulate about what a gift it was to be there with her, with her total acceptance.  Not the kind of acceptance that is just about facts.  The kind of acceptance that is acknowledgement of worth, beyond any other detail than just being.  Does that make sense?  Seen-ness as a standalone offering.  I hope you have felt this at least once before yourself…because we all need more of it, and need to bestow it, in the days and weeks and years to come. 

Today broke open my soul in a way I have been needing.  So, thank you soul friend.   I’ve always known you were an amazing friend, but I hope you know what a rare person you are in this life—and what an example to the world you are to me.  I’m pretty lucky to have found you.  Luckier still, to be seen by you.

Much love.

Safe

Jenny here.

We are moved!  Our new apartment may look like a tiny episode of Hoarders right now, but once the boxes are unpacked, some shelving installed, and the dust settles, I am sure our place will look great!  Our initial big move was the end of May, and we carefully unpacked and got major things and furniture set up pretty quickly.  Then came cleaning out the guest bedroom walk in closet and garage…the last loads coming to the apartment on June 30^th.  Ugh.  I guess it’s near impossible to NOT have all those last things add up to a mix-match of boxes and things to go through later…right?  Or am I the only one?  So give us a month and we will be ready for company, curtains up and all.

Wil and I have been in a weird place lately, like as in trying to understand and tolerate each other. 

It’s almost like a first year of marriage…again.  Don’t get me wrong, our first year of marital bliss was pretty good.  And since then has become a well-oiled machine.  We just celebrated our 16^th year the end of May…yet this year feels pretty new again.   That might SOUND great (fresh, new, exciting) but…do you remember your first year of marriage with all the adjustments, squabbles, figuring out each other?  We soar most days and we are a pretty darn lucky couple in a lot of respects.  Wil is alive, which is everything I could ask for, and more.  This "new again" stuff?  Sometimes I still just want the old him back.  And I think he sometimes wants the old Jenny back too…you know, the guy who was steady and quiet and reserved…and the girl who was free spirited, high energy, and more carefree.  Looking back always is easier...because I know we had a different set of issues then!


I am guessing this is a normal turn of events…and now I get why people break up through trauma and illness.  You go in one way, and out comes two different people, and sometimes in opposite directions.  The comfort and safety of knowing each other so well...not there in the same way.  What breeds safety?  Consistency, predictability...oh yeah, we've had SO much of that in the last 3 years!  Making our way through uncharted territory again, lol.

Side note:  We are nowhere near a breaking point and we have never once thought about calling it quits…but, you know, marriage is not always easy on a regular day.  You don't commit to the same person every day anyway, not if you are growing and challenging each other along the way.  But it definitely has given me lots to ponder about reliable personality traits might be.  In psychology we mostly believe these traits are constants.  Pick someone you can live with and tolerate because they won't change much.  I'm not sure I think the same way about my field anymore!  We are ever evolving and committing to that fact seems safest of all beliefs I can have right now.

Wil wants to live his “bonus time” life.  Wil wants to be foot loose and fancy free, without any ties or restraints.  The world, it’s his freaking oyster.

And I can only summarize my response to his zest as feeling like I want to bubble wrap and keep him in the closet 24/7….while I nap. 

Two completely different extremes, of the same post-cancer journey…he wants to live.  And I want him to live.  We just FEEL very different about how that should look!  I get it, and am supportive of his wants.  I’m just tired, working a lot, and still see his chronic pain and worry.  I have heard enough voices tell me…Let him be…and I do for the most part, I promise.  And he tries to understand how difficult it can be to go from fulltime caretaker back to wife.  I feel like my kid is senior in high school and I have done everything to keep them alive…and now they don’t need me to DO for them or give advice.  Sigh.  This part is hard.  The sending him out into the world, a place that this past week has proven to remind me just how dangerous that can be some days.

July 1 we reached 100 days until his 2^nd stem cell anniversary. The first 100 days felt longer than the last 537 days, since then.  Overwhelming to replay.  On all accounts.  He has his next check up  on Tuesday.  We are hoping for continued good counts.  He is still on the low ends of normal ranges usually, but things have been steady.  His activity level still fluctuates day to day depending on pain.  We recently filled out a functionality report.  It had me in tears.  He is not one to share about how constant and intense his pain can be, even with me (or maybe especially with me).  Every.  Step.  Hurts.  He says “I just try to push through.” And he does it with a smile most of the time, even when exhausted.   He did take the step of getting a handicap placard and cane for the hardest days.  It’s a good thing, but hard to see “permanent disability” written out.

We keep hoping these post-chemo side effects (neuropathy and brain fog) will lessen over time.  For now, they are pretty consistent.  He is enrolled in another class though this term.  I am so proud of his hard work!  And he is also continuing Tai Chi a few times a month to help with balance and mobility, but even more so as a way to deal, emotionally and mentally, with the chronic pain. 

Safe. 

It’s a word I want so much for him.  For us.  Safe and alive.  Yet cancer, often, seems to be just one thing that could take him from me in this world of violence we live in.  So, to preserve my own well-being, I’m off FaceBook for a bit to regroup.  Working in mental health, while the world spins in chaos, means I am dealing with big issues all the time, from the therapist chair and from my cube on crisis line.  No matter where in the country trauma happens, it may come across my phone line.  And being married to a Black male, sending him out the door each day feels more and more difficult too.   When I see him breakdown about the realities of it all, I break too.  I think these traumatic events affect us a bit more than they used to, before cancer, and I am more aware of self-care early now. 

While I have so much more to say on all of that, maybe for another post, know I am alive and well…and quietly living and adapting.  Finding safety in our new little nest.  So forgive me while I take some moments away.   Wil will be online as usual.  And you can find me through our Twitter @Fightbigfight or via e-mail in the meantime.  Catch me those ways if you need me!

Much Love.