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)

 

 

 

 

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.