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.

Panorama

Usually clinic appointments take several hours, even just for blood work.  Between battling traffic to a morning appointment, then the busy clinic, waiting on test results, then the ride home...5 hours seems to be about the average length we spend.

I get bitter sometimes. Not about the wait time. I heard one nurse tell a waiting patient once that thank goodness they were busy because it means "more people are living longer with blood cancers!"  This week was especially long though.

I'm trying to *be* with all my feelings and experiences these days, in the raw.  I'm so grateful to have a partner in crime who gets that...just today Wil said he would never want me to feel anything other than what I feel.  Gratefulness is a state of being I try to stay close to but...get this...feelings seem to have a mind of their own and come and go as they please.  The more I "try" to be grateful, the more the annoyances of little things come to the front, to demand respect.  And I do respect them as feelings along with the more positive ones.

At clinic, most of the time we are surrounded by retired people. After coming, for sometimes years, to clinic and seeing the same faces, it's social club for many.  A "diner" type of experience with coffee and idle chit chat.  At times I enjoy listening and smile to myself because these people are making the best of this crappy thing called cancer.  I'm not often invited to the conversation. Once the question of "do you have kids?" is answered, there is often a pause, and then they go back to talking about grand kids, fishing, what they did for work before retirement, etc.  

Sometimes I do genuinely smile and enjoy just seeing people living life to the fullest.  It's what Wil and I intend to do as well, each day we have. 

Other times I think, why couldn't that be us?  I get that the cancer stick can hit anyone, at any time. I never feel justified in saying "why us?"  But I do think to myself, as I am engulfed in a sea of gray hair, why now?  Why couldn't the cancer stick, if it was in the universe's stack of cards, bonk us on the head after kids, a house, a more established bank account and career?  When we, our peers, and family would have more time and resources...why now?

After Wil's discharge last Sunday afternoon, from his week of chemo, we found ourselves in the ER, just 5 hours later.  Wil had a fever so he was admitted for observation.  Tests and swabs and pokes and prods. He checked out OK and was released on Monday night. This week has been one of fatigue for him and we figured it was his immune system bottoming out.  Even his bones hurt at times.  And his neuropathy has gotten bad enough his walking was extremely painful (a new med has been added to hopefully help). Then, Friday in clinic, his counts were really low with WBC of .4 and platelets at 12 (normal would be 4-11 for WBC and 150-400 for platelets). Two units of blood and one of platelets were on the menu.  So, Friday ended up being an entire day at clinic and missed work for me.

That morning, in particular, it was the 60+ crowd.  For several hours I quietly listened to "the good old days" of sports, entertainment, education system, kids, and Texas.  I was lucky to have some family company for lunch, a little time away from the infusion station and the walk down memory lane gang, while Wil slept.

Side note:  I know those descriptions sound snarky.  It's how I felt.  Listening to people talk about grandkids pains me. It means they have kids of their own, and that they probably have had a middle adulthood without cancer.  I have a range of feelings!

I came back from lunch and decided to read and forget about the morning. What I didn't bargain for was that the real perspective, the balance, would not come from the book on mindfulness I was reading...instead, it would walk through the door and give another chance glance at life.

"The gray group" had all but left and the room was now more empty. The quiet was refreshing. 

I didn't notice him at first. He came in so noiselessly.  I heard staff asking if anyone had a cell phone charger even before I realized it was related to him, an all of 19 year old, tall, gangly young man who had sat down across from us. A late arrival.  From the sounds of the staff chirping, a very late arrival.  

In hushed, but kind tones, I could hear the nurse tell him they would need to get started soon, that the weekend clinic wouldn't be able to see him if he showed this late.  Soon his doctor, our dark December attending I love, was next to him, hand on his shoulder, eyes filled with concern, her heart firmly secured on her sleeve, reviewing upcoming treatments. 

"It's so important you make it on time. You need two more transfusions this weekend before your bone marrow transplant on Monday.  If you don't show on time they won't see you.  Who will be with you on Monday?"

He paused. Eyes on floor.

"You need someone there on Monday or we can't release you home. Have you talked to your mom?"

Softly, he responded, "yes, but I'm not sure."

His doctor's face, filled with more concern.  "Do you want me to call your mom and talk to her about this so she knows it's really important?"

"Yeah," he said in a low voice, his eyes still locked to the floor.

For the next 2 hours, several nurses, a social worker, and others would come by.  Trying to problem solve future tardiness.  He was relying on friends for rides. His car might be up and running soon if he could find some cash. He didn't know how he was getting home. Or how he was getting to clinic the next two days. Or where he would be for the night.  It made taxi vouchers even a difficult solution.

My heart sank the way it did when I left Wil alone at the nursing home that first night.  My heart literally hurt.  My chest felt tight.  My eyes filled with tears.  A rush of emotions just flooded me. I had to turn my head away to try to recover.  

I texted Wil, trying to be discreet, trying to wrap my head around what just happened.  He hadn't heard most of the conversation.  That one sentence...of compassion from the doctor...absolutely pained me:  "Do you want me to call your mom and talk to her about this so she knows it's really important?"

How do you reconcile a potentially deathly diagnosis, and at that age, without any visible or otherwise support?

He could have been my former client or student.  He could be anyone.  He could be us.  I didn't know his whole story but no one deserves to fight alone. 

For all the "gray hairs" we encounter along the way, for the things I wish were different, all the terrifying realities, the darkness that is carried alongside hope...at that moment I felt so very lucky and blessed. 

How blessed are we?  Very blessed.  Truly, truly blessed.  There I sat, with a hand to hold that holds me back.  Uncertainties?  Sure, in every moment, but not in the one thing that matters most.  We have each other. 

Wil read my texts about the young warrior just a chair away.  With tears in his eyes now, he turned to me and said "when they say cancer changes you, it changes your perspective in everything."  

People touched by cancer have many reactions. Some want to get through it, and get on with life, not be defined by it.  Others seem to make it their life, passionate about giving back to the cancer community by a career change or advocacy. The whole spectrum is absolutely a personal journey.  

I don't know exactly where we will land along that sweeping continuum...when we are not constantly in treatment and back to thinking about other parts of life more...when our life will be a little more our own and not ruled by doctor appointments, labs, biopsies, and hospital stays each week.    

Wil and I just sat there looking at each other, wishing we could offer something more than a validating smile to that young man.  The staff is amazing and caring for him with all they have in them.  There will come a day when we have the energy and resources in more tangible ways then just an understanding nod to fellow travelers.  This I know:  We won't forget life's panoramic view here or the new community of mismatched soul mates we are forever touched by. We will find paths to pass on the love with which we have been blessed.  And we look forward to being that blessing.