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.