Light

Jenny here.  Wil had another follow up appointment at the clinic yesterday.  Most numbers are great!  We have figured out that whenever he has a round of steroids (as he did over the weekend) his blood sugars get high and he needs insulin.  The new plan is to teach us how to take his sugar levels and administer insulin if needed.  He won’t need long lasting or daily insulin, probably just for a few days a month when the high numbers are steroid induced. 

We also discussed PICC vs. port.  Before, he was not a candidate for a port, but medically he is OK and WBC are rising meaning now is the time if he wanted the procedure…he was skeptical at first because a port means being stuck with a needle each time they access it.  The risk of infection and daily life activities (like showers and exercising), however, are made better with a port (anytime you get a PICC line bandage wet it is a trip to UTSW for a 20 minute dressing change, which opens you up to a risk of infection each time…and I can only imagine him sweating in the summer and how many times we would need to go in!).  After some deliberation, he opted to go ahead with a port.  Friday he will go in and be sedated for the procedure so he has time to heal a little before restarting chemo next week.  And yes, things are going according to plan…he will readmit for chemo cocktail B on Tuesday the 11^th.  I am absolutely giddy lately about his progress and so hopeful for the rest of treatment.

I sat in the clinic exam room yesterday, light pouring in from the open blinds, looking at him, sitting upright on the table, like there was never a time he couldn’t.  Everyone says “I don’t even recognize you Mr. Clark!”  He doesn’t smile, he is just quiet.  I ask him what he is thinking and he says, “I don’t want to do this, but I have to.”

Wil and I are at very different places right now with this process.  Some of it is because we are very different people at the core with how we respond to stress.  Part of it is our different roles in this journey and that I have been conscious 6 weeks more of this road then he has been.  And I’m not in his shoes.  He is cognitively ALL back now (as many of you have noticed he is back on line and on Facebook now!).  He is just beginning to sort through what the last few months have meant, taking treatment day by day. 

I struggle with how to ask my long-time partner, who also has cancer, to consider sharing himself and his feelings with me.  I can only project what I think he might be going through.  I ask and he is mostly says he is OK.  He has never been a big talker, but he’s more quiet than usual lately.  How do you give someone you love space without feeling shut out?  It’s a difficult thing for this extrovert to wrap my heart around.  He says “this is who I am,” which to some extent is true, but I am used to the serious side of him in smaller doses rather than it being the norm.  I wish I knew what was going on in that head of his.

One year ago today though, life was very usual.  Tonight is the eve of the big change in our life. 

Wil was working a temp job and back in school, having finished his A.A. in December 2012.  I was working my usual craziness, but floating, head above water.  We had been on vacation in October 2012, but were already thinking about escaping on another cruise in the next year, hoping to see family in the fall, wishing we had more awake hours together.  I had thought, if we can just make it through the next 3 years until Wil graduates with his BA in Math and can start teaching…if, then…I could quit a job, be home more, be more financially secure, and be…happier.  My heart’s true desires…more time, more stability, more Wil.

March 6, 2013, we would wake up, and both get ready for work.  Wil would leave first, having a longer commute.  But by the time I would get to work around 8:30am, I would get the call. 

“Jen, I don’t know what is wrong, my chest hurts.  I can’t sit or stand or breathe.  I am at the doctor’s office.  I’m scared.” 

I rushed off, not knowing what to expect.  They had thought he was maybe having a mild heart attack since the pain was radiating all around his chest area.  A day of tests later and follow-ups scheduled, we were told it looked like he fractured his T6 and were sent to a spine ortho doctor.  That doctor visit would be the first one we would hear, “I’m sorry, but you have cancer.”  Only to have biopsies for months not confirming anything.  We would have many cancer scares followed by celebrations of “inconclusive.”   

A year ago today…That life seems miles ago. 

 “Darkness cannot drive out darkness: only light can do that.”  MLK Jr

So many times I have asked myself, since March 6, 2013, “what if this is it?  What if this is all we have left?” and feeling all the emotions that come with it.  I had my plans…3 more years until happier!  3 more years until the life of our dreams!  Growing old with the love of my life.

The first things people say to you are, “have faith,” “there is light at the end of the tunnel,” and so forth.  I always struggled with these well intentioned statements because they felt exclusive.  Maybe because I grew up thinking that to have faith is to be happy, content, without doubt.  To love means to not be discouraged or scared.  Maybe these lines feel that way because it is people’s way of not dealing with their own darkness when faced with the idea of death. 

I have had an array of uncomfortable and conflicting feelings and still do.  At every turn we are left with wonder.  And in fact, there are no guarantees, so this life, as is, imperfect, could actually be it…but that was true before I had the reminder of mortality.  I consider myself to be full of light and it has helped me make it through a year of dark questions.  Our emotional life is three dimensional and in living colors, the dark shades are just deeper places.

Light, in all its mystery, is all inclusive.  It serves a dual role, as both particle and wave. White light embodies all colors, it’s darkness that excludes and minimizes.  Light is ALL, not the absence of, not just one shade of experience… In the emotional kaleidoscope of cancer world, present feelings, like ever changing bits of light, of color in my scope, turning round and round with new medleys and designs, moment by moment… The many hues of human experience don’t contradict the depth of my love or faith, because like light, my joy is inclusive too.  Isn’t that the mysterious and amazing thing about it all? 

So what if today is all there is?  If living with cancer is what is left?  My hope is for years and years more with Wil.  But if this life, and this light, and our love is what is left…I’m already living the happier, right here, right now.  I’m living in an inclusive light and that, even with uncertainty and doubt, it’s why there is joy.  The light does drive out darkness.  I was waiting on joy and light, now I know it’s been there all along.