Adenocarcinoma,  ALK,  ALK-Inhibitors,  Alternative Treatments,  Anxiety,  Cancer,  Chemotherapy,  Dan,  Grieving,  Honestly,  Journaling,  Leah,  Lung Cancer,  NSCLC

Eight Months

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I took this photo for Instagram, 34 weeks ago. The caption was “Quiet noon hour.” Four friends of mine ‘liked’ it.

It wasn’t the only photo I took that afternoon of myself. I was in the business of taking selfies back then. I took selfies or made Dan photograph me constantly to promote the clothing that I sold. Here, I was wearing a kimono that I wanted to feature, so I had been snapping different shots to feature it in the hazy overcast afternoon light coming through the window of Dan’s first hospital room.

He was in his bed, probably working on his phone. I was taking selfies and fidgeting. We had no idea what was going on. We thought he had pneumonia or major allergy problems. Or some kind of random infection that they would could prescribe an antibiotic for and send him home.

However I felt in my gut something was about to change. I snapped this photo, to just capture myself—not the clothing—for some reason that I couldn’t pinpoint other than a vague desire to have a “last” photo of me. I felt slightly over-dramatic and foolish. But after I took the photo and uploaded it, I started googling inspiring quotes about HOPE.

The first doctor to mention cancer came in that afternoon to speak with us.

So there is something to be said for intuition.

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Tonight we had a quiet evening at home but when Dan headed to bed at 9, I wasn’t ready yet.

I turned on music and put on a new dress and a little makeup, and sat out on the front porch with a glass of whiskey. I wanted to enjoy myself but I felt alone and tired.

I walked back inside and sipped my drink. My phone had a text message light up.

“I love you.”

A tight ball of sadness in my chest rose into my throat and I swallowed hard. Waves of tension spread across my shoulders and up each side of my neck. Tears stung the corners of my eyes—and I know that is very cliché to write, but honestly, when tears sting at the corners of your eyes, there is just no other way to put it.

I texted Dan back that I loved him, too.

I refused to cry, so I let the stinging in my eyes subside and all of the tension simply swirled in my torso, trapped.

It is not daily but it is quite often–I periodically need to process it all again. The cancer changes everything. I am changed. I am a trembling rhythm of misplaced sorrow, anger, unknowing, and hope. It goes, and goes: await, unlock, release, revise, whisper, weep, rage, allow, and mend. There are days that I feel up for it; there are days that I don’t.

Eight months have passed since his diagnosis and he is still alive and the worst-case-scenarios are effectively being proven not ours to bear. But I did carry them, as possibilities, as potential seeds in my pockets–such tiny but heavy burdens–for days, weeks, and then months at a time. We just didn’t know for a while…

And then we did know. Treatments worked and genetic testing results shined a beam of light onto calendar days stretched out further ahead of us–next year, the following year. I eavesdropped chat group conversations online where patients who took ALK-inhibitors had no progression of disease for a substantial amount of time. Possibilities for Dan are lining up on the market and in clinical trials: crizotinib, ceritinib, alectinib, brigatinib, etrectinibPF-06463922TSR-011CEP-37440X-396.

Here is my deep, dark, awful secret that gives me grief: It’s not enough. It is not enough for me and what I want with my husband. I want so much more, so much beyond what these drugs could give us. Even the alternative treatments we are doing–I have no way to know what they promise. Have they worked? Possibly. Will they continue to? I don’t know. I still want more than I am being given. I have wept with greed.

What is saving me is the generosity of moments when I can still go to him, and receive comfort or just rest beside him. I use touch to help mitigate the pain. I liberally feel the new parts of him… Quiet pillows of thin skin below his eyes, puffy with fatigue and sinus inflammation. The uneven patches of hair I am memorizing: sparse and prickly across the top of his head, downy gray thickening quickly all over, and the dark brown stretch at the nape. The port nestled on the right side between his clavicle and shoulder–a hard, square knot like a calcified cyst–so tender after surgery but now accustomed to my resting brow. The hollow dip of his stomach when he rests, all the fat of his belly gone, with a sternum and ribs raised like canyon peaks, massaged by my curious fingers.

Can we keep going and find a way into chronic management of lung cancer? Can the drugs keep developing and give Dan an extended life with disease? I feel fortunate to even be asking these questions eight months after his diagnosis. And yet, I haven’t found my peace with it all. Does one ever?

 

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8 Comments

  • Charlene Herzing

    How our minds work? I’d like to know.
    I was thinking about that picture and that day as well. I have similar thoughts.
    You write it so beautifully. Now I can’t type for the tears.

  • marchelle smola

    Lovely Leah and Dan, this old band mom keeps praying. Thank you for your insightful beautiful posts. So many can’t even articulate but you are and it gives us all hope. Yes cancer changes everything but we will all standby you and Dan and you families in hope and love. Give Dan a hug and your lovely child a squeeze. Hope Dan remembers who I am

  • Ginny

    The beauty and honesty of this takes my breath away. Thank you sharing this. You and your precious family remain in our prayers.

  • Katy

    I stumbled across your blog randomly from Instagram. This post is so touching, so moving. Cancer changes everything and I really appreciate your perspective – thank you so much for sharing. I really needed to read this today, your are such a beautiful writer, you have a real gift – your writing transports. Love & well wishes to you and Dan x K

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