Adenocarcinoma,  ALK,  Cancer,  Dan,  Flowers,  Grateful,  Holidays,  Honestly,  Hope,  Hospital Stays,  Leah,  Lung Cancer,  Metastasis,  NSCLC,  Oregon,  Raine

My Mega Blog Post

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We have enjoyed a beautiful start to Spring here in Carlton, Oregon. Raine enjoyed celebrating Easter with egg hunts, gifts, treats, and time with friends. Dan’s exam and maintenance chemo treatment on the Friday that followed Easter was without concern or change.

For Christians, Easter is a celebration of Hope. I remember learning about Easter’s entire procession as a child in Sunday School. What stood out to me was the palm fronds waved and placed in adoration of a spiritual leader. And then the death of such a beloved teacher and inspiration, to be followed by the mystical resurrection of his body. It was fascinating for me to contemplate as a child, and while I was learning about Christ in a Protestant church, Dan grew up learning about him in a Catholic Church. No matter the dogma, it was a holy week.

As adults, Dan and I don’t attend church. We don’t ascribe to a particular faith. We are teaching Raine what we have passed down as traditions in our families and focusing on emphasizing the central theme. Do unto others. (Don’t be mistaken that this teaching is too simple.)

At this point in our lives, what does Easter mean for us? What does Hope mean for us? A family living with incurable cancer?

Easter Egg Hunt
Egg hunt at our house with Pax and Nexus
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Town Egg Hunt at Wennergberg Park, Carlton, Oregon
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Raine sitting in his “Nest” – A tradition passed down from my father’s childhood on a farm; make a nest with clothing and find a surprise within it Easter morning!
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HAPPY EASTER! This kid is getting tall! LOL

Hope can be a very bruised emotion that is absolutely courageous to develop. And it can be stolen from us–how despairing is that moment! When it is taken from us, we starve. But even those of us starving manage to survive! When I feel completely afraid of living, uncertain that I can navigate the moment that breaks what I know and cling to, I seek out those who survived amidst losing hope. I read Elie Wiesel for the first time when I was 17 and the words pierced me for the rest of my life. Because of him, I believe there is never a burden so great that we cannot bear it. For even if we give into the burden, and we are diminished, we bore it for as much as we could, and there is value in that effort, no matter how small. It is a choice we make to carry on, whether or not there is a reward, or improvement. We strive to live, an act that we consider so simple that we can’t accept that it makes us and our efforts no greater than that of an animal. We don’t need Hope to survive. But with Hope we honor ourselves and the process we are experiencing. It is for a greater good. (What is the greater good? Pull up a chair and let’s discuss.)

Dan was diagnosed with Stage 4 Lung Cancer (Metastasized to his Brain, Lymph Nodes, and Spine) 18 months ago. What has been our source of Hope? Sharing our story. This is not uncommon. How do we do it? Every day since his diagnosis, Dan has worn a wide turquoise band reading “End the Stigma.” If someone should point to his bracelet, he can educate them about his cancer. I am writing this blog post. I am sharing our realty as best I can find the words. Because we are more than a diagnosis. We are more than the difficulty we face.

We are you; do you see it?

Our bodies are designed to survive; the rigorous work of cells and their sacrifice, on an un-ending basis every second of every day–their unison that ushers us into each moment, isn’t our biology Love? Such effort! A holy blueprint to breathe and make choices, alive and changing, giving us moment after moment to exist. We are human and so are you. So tell our story. Understand that our story can be yours. Learn and share. Give us more life in the blessing of your words and anectdotes.

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When Dan had a seizure in February, his anatomical reality burst into Raine’s bedroom and altered the very moment and memory Raine had of his ‘nighttime routine with daddy.’ I attended to Raine with every fiber of my mothering-being in those moments between seizure, recovery, medics, and an ambulance taking daddy away, while also attending to my distraught husband and reminding myself to breathe, and this taught me: Yes, we live through it. We bear it. We trust what it is given to us and we make sense of it to keep going. Hope was the moment of wishing Raine could make sense of it all with my body next to his. I did not promise him anything. I lay with him in the bed and stroked his head, answered his questions, reminded him I am with thee. And the beauty and joy of hoping in something beyond what we can see is just that— I am with thee, whether I am seen, whether I am in a physical body, or not. I yearn for more compassion in our world because of this simple moment with my son.

Dan has been unable to drive for the past six weeks. This has meant he has traveled to and from work relying upon a co-worker, me, or the county bus system. It switched our lifestyle around. It stole from him his independence but gave him the ability to watch the shift of light in the sky or the hawks rising and diving, and listen to music again with his earphones. He started stalking records stores and talking about music more. He had shows he wanted to see. And our date at the Oregon Symphony for The Planets by Gustav Holst moved us to tears.

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A beautiful floral arrangement by my friend, Stephanie. This outrageous beauty is on our coffee table. :)

Which brings me to our decision to relocate to Illinois. Dan’s cancer is incurable. We have known this since Day 1. There are families who receive Dan’s diagnosis and have no time. We have had the extraordinary gift of 18 months to live here and make more memories on top of our already amazing memories we have made over the past 10 years. What a gift!!! We love it here. We love everyone who has been with us in our journey here. And now it is no longer sustainable for us. Dan has worked as long as he has been able to work without his work taking a toll on him, and I have made my island of support work for me until I couldn’t anymore. It is time to change. As many people are learning, the greater Portland area is expensive to survive in these days and our little family was not set up to survive the hit of an asteroid like cancer. I go back and forth about feeling guilty that we weren’t financially prepared for a life-long battle with cancer but everyone is quick to remind me you just can’t prepare.

And after conversations back and forth over the last year, we are ready to begin a new chapter! We will be in Illinois, living in the greater Peoria/Bloomington area. I will have the support of my sister, father, lifelong best friends, parents of said friends, aunts, uncles, and cousins, etc. Dan has friends from college in the area and his immediate family as well as his relatives will be 2.5 hours north. We need them. All of them! It is as simple as that. We are ready to establish a new life and it will be a new lifestyle, very different from the one we have had (but no less beautiful!) to support our son and our family.

If Dan didn’t have cancer would we be moving? No. Nope! Not at all. (No offense, Illinois).

Is it scary to relocate across the country? Heck yes. I can’t even tell you what my planner looks like these days. Lists upon lists. Calls upon calls. Emails upon emails. Appointments, errands, applications.

Is it the right decision for our family? Absolutely. You can’t deny the feeling in your gut and the vision that carries you forward. It’s that Hope thing.

Are we sad? Of course. This is an example of “Adulting.” You do what you need to do even if it isn’t “ideal.” You sacrifice. Things need to get creative. And honestly, our tears will honor what we built and were a part of for 12 years. I predict that there is no shame in balling like a baby when I drive East on I84.

What is our timeline? The goal-said-balling-driving date is June 6th if not before.

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At 11:00 p.m. Monday night, an on-call Cardiologist in the ER explained to us that Dan’s heart was surrounded by fluid, and it was so acute that should we wait for the morning to drain that fluid, Dan’s heart would suffer cardiac tamponade, which meant his heart would likely collapse against the pressure of the fluid and no longer be able to pump blood to his brain and vital organs. This was not planned. This scenario had not been laid out before us as a possibility with his cancer–not because our doctors were ignorant, but because they knew it happens but not always, and they did not want to burden us with worry about something that may or may not happen. I did my best to listen to every word the cardiologist said, but honestly all I could say to Dan after the doctor left the room was that he reminded me of a Portland hipster version of Leonard from The Big Bang Theory. We giggled like school kids even though the weight of the world was upon us. I scribbled notes in my lbnb, alongside notes of inspiration I had been taking on writing a poem about the mystic biology of cells.

A team was called in and an emergency pericardiocentesis was performed, releasing a half liter of fluid build-up from the surrounding heart membrane. Dan spent Monday night, Tuesday, and now this morning in the CICU watching further fluid drip out of his chest. When the fluid stops, he will be able to leave the CICU and hang out in a normal hospital room (At which point we will have friends delivering the food of our choice from Portland restaurants!)

When I came to him Tuesday evening, after securing Raine with a friend to babysit, Dan was sweaty and tired in his blue and white checked hospital gown, surrounded by cannula pushing oxygen, dripping fluid from his heart, monitoring and gathering data. I teased him for adding a cardiologist and the CICU to his resume. He laughed, but it still hurt his chest to laugh. He had a grouchy nurse and you better believe that we worked her over and made her happy by the time we were done with her. He watched his usual Travel channel or Food Network channel, read the music and political magazines that I brought him, ate the ICU-mandated cafeteria meals, and snoozed as much as possible in between interruptions for urinating, checking his fluid bag, and chirps or rings from his cell phone. He is still working full-time.

So let me give you a piece of my Hope:

Wednesday we learn that Dan’s pericardial effusion is due to a random viral infection. He receives antibiotics and it is over. If not, then it is malignant fluid and the cancer metastasized to his heart. He will begin using Crizotinib to treat the cancer and he will have a spectacularly uneventful procedure to create a pericardial window. Regardless, he will come home and celebrate his 39th birthday this weekend with Raine, me, and his lifelong friend, Javeed Shah, as well as Jay’s family, in a gorgeous trip to the Oregon Coast. The weather will be stunning.

I will take pictures.

I will write a blog post about it.

Did I tell you Happy Easter?

 

HAPPY EASTER.

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6 Comments

  • Melissa

    Your writing is a ray of hope, for anyone going through anything that they may perceive as difficult. Though your story is one that puts everything into perspective and slaps those of us foolishly taking anything for granted back into reality. thank you for being transparent and giving the world each piece of your journey, as impossible as that sounds to me, you still find the courage and generosity to keep sharing. forever grateful for our friendship.

  • Ed Kulzer

    Thank you for your tremendous gift of testimony, of presence, & yes— of hope.
    My love, heart & thoughts are out with you all.

  • Melissa

    What struck me most was the part about you two making the grumpy nurse happy in the midst of all that you’re going through. I can totally see that! You two have the biggest hearts and exemplify compassion and love constantly. We are so looking forward to seeing you this weekend and celebrating Dan’s birthday. I share your hope for a positive outcome this week, but regardless of whether it’s a virus or the cancer, we all know Dan’s figurative heart works just fine (much better than most, I’m quite sure). Xoxo

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