My MEGA Blog Post

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?

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.

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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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.

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.

Two Months in Photos || Celebrations + Growth

Oregon’s spring came generously early this year. I couldn’t help but feel it was meant for us. The last two months have been full of struggle and change, so warm air, full sun, and colorful blooms as early as February were like stars in a deep, dark night sky guiding me along, promising some kind of hope. We are navigating our way and trying to embrace what is new and different.

We celebrated Dan’s first scan post platinum chemotherapy treatments (the scan that showed the tumors have all died or stopped growth) as big as we could: we took naps in a luxurious hotel bed in downtown Portland. Haha! That evening, we joined Lorri and Carmen at The American Local for an over-indulgently delicious dinner.

{Five stars! If you haven’t been, you need to go now! We fully endorse everything we devoured:* Thai pork rice balls with coconut milk and fried onions, bacon beignets with espellete powder and honey, crispy fried chicken in lemon hot sauce, skirt steak skewers with sweet and sour leeks, octopus skewers with breadcrumbs and harissa, pork belly skewers with maple and siracha, AND korean rice cake skewers with guanciale and tonkatsu sauce. Oh, and the veggies! Watermelon radishes with black garlic, scallions, peanuts and nuoc cham, fried brussel sprouts with pickled jalapeno, orange, and miso aioli, and cumin roasted carrots with avocado, cilantro yogurt, and sunflower seeds. The ’08 King Estate Blanc de Noirs Brut and ’13 Adelsheim Pinot Blanc weren’t too shabby either. *Of course, Dan still didn’t have a full palette of working taste buds to enjoy everything, but he did try it all and raved especially about the octopus.}

High on life, we stuffed ourselves with ice cream afterward at Salt & Straw, Dan’s favorite ice creamery. I was able to partake despite my whey allergy and excitedly threw back a cone of coconut ice cream with salted caramels. Before heading back to our hotel room to collapse, we stopped by Powell’s and I picked up books while Dan enjoyed espresso at The Fresh Pot by the best barista ever, our friend Jess.

Celebrating continued the following night as we were lucky to have a special event held in Dan’s honor by Seeds of Hope. It was a private party night at Scotty’s Playhouse in McMinnville, where Raine had the entire play center to himself and his friends. Five friends came and enjoyed pizza, cake, and drinks provided by SOH. It was incredible! We didn’t have to lift a finger—we just invited friends and then showed up and enjoyed watching the kids play. Raine was beside himself with joy and Dan and I both felt so happy to watch him have fun. Before the end of the night, SOH also gave us a huge surprise! They gave us a basket full of gift certificates from our help page (including massages, golf, food, coffee, and books!!!) toys and books from Raine’s wish list and special gifts: repairs for my bike from Tommy’s Bicycle Shop in Mac, tickets to the Oregon Garden in Silverton, and a family getaway for three nights at Sunriver Resort near Bend, Oregon. AND, they totally surprised Raine with his first bike!!! A super rad Lightning McQueen Huffy with training wheels and a carrying case for his favorite Cars characters.

Of course, post-celebration was a bit of a reality check. Dan had good news and stable tumors but the damage of chemotherapy was nowhere near done. He started maintenance therapy immediately (low dose Alimta) and we were told to expect at least six weeks before the effects of the previous Cisplatin doses would start to subside. Complete side effects he continued to struggle with were ringing in his ears/hearing loss in his right ear, low red blood cell count (= anemia, requiring two blood transfusions), fatigue, nausea, and loss of appetite/taste buds. However, March 4th, I received a fervent text from him notifying me “HONEY. I ATE A SLICE OF PIZZA. AND IT WAS GLORIOUS.” By April, his chocolate taste buds returned, and we had a celebratory Cheese & Chocolate party. He has been able to do burgers, soups, salads, veggies, and eggs (and octopus). He carefully reintroduced some coffee and beer, too.

A great boost to Dan was making it into work for short days, staying awake more and more to enjoy his crazy wife and son, and as always, a visit from Jim and Char, as well as a group visit from college friends. On April 13th, he had a port-a-cath (“port” for short) surgically inserted into his chest to use as an easily accessible direct line for infusions and blood work. These are very common for cancer patients who have long term treatments. Side effects of chemotherapy (particularly anemia) make it difficult for nurses to find, penetrate, or flush veins. In addition, Dan is NOT a big fan of needles (despite his tattoos) and he held out a very long time and put up with a lot of abuse to his arms. At our last ER visit alone, it took the nurses over an hour to determine they absolutely could not get a reliable vein in either of his arms for the dye injection on his CT scan. Needless to say, it isn’t fun for nurses or Dan to deal with his debilitated veins. He held out on getting his port for psychological reasons –He felt a port signaled he was “giving in,” or like it was a final badge/label for him as a cancer patient. In a similar way, he felt he needed to “tough it out” and wait as long as he possibly could. I think in retrospect, he now sees that it wasn’t something that is necessary to “tough out,” and it is no more a badge than his partially bald/fuzzy head. Which is adorable and just part of who he is now. The cancer isn’t him. The port will be a breath of fresh air moving forward for his multiple monthly blood draws as well as infusions. Being the nerdy scientist that he is, he is actually fascinated with it and will tell you all about it if you ask. Something about inserting a key to unlock it…? I have heard him tell several people about it and he asks me to touch it all the time. I think he embraces it now.

I have spent the last two months growing tremendously as a person. I am stretched beyond anything I have ever been. My role as a mother has catapulted me into a firm place of sheer exhaustion yet perseverance. I never expected to be the primary caretaker of Raine with all of my fatigue, aches, and mood swings, but here it came and I threw myself in head first. I came up for air only a few times to find myself without much..not a life jacket or a buoy. I nearly talked the ears off of my therapist. I desperately called my girlfriends and begged them to come visit again. I tried to distract myself with retail therapy and avoided my multitude responsibilities like paying medical bills and closing my business. Occasionally, I tried to go out for a night with friends but struggled to have the energy to enjoy myself or stop worrying and relax. I still don’t know how to be a really good friend or neighbor when all I can do is think about myself and this whole cancer situation.

Of course, my girlfriends lined up. They drove 1-3 hours to help me do laundry, rearrange furniture, clean dishes, and occupy Raine. They boarded planes and came to hear me babble, clean my car, take me out to dinner. I learned very quickly as I talked to them, and my therapist, that if you put me, the Perfectionist with a capital “P,” in charge of my household, it is a recipe for utter disaster. Throw Fibromyalgia and Depression into the mix and it is almost completely debilitating. BUT, I am doing well. I am not using unhealthy coping mechanisms of the past, and not giving up. Sure, I am shopping too much and stay up too late once in a while working on my puzzle and drinking cocktails or wine, but as my dear friend Amy said, “I’d give you the $ you have spent on shopping to not see you go back to the dark places you have been before.” I find it unbelievably ironic that those moments in my life, that I felt could be full of no greater despair —landing me in the hospital, challenging my marriage, and unraveling my hope for the future—just can’t even hold a candle to the stress and worry I feel now as my life has been rearranged with Dan’s diagnosis. There is something different inside me now, however, and I don’t know if that was becoming a mother or these extraordinary circumstances or both; I am strong enough. I am blessed to have loved ones who keep reminding me of this, in case I doubt it.

Don Raine has been absolutely full of energy and growth this spring. He finds tremendous joy in all of our visitors and playmates while friends come to help, as well as his two days at daycare each week. He has formed a new bond with me that is very rewarding but exhausting as he is more dependent than ever upon my attention. He is straddling his babyhood and boyhood fiercely, refusing to give up or give into either. He refers to himself in the 3rd person as “baby” and will not give up diapers even though he is potty trained and wants all the benefits of being a big boy who can watch TV and eat candy.  He is fascinated with his babyhood and loves photos and stories about it. He pulls out his infant toys and connects them to his current toys and plays with both. At bedtime, his stories are now requests of “How baby was born,” and he is starting to ask us to tell him the stories of the birth of everyone…Uncle Doug, daddy, mommy, baby Harvey, JD, Oliver, the list is growing. He is easy going and listens and obeys, but is constantly looking for that extra inch or a bit of give in my stance to wiggle into and throw a party. He obsesses over toys and his wish list, likes to help with chores and cooking, dance, watch Cat in the Hat, and videos on the iPad.

He is starting to really struggle with the nature of our household (Mommy and daddy are tired all the time! / Visitors come and go  / Unpredictable moments). Change is hard for him to process, whether it is small like daddy going back to work more, or a change in routine when Dan and I are suddenly taken away and in the ER for the night. He will be starting play therapy soon and I am looking forward to getting feedback for helping him handle our situation as he develops and grows more.

We look forward to the weeks ahead and watching a new routine emerge as I start to work again and Dan gains energy and builds his strength. We are so blessed by our home, friends, the beautiful area we live in, and family. It all inspires me and I hope that the parts of it that I capture and share with you, my sweet readers, is inspiring to you, too.

HAPPY SPRING!

Lovely Moments || Spring in the Backyard