Wednesday, April 22, 2015

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.

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