Wednesday, December 31, 2014

Christmas 2014

These are all photos taken by our talented friend, Christie, for our holiday cards. I can’t even tell you how much I love them. We were at Cana’s Feast, and those are my beloved mountains in the background. I’m not one to wear bright red, or even put Raine in bright red, but it happened by chance at the last minute when I raided his hand-me-down boxes and my latest LuLaRoe shipment. I think we look super cute. There is such a great deal of joy radiating from these photos, and that makes my heart swell. I designed a holiday postcard that reads JOY and shares our wish for joy in the lives of our friends, family, and supporters. That includes each of you, my dear readers, so even if I didn’t have your address, it is my hope for you!
I do wish that I could tell you all about our Christmas filled with joy. However I found Christmas extremely difficult. I wanted to post our photos and tell you all, Happy Holidays! but I felt that would be absolutely fake. I struggled with a great amount of anger and heartbreaking moments the past week, and at first I believed that I could not write publicly about them. The truth is, I want this blog to be authentic. Of course that means it might appear completely depressing, but I have to trust that those of you who have reached out and thanked me for my writing understand that I am leading you along a path of winding and sometimes very dark passages. I do not wish to pretend otherwise, so I trust that those of you who want to stay the course with me, will! Those of you who cannot; it is okay. We can part ways. I would never blame you.

I knew ahead of time that Christmas would fall on Dan’s days 5 – 7 of his chemo round, and that is usually what I call his Hibernation Days. He sleeps SO HARD. It is like his limbs become filled with lead and the tiredness sinks in so incredibly deep, it is hard for him to describe. So I expected that much and didn’t make any plans for our holiday. I knew that I alone could be providing Raine his Christmas experience. And then Dan actually kept rousing himself to participate. I feel like it took a toll and it is why he continues to sleep more this week. Also, he has a common cold that is dragging out the fatigue. But it is just like Dan to pull out some stops and surprises—He was fading Christmas Eve, but was able to shop, prepare Christmas morning casseroles for us, have some FaceTime conversations with family, and watch some Saturday Night Live with me. Christmas day, he woke and had breakfast with us. We watched Raine discover Santa’s half eaten cookie plate and begin to shake with excitement as he opened presents. His joy and excitement was adorable. We shared the joy of watching Raine experience this magical holiday for the first time as a “believer” in the magic.
Once Dan retreated into hibernation, I took Raine to the park. It was a dry, still day and we had his favorite park– “Dragon Park” — all to ourselves. I cleared my mind and let Raine dictate the experience. We fumbled around and giggled and went back and forth playing with his two Disney die-cast cars–mostly throwing them and shouting, retrieving them, and repeat. At one point, his laughter while he was in the swing, hurling his little cars as far as he could, blessed my soul. However the quiet of the park and the presence of only he and I made my stomach ache with what I knew was a completely fearful peek at future loneliness. Is this what Christmases would feel like after Dan dies? Just Raine and I. Suddenly our voices echoed too sharply off the trees. The air grew unbearably light and the feeling of my bones was hollow.
After the swing, Raine wandered aimlessly for a minute and then commented, “I want to go home to daddy.” I didn’t know how to tell him daddy wouldn’t be awake.

So here is what I felt on Christmas Eve and Christmas Day and every day after…Anger and exhaustion. I am trying so hard to make all of the right choices and behave as best as possible given the gravity of his prognosis on my mind. Life feels like it has been unraveling the past three months and I can’t pin down what I need to. When I feel ready to place a pin, everything shifts. And I am trying so hard to keep my patience with a 3 year old testing his boundaries and independent ideas. Lord have mercy.
Every single Christmas with Dan has been a special delight. Even our first Christmas together, when I had the flu, was beautiful. I lay drenched on my parents couch in a blind fever and he sat with my (newly introduced) father, mother, sister, and sister’s boyfriend, intermittently caring for me and opening our gifts. Did I ever dream eleven years would bring us here to this experience? No.
No, never.
And I don’t believe at all that this was our last Christmas together. But it was a Christmas for me to grieve the loss of unknown future Christmases. As a friend pointed out, I may need to grieve every holiday and every special event all year long until September 19, 2015 before I can begin to heal what has happened to my heart. It is a simple fact of the unknown and adapting to a precarious diagnosis that begs, Who Knows? Of course we all live in our tiny, haphazard moments knowing that they may be the last … but we don’t typically dwell upon it. I am tightly curled within the dwelling. My prayer is for comfort, for peace. And that his my hope for 2015, despite our journey.

Saturday, December 20, 2014

The Friday Before Christmas

It is hard to believe that three months ago to this day, we were receiving the shocking news about Dan’s cancer. All we knew at that time was that it was considered Stage 4 lung cancer because it had spread to his spine, lymph nodes, and brain.
In a strange way, I don’t even feel like the same person who received that news. I took that hit. And I survived. We both did. I don’t suppose you ever go back to the person you were before.
Today, at Dan’s 3rd chemotherapy infusion, I brought in sandwiches for lunch from Potbelly (Dan’s request) and I was concerned the odor might cause fellow patients to feel nauseous. I checked with the staff and also asked the man sitting nearest if he would let me know if the smell of our food bothered him. (Dan has had very little trouble with nausea, but I know that might not be the case for others.) When the man was getting ready to leave for the day, he came over and said a quick word to Dan about how nice he thought Dan’s wife was, and how he could tell Dan was a cancer survivor because of my kind consideration.
I am hardly a veteran. The habits and the places have just become familiar. So much still lies ahead, unknown.
I DO know the hospital really well now. I know how long it takes to get here depending on what kind of traffic there is at what time of day. I know it is best to send Raine to Bronwen in Sherwood, rather than reverse commute with McMinnville involved. I know where it is best to park. I know to bring a sweater because I’ll get cold. When we walk in for chemo treatments, we have Dan’s preferred chair, our expertly packed travel bags, knowledge of the mini fridge and where to get ice, how to use the microwave, how to connect our phones to the hospital Wifi. The familiar sound of his infusion has a rhythmic cadence that coaxes me into napping in the recliner next to him.
Despite the ease of the place and our habits, I felt a lot of anxiety about today. I knew we would get the results of Dan’s CT scan and that fearful knot in my stomach that took up residence 3 months ago tightened more and more as the days of this week crept by. I called April and asked her if she could visit this weekend. Luckily, she had a couple pop-up shops to do in Vancouver today and tomorrow, so she was able to come meet us at the hospital and take me to get lunch.
That was key. Having a good friend here. Something to look forward to, past the news we would get in the morning.

The news we got was good. His CT scan showed no new lesions and an overall reduction for his known various tumors. The primary tumor in his left lung (pictured above) shows a 15% reduction (I broadcasted erroneously on social media that it was 50%~My apologies. Regardless of the number, we were still thrilled because often there is no reduction in the initial rounds.) Other growths, particularly in his lymph nodes, showed 40-50% shrinkage.
Again, We. Are. Thrilled. Dan is not only tolerating the chemotherapy (and my assorted home treatment voodoo) very well, the tumors are shrinking.
Combined with the knowledge that his genetic mutation is ALK (and therefore how ALK tumors behave and respond to treatment) we are feeling extremely fortunate.
I was reminded of this so sharply as I started reading my new book “Wild” after Dr. Duffy left. The author hikes the Pacific Crest Trail from Southern California to Washington as a way to cope with her unhappiness and come to terms with the death of her mother.
(Spoiler alert) The author’s mother was also diagnosed with stage 4 lung cancer and despite her youth (in her 40’s) it was inoperable and untreatable. She died 49 days later.
49 days.
Dan’s cancer is treatable and we now know responding well to treatment. My heart is full of gratitude. He is a cancer survivor. I don’t believe cancer has to be 100% eliminated to bestow that title. He is surviving every day. And I will continue to make my goal every day to support him, love him, and protect him.
I am popping some champagne tonight. Happy holidays and cheers!

Thursday, December 11, 2014

Holidays 2014

What a busy week! The holidays have our calendar full. Looks like cancer won’t be slowing us down! I started the week trying to take Raine to the gingerbread village decorating party for Valley Emporium, but he only lasted about ten minutes (long enough to pick out our candy decorations, eat a bunch of them, and then lay down on the floor and tell me “I want to go home.”) I’ll try again next year and hopefully have better luck.

We waited in line a few minutes to see Santa and when it was Raine’s turn, he told me he wanted to walk up to him by himself. I sent him up and Raine ran and hugged him. Once in his lap, he informed Santa what he wanted for Christmas and where he lives. Haha. 

Raine has helped daddy decorate the tree, played with daddy’s holiday musical brewhouse, enjoyed treats from an elf each morning when he wakes up (counting the days down to Christmas) and made cute crafts at daycare. He also picked out presents for each of his family members at the Young Artists Craft Fair at the library.

This has been my mantra lately. I saw it getting shared on social media and it stuck in my mind. My greatest task is to believe that I can manage this all. Of course, that has meant letting go of actually doing “it” all, but I’m okay with that for once. Our social worker pointed out that she sees all women do this: They have families, jobs, personal interests and they think they can keep doing it all and add caregiver/managing an illness to the list. It doesn’t work out. It’s impossible! Something has to give. For me, it has been work. I am no longer on the schedule at the store in Mac, and my own business has been operating at a much slower pace. So I just keep at what I can, bit by bit. The occasional night out or glass of wine is soothing. Massages are a genuine God send. In the meantime, Dan was back to work as soon as his severe fatigue wore off. He is putting in shorter days but working nonetheless. And together we are trying to tackle everything-making To Do lists and taking naps when we can to have stamina for Raine. We are thrilled to have Jim and Char back for ten days. Everything is better when mom and dad are around, right? I am so grateful for them.

Monday, December 8, 2014

Thanksgiving 2014 Redo

We celebrated Thanksgiving 2014 with the Sherwood Seven –Matt, Gayle, Abbie, Sarah, Garret, Hannah, and Emma. We have so many great memories with them, ever since our first Thanksgiving with Matt and Gayle in 2004! We had just moved to Oregon two months prior and Gayle invited us to her home for the holiday. It became our tradition. Every year we have been together except for 2010 when we were in Sedona. This year, the kids stood up with Matt and Gayle before we ate to wish cheers and say that they were grateful for Dan. He probably felt funny in the spotlight, but cherished the moment, I am sure. It was so sweet. When we met the kids, Garret was close to Raine’s age. It has been amazing to watch them all grow up and become awesome young adults.
And, most importantly, the food was complete awesomeness. Dan was post chemo beyond three weeks, his brain swelling symptoms had abated, and he was relieved and ready for football and plenty of delicious savory food.

We spent Black Friday at St. Vincent’s for his 2nd chemo round. We both worked on our books and a friend, Brad, came by for company. He brought us snacks and coffee, too, for which I was SO grateful–It’s the little things, people! (The cafes in the hospital were all closed for the holiday, so there is ONE weekend we are now aware of where a major hospital in Portland does not provide coffee services. Oh my.) I ended up snoozing most of the day away in the recliner next to Dan. He kept teasing the nurses not to plug anything into me. And when they were finishing up with him and another family (we were the last ones) at the end of the day, he joked that he could just leave me there for the night. I woke up just in time to know that the delightful sound I heard was that of everyone laughing at something my husband said.
We ended November by doing the first Shine a Light event in Carlton, OR. Dan, Raine, and I went to Upper Park and lit two candles. I had informational materials, flashlights, and wristbands to share but with little time to spread word prior to the event, and Dan’s hospital stay changing the date, it was just us. We missed the other family that came out to join us but it was still special. We had a moment as a family that is written on my heart and I loved seeing all of the photos that everyone shared across the continent in thought of Dan and others who have been affected by Lung Cancer. Dan has been wearing his LCA band ever since, and when I see it, I think of this night. Thank you to all of you who participated.
December began pretty quietly as we adjusted to our new normalcy again with Dan’s brain swelling under control and finding our rhythm again, I guess, if there is one. I have found us focusing on Raine, trying to work and get household stuff done here and there–paperwork, cleaning, errands, etc. We’ve had some beautiful moments as the mornings have grown colder and our community here in Carlton has warmed up with holiday festivities and continued support for us. We are so grateful.

Wednesday, December 3, 2014

North Valley Road

The llamas are splendid
No rain to drench their coats.
They remain woolly and soft,
regal in posture.
I envy their quiet eyes
The Western sky is nature’s best white-blue,
a slow stretch above the horizon, underneath
a canopy of cottony clouds–
a pale swatch echoing stillness
The orchards are empty with smoke rising
from little piles of trimmings
The woods are stripped for winter,
but kind firs lend density
and a few trees have their moment–
Pears show their amber dressings
and a Red Oak cries out
a crash of joyous crimson.
Hay fields are quiet, green patches
folded upon themselves
with brown stitching
and the bare vineyards seem asleep
but their roots and trunks are ever vigilant,

by Leah Herzing