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.
Aside from the actual holiday, so many things made the week hard. This 3rd round, more side effects have appeared. Certain chemo drugs attack all fast-growing cells, not just the tumor cells, including –most commonly– cells of the skin, throat/mouth, and stomach/intestines. One of Dan’s drugs does this, so we are now seeing sores in his throat, increased gastrointestinal pain and constipation, and dry skin. In other ways he has changed as well. He is as cold as me and loses his libido. I share this only to paint an accurate picture of his condition. Trust me, it is not common for the doctors and nurses to hear typical patients (or the patients’ partners) comment on libido with advanced lung cancer. Again, we set ourselves apart! But honestly, this is a part of our relationship, and Dan’s health, so I have to acknowledge these changes. It all contributes to a sense of loss, panic, unease, or fear for me. How are you to understand what I feel if I can’t tell you about every change? And every tiny change feels monumental. I have never been on this path before. Nor has Dan; gentle, strong, sweet, easy-going Dan. He has never been ill. This is all completely foreign to him. I desperately wish it didn’t have to be so overwhelming. I believe he handles it all in stride. I believe he is far more emotionally well-adjusted than I am. It is his way. But I always project my emotions onto him and begin wringing my hands over how I think he feels because it is how I feel. And I forget to ask what he wants or needs, and I try to be an all-knowing, enlightened goddess. I adjust my strategies accordingly: I mother, I don’t mother. I joke, I don’t joke. I push on hard topics, I let go. I am dancing around it all.
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.
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.