Soaking the midnight songs in the half light or real life
I just want to make believe
Given hope in the form of a Christmas light, no real life
I just want to make believe
Frightened Rabbit, “No Real Life”
It started on the plane trip out. I had been staring out the window and contemplating- as many of us do- how all of the tiny lights kept getting smaller and smaller upon take-off. First, tangible trucks, cars, and buildings. Then just patterns of light. White lights lined up one way, red lights lined up the other. Ants marching in to the rhythm of the commute to their workplaces on a Monday morning. Before the sun had even crested up over the horizon, the lights were busily on their way toward a fruitful day of productivity. I, however, was not. I was on my way to vacation to Kauai, HI. I was bound for far out into the Pacific. Far, far away from real life. And, I was hoping, far away mentally from my cancer.
But then the plane shook. Just normal turbulence. My stomach soared above my abdomen for a moment before settling back down again into it’s normal place of residence. And then? That familiar pain in the right lower quadrant. My tumor was getting angry. It was time for my pain medication and for a mental trip back to reality. I drifted from excitement over the trip of a lifetime back to familiar fears. Fears of a tumor growing, seemingly unchecked, and ready to steal away any number of things that are important to me. Fears that the pain might keep getting worse once I get back from my trip. Fears that my surgeons might not be able to or might not want to operate. The fear lasts longer than it takes for the Oxycodone to wipe away the pain. It dulls, but lingers underneath, even as I stand out on my hotel balcony looking out at palm trees, swans, and the beautiful ebb and flow of the ocean. It did go away later that night, and for the most part stayed away.
For those concerned that I let pain and fear overcome and dampen my entire vacation, I will stop right now and assure you that it did not. In fact, I was able to live without it during the vast majority (90-95%) of this trip. I relaxed. I was happy. I free-floated away on an inflatable raft in a saltwater lagoon. I laughed with pure joy at a school of dolphins racing our catamaran. I felt the current of freshwater streams rushing downhill from the hills and mountains and into the ocean tide. I gasped at the beauty of Waimea Canyon and the Na pali Coast from air, land and sea. I enjoyed local cuisine. I soaked up the sun. I looked upon the vast Pacific Ocean- the same view that my husband had seen 23 years earlier when he decided that he wanted to spend the rest of his life with me- and got swept up in the beauty of it all. There were more of these moments than I can count. It truly was my trip of a lifetime.
But in the in-between, there were other moments. Moments where I once again got behind on my pain medication and found myself curled up in a ball in the hotel bed waiting for the pain to pass. Then there was receiving a phone call from the Cleveland Clinic notifying me that my consult with the colon surgeon- the one that I had painstakingly arranged between the visit with the liver surgeon and oncologist on the same day- would need to be rescheduled. When I had already waited too long to see him. When my husband has to take a day off of work for each 3.5 hour journey there. Just another reminder that what qualifies for me as a crisis doesn’t register as even a priority in the eyes of my highly accoladed specialist.
Then there was the dinner where, after a few days of not really speaking of the big IT, the inevitable finally came up in conversation. With vacation allowing for rare second week away from chemo, I let a few drinks flow and let the tears fall out with my words. Soggy words of sadness over the reality of having to lose everyone, and to not get to be a part of their futures. The waitress must have wondered the reasoning for the tears in paradise because she came back and gave us a free dessert.
And finally, there was this occasion- the one where I realized about ten minutes into my once-in-a-lifetime helicopter tour of Kauai that my ostomy bag has burst and was leaking. I spent the the next hour of the tour trying to relax and enjoy the scenery despite the knowledge that my stoma was defecating all over my underwear, shorts and t-shirt through my ostomy. I’ve had this happen before, but never in such close quarters. And never when I can’t excuse myself to take care of it.
The most surprising part is that despite all of that going down, I was somehow still okay. I was even better than okay because I was able to compartmentalize that part of my brain to the point that I was in awe of the natural beauty and enjoy the tour. I could have let this consume me and ruin my entire day. But the truth is, I simply can’t afford to do that any more. This tour was too valuable and the day was too precious for me to let that happen.
I used to let the potential for public humiliation influence my mood a great deal. Now it barely shows up on radar. Especially when it comes to things that i literally have no control over. As horrible as it was, I didn’t cause it, and in that time and place I also had no control over it. So I put it in it’s place, downplayed it, and focused on the beauty instead.
Let that sink in for a minute. I was covered in my own feces and still able to redirect my thoughts to the awe and beauty of Kauai.
It’s the perfect scenario to describe how much my perspective on life in general has changed since my diagnosis with this terminal disease.
From great heights- like the ants on the highway- big problems become much smaller. This wasn’t something that would put me in the hospital, so I did my best to not call attention to it. And everyone else? They were also so focused on the beauty that they didn’t notice either. Fortunately, the free flow of air through the helicopter cockpit eliminated all noticeable odor. There were no medical evacuations, early ends to vacation, changes to my ability to use chemo, or anything else that could threaten my life.
I CAN clean myself up and change my clothes. I CAN’T change or clean up my prognosis. I CAN’T make it so that I won’t die and leave my husband and kids behind.
So it was a SMALL problem. And it was an (almost) perfect day in paradise.
As we boarded the plane and traveled back from vacation, I regretted leaving behind the fantasy and the beauty of it all. But I also missed my kids. There is no comfort substitution for the smell of the tops of their heads, and the feel of their arms around mine. We left Kauai on a Monday evening, and arrived in Ohio on a Tuesday afternoon. I looked out the window to see the same tiny cars on highways. Red lights one way, white lights another. That familiar rhythm. Ants marching home from work to their families, anticipating the mundane paradise of a welcome home hug and a kiss.