The Hospital, Part Three: The C Word (the Bad One)

This is the sixteenth chapter of Love Song by Julienne (ft Cancer). The other parts are listed below.

Prologue – Julienne
Chapter 1 – Meeting Julienne
Chapter 2 – Finding Julienne
Chapter 3 – A Kiss, and a Confession
Chapter 4 – Of Spaniel Day Lewis, Parents, and Dothraki Love Nests
Chapter 5 – Brioche French Toast
Chapter 6 – Halloween with Becca
Chapter 7 – A Ring, and a Conversation
Chapter 8 – Her Woods
Chapter 9 – Christmas, and a Chase
Chapter 10 – Alantimes Day
Chapter 11 – A Dress and a Concert
Chapter 12 – Graduation (or, Freeeeddddoooommmm)

Chapter 13 – The Joy Before the Storm

Chapter 14 – The Hospital, Part One

Chapter 15 – The Hospital, Part Two: Farts Save Lives

(No, I don’t know why the spacing is off above. No, I don’t know how to fix it. No, I don’t care. Much.)

Julienne and I had three long-running arguments throughout the entirety of our relationship from which neither one of us was willing to back down. They were, in ascending order of importance, which one of us was the luckier one to have the other, which of us was the greatest, and, the big one, which one of us loved the other more. We had the arguments through text and in person, by ourselves and in company, for as short as one or two back-and-forths to a hotly contested battle that would last an hour. We each felt very strongly that we ourselves were luckier to have found someone so incredible and who loved them so much. We each knew, beyond a shadow of a question of a doubt, that the other was the greatest person of all time. And we especially each knew that it was impossible for anyone to love anyone else more than the love we felt for the other. It was a fun game for us, trying to come up with ever-more clever (and not-so-clever) arguments (see, if you love me more, then you truly are the greatest person ever, and therefore I am the luckiest).

It was sweet of her to try, but everyone knows that a) I was the luckiest and b) she was the greatest and c) I think we loved each other as much as is possible for one person to love their partner, so that one was a tie.

I try to hold onto things like that, even though it hurts so much that we can’t keep the arguments going. When someone is as lucky as I was to have her, the greatest person who ever was, and who was as loved and was able to love as much as we did, the aftermath is fucking brutal. People use the words “I can’t imagine” with me a lot. I understand. I have a very good imagination, I knew the score, and I knew what I had. But even I couldn’t imagine how devastating this is. We knew it would end someday, but neither one of us expected it to end when it did, even though we knew pretty well exactly when it would (and the estimate was sadly spot on). Still. I think we both held on to the One More Day hope, because without hope we had nothing but fear and dread.

As I write this, Thursday December 5th 2019, it’s been exactly 17 weeks since Julienne died. 119 days. It’s already been the longest winter I’ve ever endured, and winter doesn’t even fucking begin for another 2+ weeks. This is hell, and Hell is colder than the empty spot on the couch, the wind shearing through the bare branches at her site, the unheld hand, the silence of an empty house. Hell is cold, and I am in it every second of every day.

(Thank you for reading this. I’m sorry it isn’t cheerier. Here is a slo-mo video of Lewis being let off his leash to run upstairs to our apartment.)

***

As anyone who’s ever stayed overnight in a hospital knows, it is nearly impossible to get any sleep. Vital signs are checked every few hours, nurses have questions or meds, doctors make 6 am rounds, everything is uncomfortable, and it’s generally an environment strategically designed to be as unrelaxing as possible. We slept fitfully, Julienne because she was in pain and had a tube down her nose and throat that is exceedingly uncomfortable for talking or swallowing, me because I was sitting in a chair, and both of us because we were scared. It was our second straight night there, with neither of us getting any sleep of note the first night, so we were exhausted.

Lucky for us, I think we both reached a maximum exhausted state that still meant we could function, think, and process information. For me, it was an oddly calming feeling. My eyes felt like two clumps of crumbling sand, but I learned I could function remarkably well in that state, something that would sadly continue to come in handy over the coming years. Julienne didn’t talk much because of the tube, but we would whisper together and I could hold her hand and talk to her so it was enough.

Julienne’s parents made the hour-and-a-half drive from their house to the hospital before 6 am, so they could hear what the doctors had to say as well. We knew that she would be getting a colonoscopy at some point that day, Wednesday the 22nd, which we hoped would give us more information (and it’s a little mind-boggling to me still that it took 5 days from our initial visit for it to come up). We met the doctors and they didn’t have more to say other than she would be getting the colonoscopy. After they came, I left the hospital to let poor Lewis out of his crate to go to the bathroom and run around a bit while I showered and grabbed some food. I headed back to resume my post, next to my love holding her hand.

It took until afternoon before she got the colonoscopy, for whatever reason. Luckily, Julienne was still gassy so the threat of a gastric rupture was unlikely, but everything still seemed to take forever to get done (and that’s a thing that hasn’t changed in 4 years). She was done around 3 pm. We needed to wait for the results, and SDL needed to be let out of his crate again, so I went home just before 4. Once again, I gave him some time to run around while I made some food, a French bread pizza, based on my sudden vivid recollection. I finished, put Lewis back in his crate, and was ready to head out again, when I got this text:

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I was driving when I got the last line of that text from her. Something, and I don’t know what, drained out of me when I read those words, and didn’t ever come back. I was terrified, but I told myself it can’t be that, not her, not now, it’s impossible. I had done that repetition before, when my mother told me she’d found a lump in her breast and needed to go get it checked out. No, it can’t be, that’s impossible. How relieved we would be when it all turned out to be a big scare, that Julienne would be fine, and the world would continue to turn in a sane, logical manner, or as near as it ever does.

I returned to where I was meant to be, beside Julienne, holding her hand. We talked to the doctors who informed us that she had a complete blockage at the turn of her colon by a mass they did not like the look of, and they’d taken samples of it to be tested that would take a few days. In the meantime, they were going to open Julienne up, remove the section of colon, and put a stent there to reattach the two sections. It was a lot of information to process and a lot of realities to confront.

Meanwhile her dad worked on getting her a room at Johns Hopkins. We couldn’t just drive there, and we wanted the Hopkins folks to be able to talk to the Christiana team to get all of the information they had available. Her parents didn’t want Julienne to get the procedure done anywhere but one of the best hospitals in the world, and the whole ordeal we’d been through at Christiana had Julienne and me both skeptical of staying there. Getting a bed took time, but he did it. He used every contact he could think of that might be able to help, and he was able to leverage that into a bed. (I’ll never be able to thank him enough for that.) We would be leaving the next morning, the 23rd of July. Julienne was scared, but hopeful. She always was. Any bad news that she was given would knock her back for a bit, but she came back stronger than ever. Every time.

(Her resolve and strength is, without question, greater than any I’ve ever seen. Julienne refused to let anything beat her, change who she was, or define her in any way. I will always be awestruck by the qualities that she showed in the hardest and darkest of times. She is the very definition of strong, capable, indefatigable, graceful, kind, brilliant, magical, and beautiful. I ache for her loss in a very personal way, because she chose me to share her life with her as her husband, but I mourn for the world she left behind and the lives she touched, and especially for those lives she didn’t get a chance to make better because she was taken from us all too soon. Julienne was strong enough to keep me going through the worst times of my life, and she still keeps me going today when every part of me screams out for an end to the pain. I will never love, nor miss, anything in this world or the next more than I love and miss the extraordinary incandescence that is Julienne Gede Edwards.)

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Long otter break.

I went home that night to let Lewis out, and also to pick up some things she wanted to have in the hospital. We had no idea how long she would be in Hopkins, so she wanted to have things around her that reminded her of better things. Her favorite hairbrush. A framed photo from her birthday that year. An illustrated book called Mother/Daughter Tales (I came across this a few weeks ago, when it was still warm enough to stay at her site for a while, and read to her from it. I didn’t remember her asking for it in the hospital until I started researching the hospital time). Her black silk robe that she often wore when I came home from work (usually because she’d been in the tub while I was gone). The photo album of Lewis she made. And finally, Cami, her stuffed animal puppy, old and battered and loved, with a sewed on patch for a nose and a replacement wooden eye that Lewis had chewed as a puppy. (Many nights since she left, I sleep with Cami held tight in my arms, knowing that once upon a time my beloved Julienne did the same thing when she was alone, or scared, or in need of comfort. I am all three.)

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We spent another night together in the hospital, our last at Christiana. I got blankets this time, which was nice, but sleep was even harder to come by. The C Word, the one a thousand times worse than the other (which was one of Jules’ favorite expressions), loomed large. We were both in disbelief. The exhaustion and the circumstances put a weird sheen over everything, like how things look like in a dream, a little hazy and strange and out of place. We talked, trying to spare her throat from the NG tube but unable to be silent. Everything’s going to be OK, I said stupidly.

I left in the morning again to let Lewis, who was a complete super-trooper through the whole ordeal, out of his crate while I gathered a few more things we might need. I went back as she signed the transfer papers, and not long after they took my love to an ambulance. I kissed her before she went in, since I was going to be following in my car, and we drove the hour or so to Johns Hopkins hospital in Baltimore. It was Thursday the 23rd of July, and over the course of that day and into the night and the next morning, everything we thought about the course of the rest of our lives was destroyed, with the exception of one thing.

We would be together.

Till death do us part is for quitters.

About Alan Edwards

Former cancer caregiver. Husband of the most magical and amazing person who ever lived.

Posted on December 6, 2019, in The Real and tagged , , , , . Bookmark the permalink. 2 Comments.

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