Love Song by Julienne (ft Cancer) Ch. 19: Party Planning

Sorry, once again, for the delay in new chapters. The last few weeks have, if anything, been harder than the ones that came before. Or they’re different in some way, at least, because the weeks before that weren’t really any fucking good either. There’s a depression that I can’t shake sapping my energy, my will to do anything besides sit at our house or at her site and numbly watch TV or play a video game. Projects are half-completed, things I need to do are put off until the next day, or the next, or forever and ever into the future I don’t really want to think about. I’ve cried and had meltdowns more and more often recently. I feel stuck in a web, or trapped in the dark, unable to find my way and exhausted. I miss Julienne so much.

But I’m trying to push past the lethargy, the desire to make Future Alan do it because Past Alan was a lazy dick and Present Alan is just trying to get through one more day. I want tomorrow’s Present Alan to look back at Past Alan and think, hey good job, maybe mix in a run or some weights next time, you lazy fuck, but at least you wrote something.

As I write this, it’s Valentine’s Day. Last Saturday marked 6 months since Julienne died. The day before, last Friday, a song got stuck in my head. It was only then that I realized the answer to a question Jules asked me many times: what is your favorite song? It was so obvious that it had to be that song running through my head Friday evening, and all day Saturday, and every day since. It made me cry as a kid the first time I heard it, for reasons I still don’t understand, but it was like hearing someone saying something that I thought only existed in my own head, something beautiful and yearning, hopeful and wistful, something that made me feel included in a way I don’t remember feeling before. (I was a “sensitive boy”, in the parlance of the time.)

That song is Rainbow Connection, sung by a fake frog made of fabric and foam the first time I heard it. Julienne knew how much I loved it. She ended up recording it as part of a gift to her father, the last song on the CD. The only copy I had was with her vocals alone, until last night when I found the one from the CD. I love both versions, but I might prefer the vocal-only one more. I listened to it last Saturday at her site, crying and missing her, and so grateful that I had it, to hear her singing my favorite song of all time, a gift beyond price. It’s only now that I understand what my Rainbow Connection is, the thing I was searching for, and it’s her. It’s always been her.

Here are both versions. You can decide which one you like more.

Vocals Only

Full version (she wasn’t entirely happy with the karaoke track she had to use for it, but she never found a better one)


Lil Lewis break. We don’t think he understood exactly what the Lewis Bumper was intended for. It makes sense that he would assume it was for him.

I wasn’t super happy with my last post. It feels rushed to me, because I think I was just trying to get past the Der Tag post and get my sweet pea out of the hospital (Julienne was delighted the first time I called her that and adored it way more than I could have ever expected. She was the sweetest of the peas). I hope this one turns out better. Only one way to find out.


The people who woke up in Julienne’s parents’ house on July 26th were not the same people from just a week before. Not her parents, not me, not Julienne. Perceptions, assumptions, plans, dreams – everything was changed. I remember laying with her in that bed in the morning of July 26th, holding her, talking to her softly, her head on my chest. How are you feeling, how is the pain, I love you, can I get you anything. We spent a long time like that, as was our habit, but it felt more – urgent? Important? – than before. It was the first time in a week we’d been able to wake up like that, holding each other, and now that the fragility of the time we had together, the unknowns that were now part and parcel of our lives, was made clear to us, that moment was something we didn’t want to end. It was a talisman, a way to ward off everything – if we could just stay there, in a bed, in each other’s arms, with the door closed and the outside world held at bay, then everything would be ok, we’d be safe.

But that’s not how things work, so eventually we stirred. Already Julienne had recovered her light spirit, for the most part, and the joy of being home, the place she grew up in, made a tremendous difference. She could laugh and make jokes, get excited for wedding planning, all of the things that made Julienne Julienne were there.

Of course, there was another side that hadn’t been there before, in all of us, but no one more so than Julienne herself. Fear, darkness, uncertainty, dread – a dark cloud was within her that could, from time to time, darken the sun of her magical whimsical spirit. I could see it in her when it happened, a subtle shift to her eyes and face when troubling thoughts surfaced, the way she would sometimes look at the world. For the rest of her life there would be times were the reality of her situation would intrude and the weight of it would press on her. When I was there, I could hold her and we’d cry together. If she was alone, she would text me, or often just get herself through it until I saw her again.


One of those moments. I felt a need to capture it.

Julienne’s spirit, though, was not easily daunted. Every time she would bend under the pressure, she’d bounce back, strong, brave, indomitable. The clouds could never cover her sun for long.

The rapidly-approaching wedding provided a distraction as full of joy and wonder as Julienne herself. Ideas and plans were made at a rapid clip. She was online constantly, searching through Pinterest, stores, incredibly detailed and intricate Google searches for a thing I didn’t believe could exist until she found it, triumphantly and happily. Cake tastings, flower visits, dinner reservations to try food for catering – all of it was being done at a pace that was incredible.

We also had a beach vacation to prepare for.

Every year, her family – parents, brother, sister-in-law, aunt, uncle, cousins, grandfather – would go to the Outer Banks (specifically, Duck) and stay together at a beach house in August. It was something she’d been looking forward to for months, and one of the things that worried her going into surgery. One of the reasons why the scarring and possible colostomy bag so worried Julienne was that she planned on wearing bikinis on August 8th. Waking up to minimal scars was a happy moment in the midst of a lot of pain for that reason. That’s just who Julienne is.

The next day, the 27th of July, was a Monday. I went into work that morning, making the two-hour drive back to Delaware to spend a couple of hours catching up my boss on how things were going and what I’d need to do. I was able to arrange the chance to work remotely a couple of days a week to reduce the drive time and to make sure Julienne was cared for, which was a relief. On that day is the first text I sent to her to remind her of medication:


This became how we did things. I was the one who set the alarms and reminders for her meds, who made sure they were where they should be and that we had enough. It continued right through the end. Julienne could be very focused on a task and miss taking them on time, so I just made sure to keep it in mind. As time wore on and her medication list grew, and especially after morphine was a regular feature, I didn’t want her wasting time and energy thinking about meds. I’d call or text to let her know it was time for whichever pills she needed to take. I still have the alarms I set for all hours of the day. It was never anything we planned or discussed, it was just how we, together and unconsciously, dealt with the shitty side of life.

After that, I went to the apartment to pick up some things Julienne wanted, clothing and things. This was an opportunity for me to learn just how little I knew about clothing. She texted me a list of things that included descriptors I had never needed to know before. Maxi dresses. Shirt dresses. Chiffon. Some I could work out, others were mysteries (despite her repeatedly and patiently explaining it to me multiple times over 4 years, I still cannot describe nor recognize what chiffon is, to her perpetual resigned exasperation). I have pages of texts between us from this day and one a few days later, when I was getting things for the Outer Banks trip, my bewildered questions and pictures of is this it and her explanations, clarifications, and context – the dress I wore to Red Lobster, the one I was going to wear for engagement photos, the one from ring shopping in NYC. Sometimes I forgot entire dressers (one was in a walk-in closet) and I would spend literal hours looking for ivory lace dress because it was important to me that she have the things she wanted. Not being able to give her something she asked for was something I never wanted to happen and hated every time it did happen.

On that day, the 27th, something else happened:


That day, and just about every day thereafter, Julienne pooping became a thing we celebrated. Through the rest of her too-short life, she would come out of the bathroom with raised fists and I would triumphantly throw mine in the air as well, celebrating the fact that she didn’t have an obstruction that threatened to kill her. There are times where we had guests who had no idea what had happened as we held our fists up and I said “yay baby!” before continuing the conversation where it had been interrupted without explaining anything. We celebrated every fart and bowel movement, because a lack of those things almost killed her before we ever knew anything was wrong.

By the time I got back, she’d completed a lot of wedding plans. More importantly to us both, she’d written her vows. Since we are both unreligious, and also deeply weird and nerdy and different, we knew prepackaged vows wouldn’t cut it. After I got home (marching in with everything she’d requested with an air of victory more properly belonging to a Roman triumph), I asked if I could see them, so that ours would somewhat be similar in tone and substance. Julienne laughed. No way. You’re on your own. I laughed too, because I wasn’t surprised. I needed more time to think of what I would say to the woman of my dreams on that day anyway.

We had the basics and principals in place (or so we thought). Sharon, Julienne’s mom, was going to be our officiant, and she would herself prepare the ceremony. Jay, her father, would walk Julienne down the aisle. Nathan, her brother, would accompany Michaela, his wife, as she carried their daughter Lunete as the flower girl, and then Michaela would take her place as maid of honor. Spaniel Day Lewis would be our ring-bearer, obviously, escorted down the aisle by Christian, the best man (in all things). Our original plans had called for a much larger wedding party, but paring the guest list down to thirty and keeping our original plan would have resulted in as many people in the wedding party as we had guests, so we settled on just a best man/maid of honor duo.

We knew where we’d be having it, of course. Julienne’s favorite place on earth, and the place where I’d proposed. We would be wed by the stream, then a reception would be held in a big tent on her parents’ front yard. We’d have wine and champagne, plus two signature cocktails and a whiskey cart with two selections of scotch (selected by me and Jay) and bourbon (from Julienne and Nathan). We’d have a gypsy jazz band (something I hadn’t heard about before but was delighted to find out about) called Hot Club of Baltimore (go see them, they’re great). Inside the tent would be a tree, an actual tree, which we called the Party Tree because we are Lord of the Rings nerds. The furnishings would be antique rentals from a place called Vintage Affairs, including a mismatched set of champagne coupes whose existence brought Julienne more joy than I can adequately explain (only a few things on earth bring Julienne more joy than a coupe glass. I’m proud I made the cut). We knew a honeymoon was out of the question (chemo starting just days later), so she started planning it for Labor Day Weekend in 2016. There were still some unknowns, but the bones were in place.


Our aisle.


Julienne’s proof-of-concept, featuring parents.

On the 30th, Jay, Nathan, and I went to have suits made for the wedding. This was an experience entirely unfathomable to me. This was not a tux rental, nor an off-the-rack suit. We were going to a tailor to have bespoke suits made for us, and I didn’t even know before that day what bespoke suit meant. It was one of the wedding gifts from Jay. I sent pictures to Julienne of fabrics and ties, and we had already agreed on a light gray color scheme, but more choices than I would have liked were left to me. She told me things she liked but left the final decision in my (now sweaty and clammy) hands. I had no idea what I was doing, so having Jay and Nathan on hand to give sartorial advice was a godsend. It was a good day.

The flurry continued in the days we had remaining until August 7th, when we’d begin the drive down to Duck, North Carolina. On the 30th, as I was getting measured, she found the tree for the tent. I went back to work the first week of August before the trip, so she spent almost all of her time making preparations. On the 3rd she visited the florist (Crimson and Clover) and planned out an incredible Riviera honeymoon that included a James Bond stop at a casino in Monte Carlo (with tux and gown, of course). Two days later she found her veil (she has very exacting specifications). On the 6th, she found her wedding gift to me, plus we visited the photographer Julienne had found online that seemed to match her vision (and oh boy did she ever) as well as a dress for Savannah to wear (more on that in a moment).


The Party Tree

During that time, Julienne also had a surprise bridal shower, on August 2nd. The plan called for Savannah and Gabe to take Jules and me to brunch, then head back up to her parents’ house where everyone was surprise her. I was not part of the plan, so I had no idea (to be fair, if you do want to surprise someone, it’s best not to tell their partner. This shit always comes out). For Julienne and I, it was just a time to have fun. Gabe and I busied ourselves with the make-your-own-Bloody-Mary bar (which to me is an adult chemistry set of fun experimentation and sometimes lamentable results) while Jules and Savs talked, which is a thing that possesses a weight and momentum of its own that is not easily overcome, like attempting to turn a cruise ship – you had to start early if you wanted it to turn in a certain direction, like leaving brunch. We were there for a couple of hours and hadn’t even ordered food yet. That was when I got a text from Michaela, who was organizing the shower and wasn’t able to reach Savs. I wasn’t much help at that point, so eventually Michaela had to inform us that a) all of the guests were there and b) the food was getting cold and c) we needed to get our asses up there.

We never even got a chance to order food. In the three hours we were there. We talk a lot when we’re together.


Michaela, Julienne, and Savannah. Jules had such a good time.

On the 5th, one crucial change was made to the wedding plans. Julienne wanted Savs, who had been so incredibly supportive throughout all of this, to be in the wedding. It was an obvious choice, as well as who should be also brought in to balance out the sides. Since Nathan was already going to be going down the aisle, it was easy to have him stand by my side, and I was proud to have him there.

All of the planning and running around would have been overwhelming to a mere mortal. Of course, Julienne was not such. My elf queen was also looking for houses near her parents’ farm. Cancer had changed our perspectives a lot, and really brought the importance of her family to the forefront of Julienne’s mind. We wanted to be close to her family, especially since her parents, brother, niece, aunt, uncle, grandfather, and cousins all lived within a 30-minute drive. It was an easy choice to make.

Finding a house, on the other hand, would prove to be a challenge.

But that was a challenge for another day. We had a beach to lay on.

About Alan Edwards

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

Posted on February 14, 2020, in The Real and tagged , , , , . Bookmark the permalink. Leave a comment.

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