Love Song by Julienne (ft Cancer) Ch. 18: Aftermath
I apologize for the long break between chapters. I know you guys will say it’s OK and there’s no need to apologize, but I’m also kind of apologizing to myself. Relating as much of Julienne’s story as I can is important to me and I’ve let myself down by not rallying to face the challenge. I’m not taking myself to task too harshly – I’m being as kind to myself as I possibly can – but I’m also trying to hold myself accountable, so I’m going to explain what’s been happening.
(P.S. – This intro is really fucking dark and depressing without much in the way of uplift. If you aren’t in the mood for it, skip down to the otter break where I pick up from the past again.)
There are a couple of reasons for the delay. The first one was related to the time of year. The holidays were a big challenge to get through, since they were super-important to us and we had a lot of incredible memories around them. Her birthday following shortly after extended that holiday period as well. I wasn’t really able to do much of anything around that time besides keep moving forward. I still haven’t been able to open the cards or presents that were sent to me. I’m trying to get there.
I did receive a lot of support during that time, for which I’m grateful. It was really hard to get through. I just kept my head down and pushed through, figuring that things will improve if I could just make it past her birthday with my sanity intact. Of course, I was wrong. The day after her birthday felt worse than anything, because then I was just facing an endless sea of days without her stretching ahead of me forever. There is no reprieve in sight. It’s just an endless slog of days to get through, a struggle without reason or reward. In fact, this is fairly common for people with depression. The “suicides spike during the holidays” thing is actually just as much, if not more, of an issue after the holidays, when the bleak long winter ahead without respite grinds people down. So if you are worried about folks, now is a good time to check on them too.
The second reason for the long break was where my head was after writing Der Tag, specifically the part where I had to tell Julienne that she would never have biological children. Thinking of that moment, one of the main reasons why I refused to let myself go back to that day before I wrote it, reminded me of another moment, much more recent. Julienne received the two worst pieces of news in her life from me. I was the one who had to tell her about the loss of any possibility of having our children. I also was the one who had to tell her she would be dead in a few days, while she was in hospice.
Julienne was asleep when the doctors came in to give us the news. They told me and her father that she would almost assuredly not last the week. Then they left, apologetic. I just remember sitting there with that news, this burden of information shifting from the doctors to me. I asked the nurse a few minutes later how Julienne should be told, and she said it would be best coming from me. In the days after she passed, I was told that if she had to hear that news from anyone, then Julienne definitely preferred getting it from me, because of the trust and love and bond we have. I don’t disagree necessarily. If the positions had been reversed (and every day of my life since July 18th 2015 I have begged for the positions to be reversed), I would have wanted to hear it from her, because she would have delivered it as I did, directly but with instant comfort available.
But it is one fucking hell of a burden to place on someone, to tell the person you love the worst possible things they will ever hear in their lives. The moments before getting the words out stretch forever, a long pause on the brink of the biggest dive into an unknown darkness, where I know this horrible information and the person I love most in the universe doesn’t yet know, and I have to let the words come out after I’ve had to sit there alone and come to terms with it in some way and tell the love of my life that she is going to be dead in a few days. I will never ever forget those two moments, the only twins we ever had, the day our normal life ended and the hope of our children gone, and the day when our life together was just about to end forever.
I still feel that burden. I carry those two moments together with me every day, seeing the hope in my beloved’s eyes die because of what I’m telling her, the whispers of I’m sorry, I’m so sorry, I love you as I hold her and we cry and cry and cry, and I cannot fucking tell you how hard it is to type these fucking words right now and I just to tear things apart and scream at how fucking unfair all of this but nothing is fucking fair so get up, brush your teeth, shower, go to work, and when people ask how you’re doing it is your fucking social obligation to comfort them and tell them everything is O-FUCKING-KAY because that’s my job every fucking day to go forward because that’s what I’m fucking supposed to do and I’m not a fucking productive member of society if I fucking don’t do it and here we fucking are.
So, yeah, that’s what’s been going through my head since the last chapter. I’m tired, and this burden is really fucking heavy, and I’m ready for a fucking otter break.
Julienne certainly demonstrated a considerable amount of strength and resiliency over the course of her too-short life. On Friday the 24th of July 2015, just hours removed from learning that she had cancer, having her insides literally rearranged, and losing her chance to have biological children, she started wedding planning. Wedding re-working, to be more accurate. She’d been planning her wedding almost her entire life, had gotten a binder full of ideas and checklists from the moment we got engaged, and scooped up bridal magazines at every turn. Now, though, she needed to get everything ready in 43 days. Not long after our mourning period, she had a smile on her face and was close to her normal buoyant self. I don’t know where she found the strength to do that, but I think it was just a testament to the person she is: indomitable and indefatigable. She was making jokes and smiling and chatting, and as she would do for the next four-plus years, she carried me through it. (She still does.)
I knew a little bit of what may lie ahead of us. My mother, Dottie, was diagnosed with breast cancer when I was 22 or 23. She passed away when I was 27. I was working with her throughout that time and lived close to her, so I had an idea of how things were. She did a too-good job of keeping a lot of it to herself, however, in an effort to protect her children from pain, as she’d done, as best she could, for our entire lives, so there were aspects of her treatment and dealing with it that I didn’t know. Also, I didn’t want to believe that anything truly bad could happen to such a good person. It did, of course.
So when I let Julienne know that I wasn’t going anywhere, and that I wanted to be with her forever, I did, to one degree or another, know what I was getting into. At least, I had the semblance of an idea. Even if I didn’t, though, there was no way I was going to walk away from her. I fell in love with Julienne so quickly and so deeply that, if she’d been diagnosed a week after we got together, I have no doubt I would have stayed by her side. The love, the protectiveness, the bond we shared, all of those things only got stronger once they became under threat.
We had the one thing that carried us through every single day until August 8th, 2019. We had hope.
Shortly after we mourned the loss of our biological children, we discussed IVF and adoption. We decided then and there that we would try IVF first, and if it failed we’d look into adoption. We believed, and were encouraged to believe, that these would be viable options for us. We comforted ourselves that treatment options were expanding and improving every year, and since she was young and otherwise completely healthy, that she had a great shot of finding a long-term treatment that would work. I told her, as she sat up in her hospital bed, scribbling in her composition book and flipping through bridal magazines, that she would still outlive me. Julienne would smile at me and remind me of my promise to her: that I would never die.
Her composition book. The tabs were for the names on the seating chart, so she could move them around.
We discussed ideas for our rapidly approaching wedding. The first thing Julienne wrote down, the first words in her book, was a list of names that absolutely had to be invited. We’d been looking at 150 or so people before, but we knew we had to pare it down as much as we could. We had to pick just 30 people to join us for our wedding day. It was brutal. People that we’d known for decades, people we loved, family members – there was no way to include them on our special day. It was painful. We had to put out a message on social media letting people know that, while we wanted so many more people there, we couldn’t include them all, and begged them not to be hurt or slighted. We promised that we’d have another big wedding celebration in the future that would include them.
(Like so many things, this never came to pass.)
As we scribbled and brainstormed, I took care of her. I’d been doing it since she was in the hospital, but it had become much more in the forefront of my mind. I watched what the nurses did when she needed to get up with her “leg warmers” as I called them – the calf sleeves that help circulation for the bedridden – so that I could help her to the bathroom when necessary. I checked her water cup periodically so I could get it filled before she ran out. I paid attention to her face and movements to see if she was feeling any discomfort. Jules started calling me Lawrence Nightingale and giggling in delight every time she said it. It gave me focus, and in a way a purpose. The only thing in the world that I wanted was to love her, to be with her, and to take care of her, to the best of my ability and with everything I had.
(At some point last year we were talking about the things we were proud of in our lives. She had a good list of things she was proud of, all incredibly well deserved: her dual degrees, passing the bar the first time [and after chemo no less], her work as an advocate, her family and her relationship with them. I told her then, and it’s still true, that there is only one thing in my life that I am proud of, one single thing, and it is my role as her caregiver. I will never love anyone as much as I love Julienne, and making her life better in any way I could for as long as I could is the only thing I’ve ever done that I feel has any true value. I still try to take care of her even now. I take care of her site as best I can, making sure she always has new roses every day and fresh fairy berries every week. I take care of the home she made and the puppies we raised as best as I can. And I do what I can to make sure she isn’t forgotten. “If a writer falls in love with you, you can never die” was a quote she liked, and I am typing these words right now so that you know Julienne Gede, and you’ll remember her, and maybe you’ll tell someone else about her, and in that way I’ll have done everything I can to make sure she lives on, forever, long after I’m forgotten. It’s the only thing I want to do now, besides lay down beside her and find where she’s waiting for me.)
The doctors were pleased with her recovery. Dr. Fang told us that she was going to refer us to an oncologist she thought would be a good fit for us, someone who specialized in palliative care and who focused strongly on quality-of-life, but who was also actively involved in clinical trials and new developments. In fact, they told us that Julienne would be able to go home the next day. That news cheered her up considerably. She was tired, missed her Lew, and just wanted to be in a real bed.
Sure enough, almost exactly 48 hours after our arrival at Hopkins, we left. Her brother stayed at her parents’ house getting it ready for us so we didn’t have to go back to Delaware. Stairs were going to be a problem, so my apartment was a no-go for a little while, and being in her childhood home and being around her family had a lot of appeal to her. When we arrived, he had a bedroom set up in the first-floor living room, complete with bed, but more importantly, a very special item to protect Julienne’s tender tummy from exuberant puppy leaps: the Lewis Bumper 1.0:
It took just a single week, from July 18th to July 25th, to completely change everything about our lives. We were devastated, in mourning over the loss of the children we thought we would have, her career plans utterly derailed, facing the prospect of chemotherapy in six weeks, and in total bewilderment over how this could possibly happen to a healthy 26-year-old woman.
We were also happy, completely in love, and getting married on September 5th, 2015, in front of the people we loved most in the world.
Here are some more pictures from her composition book. One day I will assemble a large shadow box for items like this. I owe her that much. And everything else I have.