Blog Archives

(Post) Cancer (Caregiver) Feelings: Grief, Part 1

This is part of the series of posts that Julienne began back when she was diagnosed. They’re on Julienne’s blog and linked below. The ones I have done are below as well.

Anger

Fear

Gratitude

Isolation

The Dark Side

Parting Wisdom

Nervous

Round 2

Positivity

Cancer (Caregiver) Feelings: Yin and Yang

(Post) Cancer (Caregiver) Feelings: Hope

Strap in. This isn’t pretty.

Grief.

It’s a little word that packs a lot into it. Loss. Sorrow. Pain, both physical and emotional. Longing. Loneliness. Honestly, Grief is just too big for a blog post, which is why I added the Part 1 part to the title. It’s sort of a joke, since I don’t plan on doing a second part, but it’s not a funny one because there is just too much to say about grief, even if I just focus on my own. So what’s the point, you could rightfully ask. I don’t know is my truthful answer. I guess I need to say some things about grief rather than have them rattling around my head like I rattle aimlessly around my empty house.

Here’s the fun thing about grief, which isn’t fun at all, it’s the tragedy of grief – here’s the tragic thing about grief: It’s different for everyone. That’s essentially the first thing you read or hear in any book or discussion about the process of grief. It’s different for everyone. The moment when that sunk in for me, days after I lost the light of the world and the main reason I woke up every day happy to be alive, I came to one very stark realization about what those words actually mean.

I am so fucked.

Everyone in grief is just plain fucked. Because it’s different for everyone means there is no template, no procedure, no standard of care that works. There are a lot of commonalities, but no overarching principles or guidelines to say this will help you. “Therapy”, of course, is helpful, but that’s like saying “medicine” is helpful to the sick. As an abstraction, they are both true. But what form of therapy is the right kind? What approach is best? What should the focus be? Well, it’s different for everyone.

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Graduation (or, Freeeeddddooommmm)

This is the twelfth chapter of Love Song by Julienne (ft Cancer). The other ones are listed below because I felt bad about being lazy last time.

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

So much for managing two posts a week. These are getting tougher, so I’ll shoot for one a week. Anything else will be a bonus. Thanks as always for reading. I love you (*finger guns*).

There is an interesting phenomenon that seems to lurk around any long-anticipated event, especially one that took a lot of work to bring together. There is this high during and after, especially if it is a rousing success. Then, unfortunately, there is a depression of sorts that sets in. This thing that was a labor of love is over and done, and the higher the high the lower the low. Julienne had a day to deal with both of those conflicting emotions. Then, sadly, she had to turn around and look at all the plates that were wobbling and slowing down as she’d kept the Frost Plays one spinning.

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Luckily she had Lewis to help her study.

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A Dress and a Concert

This is Chapter 11 of Love Song by Julienne (ft Cancer). I’m not going to link to the others because I’m lazy, and also because it’s getting long, so if this is your first time here you might want to look at the other ones. Also, I apologize for the increasing delay between entries. It’s getting a little harder as we go, emotionally, but I’m going to try to do two a week going forward. We’ll see how long that lasts! Thanks for your patience.

***

There is a face and a noise that Julienne makes when she is absolutely 109% happy about something. If you’ve ever witnessed it, you know exactly what I’m referring to. If not, I’ll have to try to explain it to you. First, the face. The eyes are wide and beam with happiness, and are usually looking to the left. Her eyebrows are lifted as high as they will go, and Julienne has a master’s eyebrow raise. Her chin is lifted, her neck extends, and there is a big, delightfully goofy smile on her face. Next is the noise. It is hard to describe. Sort of a “ngh”, or maybe an “umh”, but it is a short, low noise. It is a gesture without intention or artifice, completely instinctive and reactionary on her part. It is, without question, my favorite thing in the universe, because it means that she is at the very height of pleased, contented, perfect happiness.

I’m lucky to have seen it many times. Julienne loves and expresses joy better than anyone I’ve ever seen, and that look was only one that appeared when she had something she really, truly, unabashedly adored. It is different than her surprised happy face, different than her one-the-verge-of-tears happy face, different than her fists-in-the-air-teeth-clenched-happy-rage face. It fills me with joy every time I see it. Happily, I have pictures that capture the moment, and I can fill in the sound, which I do every time I see them. But more on that later.

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Alantimes Day

This is the tenth chapter of Love Song by Julienne (ft Cancer). The other ones are listed below if you haven’t read them yet and chronological continuity is your thing.

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

***

After our first race together, Julienne and I hurried back to the apartment, showered, scooped up Lewis, and headed to South Beach for a mini staycation. We got a hotel for the night and spent the day at the beach. That evening, Julienne wore the dress she’d gotten for our engagement photoshoot that she was still planning. There was a clock tower in Baltimore that she loved that was accessible from the inside, and it was a popular place for things of that nature. We were so giddy that day, just so happy to be together and in love. In the evening, we took a stroll on the beach and Julienne was so happy that she was literally leaping in the air. I had to get it on video so I made her do it again for me. It will always, to me, be the essence of Jules, so full of light and joy and exuberance.

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(Post) Cancer (Caregiver) Feelings: Hope

This is not going to be a happy, uplifting, or fun thing to read. This is not part of the ongoing story of our love. The next chapter of that will be out next week, once I can make myself write it. Before I can do that, though, I need to write about this, like leeching some poison from my blood or letting off enough steam before the pressure builds too much. I just want you to know what you’re getting into. This is very likely to be a dark and disheartening look at grief and loss.

I wrote once before about my feelings on this cancer journey. I wrote it in May, 2 months before she would be placed on oxygen and we were given the news about how much time we had left together. These Cancer Feelings posts were a very big part of Julienne’s blog. She wrote well and beautifully about her emotions throughout her treatment. I’ll link them below if you’d like to visit them. They are worth it.

Anger

Fear

Gratitude

Isolation

The Dark Side

Parting Wisdom

Nervous

Round 2

Positivity

I didn’t plan on doing another one of these, but here we are. I’m going to talk about something that was important to us both.

Hope.

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Her Woods

This is the eighth chapter of Love Song by Julienne (ft Cancer) (another maybe working title) which is the love story that Julienne and I lived for five glorious, amazing years. In case this is your first time, the other chapters are listed below in case you’d like them in chronological order.

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

***

The ring was ordered. The parents were in support. Now we just had to wait patiently.

I coined a phrase a few years ago. I said it lovingly, because I love them very much. It is this: “The patience of a Gede.” It is meant to be an ironic phrase, because if any of you has spent any amount of time with a Gede, you generally will notice that patience is not one of the many, many virtues they possess. A long line? No. A delayed response for an important matter? No.

And, in Julienne’s case, an extended unknown wait for an item she really, really wants? Not just no. Not just hell no. I’m talking are you fucking kidding me with this right now? Is it ready now? How about now? Now?

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She already wanted to call our jeweler Christina on the Monday after we’d ordered the ring to see what progress had been made. I knew and understood the feeling and had already reached out. After all, I was planning to take the Gede name myself. I have slightly more patience than Julienne, but it is only to a small degree. I hate going to any place with a waiting room, even if I’m there two minutes. Doctors, dentists, oil changes, hair stylists – I avoid going for longer than I should because I hate sitting and waiting more than just about anything in the world (with all of the doctor’s visits and chemo trips Jules and I did over the last four years, we eventually got a little more used to it, but not very much. Any delay was met with a rapid rise in anger and annoyance).

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A Ring, and a Conversation

This is the seventh chapter of A Love Story, by Julienne & Alan, ft Cancer (working title, maybe?) which is the love story that Julienne and I lived, if you couldn’t guess. In case this is your first time, the other chapters are listed below in case you’d like them in chronological order.

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

(Before we launch into the next part of the story, I want to share a couple of texts from after Halloween about Becca’s backstory, It was something churning in the back of her mind for a long time, and it just cracked me up.)

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***

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Halloween with Becca

This is the sixth chapter of the as-yet untitled (suggestions welcome) love story that Julienne and I lived. In case this is your first time, a) I’m sorry and b) the other chapters are listed below in case you’d like them in chronological order.

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

(A brief note before we get started. I indicated in yesterday’s post that the last bunch of days have been very hard. That hasn’t changed. I’m hoping that I can not only write this, but that I can feel a little better by doing so. It may be a fool’s errand on both fronts, but I’m going to try.)

***

Halloween season, I would come to learn, starts in February. That would be the first time every year that Julienne would ask me what I was planning to wear for Halloween. See, the traditional holiday season would occupy her mind, especially Christmas, all the way through her birthday in January. After that, though, Halloween Season officially began. I would never know what I’d want to be by then and she would look at me in such consternation at my lack of forethought. Every year I’d remind her that the thing she told me in February that she was going to be would never end up being the thing that she actually was for Halloween. Every year she would tell me that it wasn’t the point.

Halloween is serious business for Julienne. Read the rest of this entry

The Song of Derenemyn, With Notes

(Note: this is not one of the chapters of our love story [for which I need to figure out a title]. It’s been a really hard past few days, harder than usual, so I haven’t been able to write the next chapter just yet. Saturday I woke up crying and basically didn’t stop, so I decided to just lean into the sorrow completely since it wasn’t abating. I sat and listened to the songs that she recorded throughout her life on repeat for hours, crying and missing her and remembering her and grieving hard over the fact that I can’t see her or touch her or converse or – you get the idea. I posted some things on Facebook to share her singing, including a bit from The Song of Derenemyn. I wanted to repost it again with some details about the song. A lot of it can be gleaned from the story I’ve told so far, but I wanted to add some notes about some other details. Love you all.)

The Song of Derenemyn is a gift in many ways, but also a literal one. For my birthday in 2016, Julienne gave me a CD with this song along with the lyrics printed on old-timey parchment-like paper. She’d written and recorded it for me, telling the story of us and our first year together in a way that was as magical and beautiful as she. It is my favorite song in the world. I have a daydream where the music she created for it gets turned into a full-blown instrumental to match her singing, but as it is, the song is perfect for me, just like Julienne is.

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Brioche French Toast

This is the fifth “chapter” of the fairytale love story I lived for 5 glorious years with Julienne Gede Edwards. It helps if you read the other ones first, probably.

Ch 1 – Meeting Julienne

Ch 2 – Finding Julienne

Ch 3 – A Kiss, and a Confession

Ch 4 – Of Spaniel Day Lewis, Parents, and Dothraki Love Nests

I do want to give fair warning, though. This one has a lot of unfiltered expressions of pain and loss. And if I’m warning you about THIS one, and not any of the previous ones, then you know it’s going to be pretty raw. It’s hard to think and feel these happiest of times so clearly and not suffer the backlash of sorrow and devastation of the present, so be warned. I’m not apologizing for them because I’m not ashamed of them, but I imagine this stuff can be rough to hear sometimes. Hence the fair warning.

As always, thank you for the love and support. It honestly helps more than I can express. I love you all, and also *finger guns*

You’re the best.

***

After Dothraki Love Nest Weekend, a couple of things became clear. First, that I was going to struggle to compete with this level of imagination, thoughtfulness, love, and execution of vision going forward. How do you buy a Christmas present for someone after this? What would be remotely in the league of romantic gestures? (Fun fact: a couple Christmases ago I suggested that we set a budget of $25 for each other’s presents to reset the standard, because we’d gotten on an ever-escalating scale of gift-giving like it was retaliatory nuclear strikes of love. The withering look she gave me was all the answer I needed. The Gift War would continue apace. She always won.) Read the rest of this entry