Blog Archives

(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.

Read the rest of this entry

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?

giphy (3).gif

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).

Read the rest of this entry

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.)

screenshot_20191004-093520777834114473153599.png

screenshot_20191004-0936281770210930695295315.png

***

Read the rest of this entry

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.

Read the rest of this entry

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

Of Spaniel Day Lewis, Parents, and Dothraki Love Nests

This is the fourth part of the fairytale I’ve lived for 5 years. The story went in directions we didn’t expect or want, but it was still our fairytale.

That weekend with Julienne were the best and happiest days of my life up until that point. Since she’d come up on a Thursday, I had to go to work the next day which was brutal and took forever to end. But it was worth it for the sight of her when I got home. It’s an image that seared itself into my brain like my memory used a cattle brand. I can pull it up anytime that I want it:

I come down the short hallway inside my apartment door and she’s standing there, waiting, like a femme fatale from a black-and-white noir film. She’s in a long black satin robe that almost looks like a wrap dress. Her blonde hair is parted on one side and wavy. She’s got on a beautiful smile that looks like the promise of an oasis after a decade in the desert. In each hand she’s got a glass of bourbon. “Hi baby,” she says, the words as soft and smoky as the liquid in the glasses. She holds out a drink and I take it, then I set it on the counter. She’s in my arms and we’re kissing and right then I know that all I want out of life is to come home and see her every day for the rest of my life.

It’s been five years and eleven days since that moment. It was my real life. It happened to me. I felt like I had to be in a dream then, since the real world could never be this good. It feels like a dream now, too, all of it does, a dream I was so unspeakably lucky to live through, all the greatness and joy and wonder and happiness that life had to offer was right there in my arms for 5 years. The pain and sorrow that is now my every day is worth it, because in September 2014 I became the luckiest man alive. We found each other.

Read the rest of this entry

A Kiss, and a Confession

[Warning: the beginning of this post contains emotional content unrelated to our continuing love story. If you’re just here for Part the Third and have no wish to hear emotional rambling from Yours Truly, skip down to the part below the cartoon. If you missed the first part it is here and the second part is here.]

Before I get started on the next chapter of our love story, I just want to give all of you a giant thank you. Writing these stories is very cathartic and healing for me. However, the process is very bittersweet and draining. Spending time rediscovering these old memories and stories is joyous, but the fact that I can’t hold her or be held by her or – well, the loss becomes more present after I leave the writing bubble. Doing this takes a lot out of me. But the response and support you all have given me throughout has made a real and tangible difference.

When Julienne died, I no longer had a purpose. I don’t mean that I had purpose as someone who took care of her as a person with cancer; I had purpose for the first time in my life the day we got together. My purpose was to be with this amazing person, to support her and her visions and dreams while getting support from her, to see every day and share it with her. After she was gone, I had nothing. I wanted to be able to write this story, all of it. I wanted to collect all of her writings on cancer, published and unpublished, and put them together so another young person afflicted by it could find it twenty years from now and see that they aren’t alone and gain a tiny bit of comfort. I wanted to do those things. But I had no idea if I was capable of doing it in a way that was good enough for her, the way she deserves them to be.

Meeting Julienne was a test of sorts. Could I tell this story in such a way that wasn’t just depressing, or boring, or cloyingly syrupy sweet? In short, could I tell it in a way Julienne would have liked to read? I’m grateful that I can say that I think it is good enough (barely – it should be better, but perfection wouldn’t be good enough). Your support has convinced me that it is. This week, I rediscovered my purpose in life, and that is to keep moving through it by telling her story, our story. She always said that if a blog post or Instagram story helped one person – just one – going through something, then the effort was worth it. I hope this helps someone today, and tomorrow, and ten years from now, and forever. I’m going to finish this, the whole thing from its fairytale beginning to its fairytale ending, as openly and honestly as I can, with all of the beauty and ugliness of love and cancer and life that I can put forth.

Thank you for helping me find my purpose. I love you.

bnmg76giaaakpfc3786116956409030450.jpg

Me too, Edgar. Me too.

Read the rest of this entry

Finding Julienne

This is a continuation of the post Meeting Julienne. It will make more sense if you read that first, but I’m not your supervisor. Unless I am and you’re reading this, in which case I really hope you aren’t reading this during work. I’m going to write this as if you read the other one, so any confusion is all your own fault.

Some cliffhanger, huh?

I hope it was as unsatisfying and frustrating an end as it felt to both me and Julienne at the time. Now imagine me waiting a year to post the second part of the story.

Read the rest of this entry

“Moving On”

A phrase I hear a lot now is a variation of “there are no words I can say to you right now.” I completely understand that sentiment. There really aren’t words that we can use to convey the depth of sorrow, empathy, sympathy, loss, love, and common human togetherness that we feel when someone, whether it’s one we know and love or a complete stranger, is suffering from the loss of a loved one. In a way, those words convey all of these feelings, like the phrase is a magic spell to bind emotion into language, itself incapable of conveying it, in a short, succinct, and meaningful way. I appreciate it when people say that to me, because there are simultaneously no words and not enough words that can truly soothe a suffering heart.

Of course, it’s a real shame that there are no words. Every human being who has lived in the history of this planet is either dead or will be. We should probably have come up with words by this point. But I understand the difficulty, especially now in an age when “thoughts and prayers” is a phrase that conveys a complete indifference to the actual suffering of people. (Fun side note: I received a card from coworkers after Julienne was in the hospital for two weeks with her second collapsed lung. All but two people used the phrase “thoughts and prayers.” The other two? “Prayers and thoughts.” What a world.) Both no words, and not enough.

Read the rest of this entry