Travels Through Uncharted Territory
While wandering through liminality, which, right now, seems interminable, I have taken on a new aesthetic. It falls somewhere on the spectrum between the fashion sensibilities of The Dude, and escaped mental patient. Here is the dress code: open bathrobes, four-day old shirts, and nothing constricting about the waist. Every few days, I brush my hair.
There’s a fuzzy line between solitude and depression, and I’ve been skating on it.
There’s just so much to process since getting the news that I need to have a double mastectomy. Besides walking the floors in circles and laying down at strange times of day, I’ve been spending my time going to a battery of medical appointments, averaging about four a week, and I simply have not had any energy for socializing. It is a bit ironic that shortly after moving to Lafayette, the land of drive-through daiquiri stands and nonstop party vibes, that I almost immediately quit drinking and have, lately, become something of a shut-in.
My surgery isn’t until February 26th, which is a frustration, as I am tired of being in pain, and the long wait leaves too much time for anticipation. The date got pushed back because the microsurgeon will be taking a vacation. Hopefully he will come back good and relaxed, because he is one of the three surgeons who will be involved in the rearrangement of my belly onto my chest. Specifically, he will be responsible for the reconnection of vessels necessary to keep the “donor tissue” perfused, alive, and hopefully well.
I’ll be in the hospital for four days, where all of this will be closely monitored during the most dicey phase of the transition. I’m my own donor, of course, so there will also be the big gaping hole in my belly that will need closing up.
If you haven’t yet read my recent story, FRANKENBOOB, you can check that out for more information on the crazy procedure I will be undergoing in an effort to remove disease from my body, whilst attempting to continue to have breasts.
One hopes to avoid some of the nightmares one has been hearing about that can come along with DIEP Flap breast reconstruction. These include some frightening (and bizarrely named) occurrences such as “Ken Doll Syndrome” and “dog ears.” I’ll leave those bodily disfigurements mainly to your imagination, but they have to do with what can happen with regards to the scar that will run from hip to hip across my abdomen. Of course, these mishaps are merely cosmetic, and inconsequential compared to the scarier possibilities of necrosing tissue, infections, blood clots, and the usual concerns that come with being under general anesthesia for 11+ hours. Such as: Will I still have a brain?
Apparently, among DIEP Flap patients, there exists quite the sisterhood. People I barely know have been coming out of the woodwork to share their stories and show me their scars. To these generous women, I am eternally grateful. And to a person, they have all told me that recovery is no joke. I am in awe of their strength, good humor, and resilience, and hope I can channel some of it for myself during the aftermath of my procedure. According to these veterans, here are just some of the things I can look forward to:
Not being able to lift my arms above my head for a couple of weeks, and then only slowly working to getting them all the way up with physical therapy and time.
Not being able to use my arms to push up from a chair or a bed, therefore, sleeping in a power recliner for weeks or even months. This frightens me, because of searing pain in my low back that I struggle with, even on my best days. One friend suggested I do “touch and go” exercises to prepare, as I will have to depend on my legs for the ability to get up and down. She meant that I should practice briefly sitting and standing back up, over and over again, without the use of my arms. But when I try that, a cattle prod zaps my low back where the discs have degenerated, and I don’t know how I’ll manage.
Being “like a clamshell,” unable to straighten up all the way for a while because of how tight my belly will be. Since a big section of it will have been removed and the edges around the missing area closed back up, I will have to be careful not to put too much strain on the incision while it’s healing, lest it come apart. Pictures of wound dehiscence I have seen online haunt me. When I think about this, the fear it strikes brings up language like: coming apart, severed, cut in two. I push these thoughts away, and use the anxiety to stiffen my resolve to make healing a top priority, and a full time job.
I will need to eat 100+ grams of protein a day. This pre-overwhelms me. I am not sure how I will accept help with meals, or even eat hospital food while keeping with the strict diet I’m supposed to be on. Right now, I am eating ONLY meat, fish, veggies, fruits, specific, healthy fats (olive oil, coconut oil and duck fat), and bone broth, in order to keep pain at bay with regards to other health issues. I’m pretty sure I’m going to have to let go around this, and just do my best.
“Barbed wire” sensations across the chest. Good grief, I hope not! But this was how one friend described the nerve pain after her mastectomy.
Fatigue and loss of strength that may take months to recover from.
But at least the diseased tissue will be gone, and this is worth a lot to me. That all of the above seems tolerable in comparison to the way things have been feeling should say a lot. Upon reflection, now that I know more about the condition my condition is in, I can understand why, when I look at pictures of myself from ten years ago, I find I’m barely recognizable. This breast disease has been zapping my vitality. It has truly aged me. I don’t know the science behind it, but I sense that having this illness slowly festering away inside of me can only have contributed to my system becoming so dysregulated as to develop autoimmunity.
The highest thought I am holding about my physicality in the face of all of this is: Removing the diseased tissue, a.k.a. my breasts, will ultimately allow my natural vitality to return, and will result in a vast improvement to my overall health.
Meanwhile, I shuffle around the house in worn out slippers and find myself laying down at odd times of day. What I am searching for is a comfortable way to settle into the place that exists somewhere between my ears and behind my eyes. This is not an easily mappable location; there are no exact GPS coordinates. It seems to take several days of silence at a time to even begin to make it out, and only then does it emerge from the mists slowly, like a far-off castle in the sky.
I know I’ve found it when I stumble upon a strange pressure that exists there. It feels a little like the sensation of drinking a carbonated beverage too fast. Effervescence rises to the roof of my skull, and I take refuge there, where everything pares down to the basics, to the essence of a Self. No matter that I was born nearly 49 years ago, this is the indestructible part of me which remains essentially unchanged; the factory condition of a person before the world imprinted upon her.
It’s where I need to live during this chapter of upheaval, in order to stay clear about what I am doing. Here at the complex intersection of middle life, perimenopause, chronic illness, long COVID, anticipating a massive surgery, anxiety over what seems- by all appearances- to be a collapsing world, and personally, being a displaced Alaskan living in South Louisiana, I have not just been feeling lost, I’ve been feeling obliterated.
The mysterious sanctum inside my cranium that I am curiously exploring, and the big, squishy sinking pot hole, red and beating in my chest, that I am committed to keeping open, are all I have the bandwidth for just now. The only place I am truly comfortable is in the woods, with the forest floor thrumming under my feet.
We watched American Symphony recently. If you haven’t yet seen it, please give yourself the gift of this movie. It’s the story of Jon Batiste and his wife, Suleika Jaouad. It follows them through the very emotionally mixed year they experienced in 2022, when he was nominated for eleven Grammy awards while she was undergoing her second bone marrow transplant for leukemia.
I was gutted by Jon and Suleika’s courage, honesty, and deep love for each other, and the undying commitment they both show toward their respective artistic expressions. These two exemplify love, and seem able to maintain a remarkable connection in the face of adversity. Their raw openness toward life, even when its brutality might make a person want to turn away, is truly inspiring.
It’s funny how inspiration can throw open a window in your brain and act as a mirror, simultaneously reflecting back things that are hard to look at in yourself, while lifting you to a place with a broader view. This movie made me think about how I am walking through my own personal challenges right now, and the ways in which I would like for more grace to accompany me on my journey. The example of this couple and how well they do humanness and supportive relationship through trying times made me want to do better.
I’m not saying I’m going to start wearing pants when I’m at home- I wouldn’t go that far. But I do want to try harder. By that I don’t mean I want to put on a braver face. I am not concerned with appearances, or showing up in the world as anything I am not. But to dig deeper into authenticity, to feel bravely into the shadows in order to learn more from that which is testing me- these are things I want to recommit to.
Jon says of Suleika (and I’m paraphrasing, here) that her ability to embrace darkness, to look directly into it without allowing it to consume her, is something he learns from. And she says of Jon that he has an immense capacity for change. I love that these are things they value in each other. I hope to embody these virtues.
So while I’m knocking around, searching for that place deep in the bones of my skull, I am asking for more clarity to shine through the cracks about how to alchemize pain and difficulty. I’m willing to consider that the clunkiness of being a flawed human, like a grain of sand irritating the soft tissue of a mollusk, offers the opportunity to grow pearls of wisdom. My highest hope, my deepest wish, always, always, is that these efforts add to the light of Love in the world.
You are very courageous to write so openly about what you're going through. May that courage stay with you all the way.
If anyone could hammer their way through a situation like this it would be you. Well, maybe a hammer- maybe a butterfly. In any case trust your gut and don't look back. Keep writing.