In keeping with the trend of speaking truth about what it’s been like to have my breasts removed and rebuilt with tissue from my belly, let me just say: it’s sucked lately, folks.
This phase of my healing process has been harder than I anticipated. I could liken it to the first hour of a long, hard, dysfuntional family road trip. We’ve barely pulled onto the highway, and already, the kids have pissed their pants, the engine has blown a gasket, there’s not enough air in the car, the tension is enough to cut through, and there are still hours and hours to go. The only way to get there is to keep on limping forward with the hope that, ultimately, we’ll arrive somewhere a bit better. A softer place than this.
Yes, I’m glad my breast disease is gone. And I know I would still have a lot of pain to contend with, even if I hadn’t opted for immediate DIEP flap reconstruction. Even “just” a double mastectomy has more than its fair share of complications — nerve pain, swelling, scar tissue, lymphedema, and adhesions. Implants are no walk in the park, either.
I’m still sure I made the best decision I could out of the few, shitty options available, but truly, the lower half of this science experiment has proven to be a certain hell, all its own.
When my surgical team said my abdominal muscles would be left intact, I didn’t understand that, though they wouldn’t be cut through, they would still be retracted (ow!), then stitched back together. I didn’t realize I wouldn’t be able to use them for months. When the doctor gave the prediction that my belly would be tight, I couldn’t possibly have been able to comprehend the true implications of his warning. I didn’t know my whole torso would feel like a foot that’s fallen dead asleep and is painfully waking back up, somehow numb and painful at the same time, for weeks and weeks (Months? Years? Forever?).
My new belly button is turning a month old next week. It’s had constant problems, and I’m hoping there’s not an infection developing. At least I have a belly button now, after spending a couple of strange weeks looking as motherless as I feel. But it’s as though my body remembers every mom-issue I’ve ever had, from prenatal times to now, and refuses to go quietly into a healed state.
Burdened for at least a decade with breast disease, my body has been in constant fight-mode. This has wreaked havoc on my immune system and likely has been the cause of a cascade of other health issues. And while I’m glad I’m being given a new chance to heal, the cost to get there is steep. Short term pain for long term gain, but not short enough. As my friend Grant Dermody says, “I wish patience would hurry the fuck up.”
It’s as though my new chest is made out of clay that’s barely dried yet. The physical therapist warned me to be gentle with the transplanted tissue. She told a story about another patient that had the same procedure as me. About three weeks after surgery, she was using a wooden spoon to inch a bag of coffee beans on a kitchen shelf closer to the edge, so she could reach it (T-Rex arms are real). It fell and landed on her new breast, leaving a permanent indentation that had to be surgically repaired. So, to say I’m feeling fragile is a gross understatement. It’s quite literal.
But my heightened sensitivity is not just skin deep. I have been completely unprepared for what the inner experience of all this would be. Ten hours under general anesthesia has left me stranded in a fog with a brain like Swiss cheese, on a rollercoaster ride of emotion. I’ve been melting down in crying jags, basically losing all grip multiple times a day. The front of my body feels like a bad sunburn being held under hot water, with a temper to match. Since one cannot flee from a situation like this, I seem to have chosen ‘fight.’ Everything has turned into a battle. And unfortunately, if there’s one thing I excel at, it’s fighting. Ask my extremely patient husband.
I am glad not to be taking narcotics anymore. My little foray into opioid dependence (thank goodness that’s over!) was a complete disaster. After I tossed those dreadful pills away, I went several days with nothing for relief, in order to assess what was what without masking any symptoms. Then I began taking a nerve pain medication at night. It’s not addictive, and seems to be helping me get some sleep. But it wears off by morning. During the day, I’m getting by with sedative herbs. I think this is best for now, in order to promote rest, and stay honest about my physical limitations. Otherwise, I am wont to overdo it, as anyone who knows me will attest.
I’m staying the course with physical therapy, and have a whole routine I’m trying to stick to around my healing. Washing and dressing wounds, using herbal compresses, drinking herbal teas and tinctures, taking amino acids, vitamins, and collagen powder, eating my 100 grams of protein daily (attempting to, anyway), doing my PT exercises, trying to rest, going for walks, staying diligent with scar massage, attending seemingly endless doctor appointments, going to the infrared sauna, and to the hyperbaric chamber for oxygen therapy, and practicing meditation. Yep, my days are pretty full. In fairness, the meditation part is a farce. In truth, it’s more like practicing-practicing meditation. My brain is a runaway train. I can’t focus on anything, even not-focusing. I can’t even seem to read a book.
At best, what I am doing is imitating the behaviors of a functional human being. I’m hoping that if I see myself modeling this behavior for long enough, eventually, I’ll be inspired to mimic it, and might somehow trick myself into emulating some degree of normalcy.
The highly sensitive state of my body seems to bleed over into other aspects of my person. Emotionally, I’m as tender as a big open wound. And I’ve still got those, too. At the tightest point on my belly incision, right in the middle of the big, fake smile-scar running from hip to hip, there’s been some skin breakdown. This has led to a vertical tear in my skin, like a run in a pair of pantyhose. It’s having a lot of trouble healing, and has already been debrided once. The big, gnarly black scab necrotized, and had to be cut down again to find fresh, bleeding tissue.
This seemed representational of the whole thing. I suppose sometimes creating a new, more living wound is the only way to move forward. But now there’s a deep gouge that’s had to start all over again, and it’s taking forever to resolve. I’m told it could wind up needing to be repaired with another surgery down the road, but I hope not. If that is what happens, hopefully it won’t require a skin graft, just a “revision.” Either way, that would mean more of the same: get cut in order to heal. It’s easy to feel like my body is just something the doctor is using to test the sharpness of his scalpel.
This surgery comes with a four to six month recovery period, at which point, I will be going in for another surgery (my third in nine months). Given that cold, hard fact, I’ve been hearing myself say that measuring my healing should be not by the day, but by the week, and that ultimately, I should consider it a year-long process. I hear myself saying this, but I haven’t really been listening. The detours distract me. The process is non-linear. It’s easy to lose sight of the bigger picture.
All of this serious business calls for a major need for some JOY, which has been in a short supply around here lately. There’s been plenty of wearing and tearing, but a severe shortage of pure, light-hearted fun, which has been turning us into grumps. Recently, I showed my husband an old, happy, healthy picture of us that I stumbled on from years ago. “Remember when we were us?” I asked. “I think so,” he said. It seems we’ve become unrecognizable to ourselves amid all the turmoil and unbridled stress. And when that starts to happen, you know it’s time for drastic measures.
So it is that next Thursday, just after crossing the six-week mark, and against a lot of odds, I’m hoping to travel to Juneau for the 49th annual Alaska Folk Festival. A few days ago I got cleared to fly, and am planning to attempt the journey.
Of course, while the doctor said I’m medically fit for airline travel, he has no idea to what. He doesn’t know anything about what “going to Folk Fest” usually means: Five days in a row of playing music all night until breakfast, sleeping just a few hours, then getting up and doing it all over again. Hauling instruments all over town. Dancing until your feet are nearly bleeding. Laughing and smiling to the point your jaw muscles ache. Losing your voice from singing until all hours. Even in the best of times, it’s customary to leave Folk Fest sick, crying with overwhelming love and happiness, and blue that the “real world” is calling you home.
I will have to modify all of this, of course. I am promising myself I will try very hard to take it easy, to go to bed at a reasonable hour, and take Uber around town, rather than schlep all over the place by foot. But even if I can’t fully let myself off the chain, I still want to at least try and do “Folk Fest Lite.” As our friend Bob-O recently said to me, “That’s better than no light at all.”
Bob-O married me and Jason at the festival six years ago. The year before, in the middle of our mainstage performance in front of 1,500 people, Jason got down on a knee and proposed to me. After I stopped crying and howling with glee, my answer into the microphone was HELL YES, which turned into the theme of our wedding.
A friend suggested we conduct the ceremony then and there, since so many of our friends were already gathered. While we were sorely tempted, we opted to wait a year so that we could return with family and even more friends, and do it right.
It was an epic wedding. No matter what else happens in this life, we will always have the memory of April 11, 2018 as the best day ever, made unforgettable by the organized chaos of our incredibly kind and talented chosen family.
Twelve bands volunteered to play over the course of the day and night, all comprised of good friends. We rented five school busses to deliver 200 people to the toe of a glacier, where after a completely unique and homespun ceremony, we all waltzed to the Alaskan anthem “So Fuckin’ Lucky,” upon kissing the bride. Then we took the party back to a big dance hall in town and proceeded to smash a piñata, eat donated moose meat and salmon, and dance the night away. (By the way, the piñata was made by a dear friend and amazing artist. It was fashioned as a fire-breathing love dragon, which she stuffed full joints and other party favors.)
Indeed, a Folk Fest wedding was the only way we could ever have gotten married in such style. It was the perfect plan, in that it was only very loosely “planned,” and more so, was a day that gave our friends license to be themselves. Which is to say: mind bogglingly beautiful, creative, loving and talented. And we rejoiced in the fact that with this ingenius design, we would always have our favorite festival to look forward to as an anniversary celebration.
Alas. These turned out to be famous last words.
The very next year we were too broke to make it, and the next two years after that, the festival was shut down by COVID. We finally got to go in 2022, which renewed our souls and was an important clan gathering, given what we’d all just been through. Then, last year, having been displaced to Louisiana by my husband’s job, we eagerly counted down to Folk Fest.
Feeling burned out by city life, unused to living in “America,” we were so happy to be on our way to Juneau, thrilled we would finally have a much needed reunion with our kin. The excitement was building at our stop-over in Seattle, when at our gate we started to run into friends and family. Noticing how many passengers were boarding with instruments (it’s not unheard of for jams to break out at 30,000 feet enroute to this festival) made it all start to feel real.
We were somewhere around Ketchikan when a Russian volcano erupted. Our plane was turned around mid-flight, and try as we might for the next 72 hours, we couldn’t penetrate the dreadful ash cloud. We returned to Lafayette broken hearted.
And so this year, six weeks post-major surgery or not, I’m going to try like hell to make it. If it costs me a little something, physically, so be it. My soul needs it. I must travel to Mecca and drink from the Fountain of Fun.
In addition to the public mayhem, there is also an annual, private, costume party (a separate, but related event), which always has a theme. This year it’s “Something went wrong in the lab.” The graphic for the event features a picture of Young Frankenstein. Which is perfect. In lieu of a costume, all I really need to do is take off my shirt.
Just kidding (not really).
I will be as cautious as possible, careful to keep my still-drying, clay blobs of boobs away from the mob scenes of too-crazy dance floors. I will wear my compression garments and request wheelchair service in the bigger airports, so I don’t use all my juice just getting there. But dang, y’all. I really need to touch Alaska. We’re terribly homesick, soul sick, sick of being sick, and just now, could use a big old infusion of the kind of love that only this tribe can provide. We need to remember who we really are.
YES WE ARE.
Thank you, Merle Haggard, for your genius and this, the best turn of phrase, used as the title of this piece.
Original collage art by the author, made from recycled magazines.
YES YOU CAN!
I wish you the very best, soul enriching trip to Juneau. And I have chronic lymphedema with all the challenges of travel etc so I urge that you use all the good ways to manage the trip.