“Congratulations, you’ve made it through! You’re on the other side!” These are the loving messages that have been pouring in from people in every corner of our life. And it’s true — I have. I am. These words of support have meant the world. I truly could not have done this without knowing there were so many friends holding space for me.
But when I cried to my friend in Ketchikan today, and told her I feel like I’m so far from having “made it through,” she was all sympathy. With plenty of her own gritty life experience to inform legions of hard-earned wisdom, she said, “It’s like telling a soldier Congratulations, you got through it, once they’ve been issued a uniform.”
So it’s true, while I just lived through a very long, dicey surgery, and I’m so glad people have taken the time to let me know they’ve been thinking of me, I’m quickly learning that healing from this is not going to be a linear process.
Well wishes have been raining down on us and we are basking in the love, so grateful for the flowers, cards, messages, phone calls, gifts, and multiple homemade meals, lovingly prepared and brought to my bedside by a dear friend who has been (literally) Jane on the spot. She has not shied away from the grotesque sight of my bloody bandages and what lies beneath. My loving cousin in Colorado had groceries delivered to my hospital room and has been keeping close tabs. Friends in our new town have signed up for our meal train, committed to helping keep us in food, which will be one less thing for my husband, Jason, to deal with while we both recover from this ordeal. My friend in Austin even sent this hilarious device, along with a book called No Mud, No Lotus, which I am getting a lot out of.
Two of our friends, a couple who split their time between Mississippi and Alaska, came to Lafayette for a few days to keep Jason company during the long surgery. They didn’t want him to have to be alone while anxiously awaiting updates and news. They filled my room with flowers and decorations, and were all smiles when I was wheeled in after the ten hours I spent under general anesthesia. These two angels ran errands for us during the first couple of days, while I was marooned on the bed, Jason stuck to me like glue, and the world was reduced to the four stifling walls of room 105.
The three of them had brought my otherwise stiff and lifeless hospital room to life with song while they waited for me. Personally, I can think of nothing more medicinal than music at a time when language alone fails to express the depths of certain emotions that lie beyond words. After the reprimand, Jason was careful to croon more softly in the days that followed. The resonant notes of his guitar and raw emotion in his voice surrounding me as I tried to heal in an otherwise sterile environment was a balm to my soul. Familiar melodies gathered around my bedside like old friends, and this felt like a lifeline to The Real World.
There’s nothing like a timeless ballad to express the upwelling of emotion hearts just can’t contain. Music works to connect our humanness to that of folks across time — songs of hardship and love, and of surviving unthinkable heartbreak; when it comes to music, the sadder the song, the better, I say. What a beautiful way to transmute hurt.
Jason slept on a less-than-optimal pull out bed in my room for three nights, enduring round-the-clock, hourly interruptions from nurses, who blasted fluorescent lights as they performed their duties, vigilant in making sure the cut and pasted parts of my body continued to pulse with life after The Great Rearrangement.
When first we arrived at five in the morning on the day of the surgery, the plastic surgeon drew lines across my body with a sharpie, correlating the location of important vessels with recent CAT scans, mapping out the fourteen-by-seven inch almond shape that would be removed from my belly, soon to be rehomed to my chest. This was the raw material from which new breasts would be constructed, immediately following a double mastectomy. The vessels he marked would be unplugged from my pelvis, wired into my chest, and responsible for keeping the transplanted tissue alive.
Crying jags were coming and going throughout the early hours of the morning, just as they had been in the days leading up. That morning, they’d started at home, when Jason went to pack up his guitar and we paused to make one last song together, lifting our voices through tears in harmony to sing Model Church.
In the hospital, the tears kept flowing while the staff did all the usual pre-operative blood draws, administered shots of blood thinners, started an IV, took a pregnancy test, and asked me my birthday dozens of time.
“Ms. Norris, what’s your date of birth?”
“And in your own words, can you explain what procedure you are having done here today?”
“A double mastectomy with immediate DIEP Flap Breast Reconstruction.”
“Okay, wonderful!” (Really?)
I was crying partly because it’s been such an epic journey to get here — already for the last six months I’ve been through endless pain, invasive procedures, another surgery, and multiple infections. I have taken eight rounds of antibiotics, just since August. Now, during and following this surgery, that number has been raised to eleven. And of course, I’ve been navigating ten years of breast disease, before all of that.
I was also crying from a sense of regret- especially that I hadn’t been able to take my poor, sick boobies for one last swim in the ocean, infected as they’ve been. I am truly sad about that. I would have liked to feel the sea caressing them once more before being rendered numb for life. But in a larger sense, most tears were falling just from the gravity of standing so near the precipice of such an intense change, a physical alteration from which I would never return.
I remember when I first found Pema Chödrön, and Buddhism. In one of her writings, she explains that courage doesn’t mean an absence of fear. It means being scared shitless about something, and doing it anyway.
The doctor seemed to think all this emotion I was expressing meant I might be rethinking things, or that we hadn’t adequately discussed my options. (Not that I had many.)
“No,” I said. “I’m clear. I’m ready. I’m just letting myself feel what’s happening to me.”
I faintly recall being wheeled into a room after that, and seeing tables covered with a multitude of shiny objects under bright lights, but then I remember nothing more.
One second later I awoke to the sound of a voice saying, “Ms. Stella, your surgery is over, dear.” I had no memory of being put under. They must have given me some damn good drugs.
What happens to the soul during such a suspended state of animation? This total obliteration of memory is so mystifying to me. Where did I go during those long ten hours?
Once I’d crossed safely to the other shore, and awoke to the faces of my husband and dear friends, I’m told I was immediately cracking jokes. But I don’t remember. I do recall laughter, and the delight of ice chips on my tongue. My friend was putting away her fiddle, and said they’d just been shushed for playing music while they waited in my room. I remember saying something like, “Yes! That’s what I’m talking about! YOU are my people!” It took forever to open my eyes, even once I was conscious. My eyelids had turned to lead.
When I remembered how to look at things again, I saw a veritable garden of flowers standing on the window frame, and colorful, rubbery decorations which had been stuck to the glass: depictions of rainbows, shamrocks, and a black pot — which could be interpreted as a Cajun cook pot, or one filled with gold at the end of a rainbow, or perhaps something more witchy.
The word ‘LUCKY’ was spelled out under the rainbow. I knew this referred to an anthem we sing in Alaska at all the most special occasions: Un est putain des chanceaux, or So Fuckin’ Lucky. Sung in “Homer French,” honestly, the actual translation may be questionable, possibly something closer to “We are all chancy whores.” But it’s the spirit of the thing that counts. At one very special moment in 2018, when Jason first kissed his bride, two hundred of our close, personal friends all spontaneously waltzed to it at the Mendenhall Glacier in Juneau, so it’s an especially meaningful song to us. The word ‘LUCKY’ was a good one for me to anchor to in that stuffy room during the four days of my initial recovery. I looked at that lettering and remembered all the riches I had, whenever I was feeling bereft.
There were a few complications throughout my surgery and during my after-care, but nothing I haven’t walked away from.
The first problem happened during the procedure, when my newly-formed right breast had just been put together, and developed a clot. This interfered so much with blood flow through those critical vessels I mentioned, that the whole thing had to be taken back apart and re-reconstructed. At the second attempt, there was proper perfusion, and it seemed to be working better.
The next hiccup was during my first night in recovery when my blood pressure tanked into the 70s/30s. Unfortunately, this precluded the use of any narcotic medication. Not having pain relief got real in a hurry. Fortunately, for the first couple of days, I still had a numbing agent at work on my lower abdomen, helping to take the blow out of the fourteen inch incision that now runs from hip to hip across my belly — a memorial to the the place that first housed my children, my umbilicus, and therefore, the original connection to my own mother, and of course the big old tattoo of Hokusai’s Great Wave, embellished with a couple of koi fish that had lived there many years. This has all been reassembled.
The blood pressure issue just wasn’t budging, and as the numbing agent began to wear off, it started to dawn on me what I was up against.
I was on bedrest for the first 24 hours or so, so I could just lay there, eat tons of disgustingly sweet jello, and be pitiful. I had a urinary catheter, compression garments on my lower legs, a belly-binder, an IV, three drains, an incision “vacuum,” and two wires wrapped around the new vessels, lodged deep in my breast. These poked out out through my skin and had little ends like extensions cords, which were hooked up to a doppler every hour, day and night, to monitor blood flow to the transplants. Luckily, perfusion has continued to be consistent, and this diabolical plan seems to be working. However, the lack of access to narcotics meant that my pain got really out of control by the third night.
Mastectomy pain feels like wearing an iron bra — one that’s too tight across the ribs, and can’t be adjusted. This is not made better by the fact that the band of the real bra I have to wear 24–7, stuffed full of bandages, runs right across two of my three drain sites, causing endless friction. The third drain comes out of the skin covering my pubic bone, which makes it difficult to wear underwear. I’m really into these stretchy white, guaze-y granny-panties the hospital puts you in, and even asked for a spare couple of pairs to bring home with me.
The urinary catheter came out on the second day, which struck fear in my heart. I knew this meant I’d have to learn to get up from bed to use the bathroom, and to begin walking a bit in the hallways in order to prevent blood clots.
Getting from bed to a standing position without the use of one’s arms or abdominal muscles when one’s core has basically been bisected was a reality that nothing could have prepared me for. The constraint of missing so much square footage (ok, maybe inch-age) of my belly meant that even once I did manage to get my feet under me, through a series of rolling and groaning, inching my legs slowly in the general direction of the edge of the bed, then the floor, all while someone lifted up on my lower shoulder, meant that there was no way to stand up straight. There simply was not enough slack in my skin to allow me to stack my shoulders in their rightful place above my hips. I hobbled in a ninety-degree position to the toilet and back, dragging my many plugs and wires, completely winded and exhausted by the epic, ten foot journey.
For most of my stay, I had a great day nurse. We’ll call him Nate. He was from Erath, Louisiana, and as Cajun as they come. He was all business, and I delighted in listening to him talk. “You gonna have all kinna trouble if you don’t start tryna get more upright when you walkin’ around. Your scar gonna get some reeeeaaal bad adhesions, and keep you stuck all bent down like dat,” he’d say. He made me want to do better, was always friendly, had a gentle touch and a “can-do” attitude.
At night, it was a different story. I was assigned a woman who looked exactly like Barbie but had the same, diagnosable personality disorders of Cruella de Vil. We’ll just call her The Worst Woman in the World. In typical Southern form, she sweetie’d and darlin’d me all the night, but was pure snake. No- I take it back. I don’t even want to insult snakes by comparing her to them. Just the deadly venom of snakes — that’s what oozed from her upturned nose, fake smile, and perfectly coiffed blonde hair.
When I was still high as a kite on morphine, she was pretty low-key. She snuck in and out of the room without much fanfare. I fell all over myself to thank her, and complimented her good nursing. She listened to the doppler without blasting all the lights, and didn’t have much to say. Jason snored from his little cot in the corner, not too bothered by her many comings and goings.
But on the second and third nights, I don’t know what happened. She turned on me. With no warning, she’d come in and crank on the overheard lights, speaking loudly as she talked down to me, as though I had been born only to inconvenience her with my temperature that had begun to rise, and my still-low blood pressure that wouldn’t climb above 80. She left us alone for hours at a time, until, worried, I’d push the button to ask if someone could please come take my temperature. She’d come in, guns ablazing, and snap my head off.
“We’re very busy on the floor tonight. There are people in much worse shape than you.”
“Oh! I’m so sorry. I’m just concerned because I’m high risk for infection. Chronic mastitis was part of the reason I ended up here, and my temperature was 100.5 at last check.”
Thankfully, nothing came of this elevated temperature. It wasn’t fun, with all the teeth chattering and a feeling that nothing in the world could warm me, but it normalized over the next day or so. We chalked it up to probably being just an immune response, given the test that system was being put to by such an extensive surgery.
But we couldn’t get my blood pressure to come up no matter how many fluids she pushed through my IV. When the readings kept coming in low, she put her hands on her hips and sighed, looking at me in disgust, shaking her head with great disappointment.
In the wee hours of morning, unable to cope, I buzzed the nurses station and asked if we could discuss options for pain relief. When she came in, all in a huff, she scolded me.
“I already told you, morphine is out of the question. The doctor wants you off the IV now, and unless you get this pressure up, there’s not much I can do for you.”
Her tone got more biting with each passing hour, and I cheered inwardly when Nate came back on shift.
He saw fit to get me some Percocet, but then I vomited it up so violently, I messed up one of my drains. A huge clot broke loose and filled the entire bulb with new, bright red blood, which then had to be changed out, and everyone was concerned by this back-slide.
Nate explained that puking was a violent act to my cut-up, pasted back-together body, and that we would have to avoid it happening again at all costs. He gave me an anti-nausea medication and some kind of injectable anti-inflammatory in lieu of pain relief (which did nothing). Basically, I’d had both breasts cut away, my belly removed and replaced onto my chest, and all I could really tolerate was Tylenol.
“When we gave you the Percocet, that’s when you vomited,” Nate deduced. “So maybe you don’t tolerate it so much. We gotta try something else. And you gonna have t’get some food to stay on your stomach.”
The Worst Woman in the World came back that evening bearing a little cup with two Percocet in it. When I explained that Nate had discouraged this drug due to the vomiting it incited, she snatched it roughly back out of my hand and said, “Fine then!”
She left the room in a blonde and haughty huff, and I felt completely adrift. I was starting to lose my grip. When she returned later, I asked what else I could have to take the edge off, and she gave me a stern lecture.
“I’ve tried to help, but you’re just being difficult. You’ve been declining pain medicine all day. You’ve had nothing since nine this morning and now it’s midnight. If we can’t find something you’ll tolerate, we’re not going to be able to discharge you home.”
From her tone, I could tell getting rid of me had become her number one goal in life. I wondered what I had ever done to make her hate me so. Jason stepped toward us as she reemed me out.
“Ma’am, there’s no reason to speak this way to my wife. She deserves to be treated with respect, and is in a great deal of pain.”
“Well, that’s because she’s been refusing medication all day!”
“No,” I cried, trying to explain through my tears. “I’m not trying to be difficult. I was just following the directives of my day nurse. I desperately want something for pain, I just can’t afford to vomit again.”
Jason took another step toward me, in order to comfort me, and The Worst Woman in the World went completely ballistic.
“Back off,” she said sharply, turning on him like a mad cat, nearly hissing. Jason was stunned and looked at her with his jaw dropped, disbelieving. Suddenly, she acted as though he posed some kind of bodily threat to her. Whenever he tried to speak, she just kept repeating, with increasing volume, “You need to step back. Step back!”
Somehow, she had become the victim. Jason pointedly walked backwards and put his hands in the air, using the universal sign language for Don’t shoot!
There have been many times I’ve had to advocate for families in hospital settings. During transports when home births plans have gone awry, I’ve encountered plenty of mean nurses in my time, and witnessed a disgusting amount of medical abuse. Because of this, I know the secret trick of meandering out to the nurses station to speak politely with the charge nurse. Explaining, diplomatically, that a particular nurse-patient relationship didn’t seem to be a good match, I’ve seen just how easy it is to get someone different assigned to a case. Now the time had come for me to advocate for myself, and suddenly I found it one of the harder things I’d ever done. I’m not usually one to incite conflict. In fact, I’m a bit conflict-phobic. It felt especially difficult to use my shaky voice, being the one in pain and feeling vulnerable, but I asked in measured tones, through tears, if I could please speak to the charge nurse.
“Certainly,” she said, smiling and pleasant as could be, and breezed out. When she returned with the charge nurse, she was all sugar.
I explained to him as I ugly-cried that I was not receiving compassionate care, and that I would like to request a different nurse.
No problem at all, the very nice man said, I will take over your care, personally. And when The Worst Woman in the World left the room, wouldn’t you know it? My IV was reconnected, and all of a sudden, morphine was magically available to me.
From there things got back on track.
The next big moment was transitioning home, which was harder than expected. We’ve both had multiple emotional meltdowns. I’d prepared the best I could, even bought what Jason refers to as the dump truck — a power-operated lift recliner many DIEP Flap recipients I’d spoken to advised me to purchase. Meals keep flowing from our sweet friends, one of whom has been to see us every day in the hospital, and since we’ve been home. These things have been great comforts.
Being back in our own environment, complete with requisite dog therapy, has been a blessed relief, but in many ways, it’s also been ungraceful. We’ve had to get used to a complete role reversal in our relationship.
Jason has had to learn to do everything I do on the regular. “It’s exhausting, being you,” he said after Day One. On top of the usual household management, he’s helping with all the drain and wound care. He’s been so helpful, carefully washing his hands and gloving up to help strip and drain the tubes, measuring liquid from the drains, and making sure my incision vacuum is functioning properly. He even washed my hair in the hospital during my first shower following surgery. (That was a religious experience!) He carefully combed out the nearly dreadlocked mess that my head had become during the three days I went without a shower.
I’m finding ways to do that and lots of other things for myself, but I still need a ton of help. He’s had to bring me meals, do the laundry, clean the house, take care of the dogs, wait on me hand and foot, and help me dress my wounds. In the middle of the night, I try to let him sleep, and administer my own medication, setting alarms and carefully writing down what I’ve taken. It’s a bit of a nightmare, fumbling in the dark, dropping things, trying to figure out how to get them back off the floor, and to be careful I’m taking the right pills at the right times.
This morning I was so tired, I turned off one of my alarms and was two hours late with a pain pill. That was a huge mistake. It turned into a rough day. Jason woke to me sobbing in the living room, and I was unable to turn my mood around for the rest of the day. The pain is one thing, but my disfigured body is another. My new, not-so-pretty-titties, all bandaged and stitched, are just lumpy tissue cinched like a coin purse around “paddles” of blue ink-circles, recycled from the tattoo on my belly, which comprise the sites where new nipples will be constructed. This will happen later, in a strange process resembling something like origami.
Meanwhile, hard, knotted “breast” tissue, with big dips and depressions, tight bands, lumps, bumps, and angry discoloration has been a certain freak show to watch unfolding. Starting with getting behind on my pain control, moving onto the grief I feel about this disfigurement, I reached a breaking point today. The spreading black spots have been the most concerning, as we’re supposed to be on the lookout for necrotic tissue. So this afternoon, we returned to the hospital to get another set of eyes on it.
The plastic surgeon compared this process to human development, and said, right now, we are at the embryo stage. Things are going to change and evolve over the next six months, and I’m not to judge what I see now as the final outcome — not by a long shot.
In fact, a whole other surgery will happen later this fall, when everything is soft and settled enough to make some adjustments. Then he will build the nipples, and generally get things evened out. This is far from over. That my breasts look like they’ve been chewed up, spit out, and have survived a bar fight or two right now is supposedly “normal.” I was reassured, and found it helpful that he didn’t scream and run from the room, as I have wanted to, at the sight of my bare chest when I dropped my shirt.
I am already starting to stand up straighter, though it’s still terribly tight across my belly. I feel like my breast bone is connected to my pubic bone.
Next week I’ll get the incision vacuum removed. The week after that, I’ll get my new belly button. The location for this is presently staked out with a big piece of suture dangling from tight skin, flagging the spot where he’ll make the cut.
Sometime, hopefully over the next three weeks, the drains will come out, and eventually, these wires. I’ll keep walking, hopefully more and more upright, and over time, we will correct the horror show that is my chest. But the diseased tissue is gone. Hallelujah!
Meanwhile, I’ve been feeling leveled with grief and an extra-large helping of body dysmorphia. I’ve have had especially crippling anxiety about becoming terribly unattractive to my husband. But to his credit, from Minute One, when this whole, terrible calamity first reared its ugly head, right up to today, when I call myself hideous and tell him I can barely stand it, he’s said nothing but the right words, and a lot of them. He has truly shown up for me in a way that I think few in the world could have.
The fact is, we are growing more intimate than ever through this experience. It has shown me yet another glimpse at my own inner strength, has proven his steadfast dedication, and is an important reminder that we can do hard things.
Ultimately, what I am anchoring to is true love, and this important fact I know deep in my chest, far below the scars and puckered skin, the purple and yellow bruising, the misshapen lumps and bumps: We are all so much more than these bodies.
When I opened my eyes in the recovery room, and Jason was the first person I saw, I knew in a whole new way that when I close them for good someday, I hope he’ll be the last.
Here’s the song Jason and I sang on our way out the door to the hospital. Enjoy!
Hi! Ha ha! That’s hilarious about the gas.
I typed it, using T-Rex arms and my dump truck with a pillow on my lap. Thanks for your wonderful feedback. I’m glad you enjoyed it.
No ironing board because living room space is cramped but I do have three side tables perched around my throne.
I’m so sorry you can relate to so much of this. What a bummer of a club to be a member of. Then again, how else do we get so wise and salty?!
All of your gifts are coming in SO handy, and bringing me much comfort. Thank you!!!! Oxox
Much love to you and the favor-doer
On the 25th I wanted to send you a message of support but really didn't have the words and then somehow it felt too late and possibly intrusive. I was so relieved to see you had posted something but it took me on an unexpected journey from relief, incredulity, anger and to optimism. I will re-read it. Jason is obviously an wonderful advocate, and in this inexplicable care-situation, much needed. When vulnerable, the only thing better than having a powerful advocate, is having one that loves you.