I Don't Think I've "Got This"

A cautionary tale.

Original collage art by Stella Lyn Norris. Title: “You Got This.”

TRIGGER WARNING: This story deals with the topic of opioid addiction.

Tomorrow marks the four-week mark for me since massive breast and abdominal surgery — a double mastectomy with immediate DIEP Flap breast reconstruction. For those of you who haven’t been following along and may be unfamiliar, this means that I was my own donor, that my belly tissue was repurposed, transplanted to my chest, and made into new “breasts,” upon the medically necessary removal of the original articles.

As I’ve mentioned here before, pain management during my four day hospital stay was ineffective; the normal cocktail of narcotic medications wasn’t available to me because of issues with low blood pressure. 

As soon as it stabilized, and the staff finally found something I could tolerate, I was sent packing, armed with prescribed oxycodone (Percocet), and expected to manage things at home, on my own.

In the early days, I took a pill every four hours, as directed, then stretched it out to six. But after the first week or so of trying the every-six-hour schedule, I found that the last two hours of every cycle were absolute hell, spent sobbing and shaking, wondering how it could be that with each passing day, I felt worse than the one before. 

I couldn’t believe the way my whole skin-suit hurt. Like feet that have gotten dangerously cold outside, then warmed back up too quickly, from head to toe I was stricken with a prickly feeling. (I say this with all the backing of my hard-earned Alaskan citizenship, and I know some of you reading will know just what I mean.)

Firmly in the grips of one of these spells, one minute I would be shivering with a bone-deep chill which nothing could warm, then just as suddenly, as though a switch was flipped, I’d find myself breaking out in a hot sweat. I often felt light-headed and slightly nauseated. I didn’t have much appetite. I fainted briefly once, and threw up. I was in too much constant pain to sink into any kind of healing sleep, and exhaustion mounted. I broke down in tears at least once a day, always during the last two hours of waiting for that next pill. I lived by the clock, for the hour to come around when, finally, I could take another dose of Percocet.

A lot of the surface area of my body has recently suffered the business end of a knife. I’m covered in ten hours worth of sutures, both internally, and on the surface of my skin. I now understand, first hand, what many people who undergo mastectomies call ‘Iron Bra Syndrome.’ 

On top of the feeling that I’m constrained by an ill-fitted, metal corset that can’t be adjusted, there’s the fact that, along with my breasts, part of a rib was removed, blobs of flesh from my belly were cut and pasted to my chest, and my abdominal muscles were retracted, then stitched back together. A long, horizontal incision stretches across the whole front of me. It feels like my belly was lifted up like the hood of a car, and all my inside-parts were wrenched on. Because it was, and they were. 

So, it’s no wonder everything hurts so much.

I’m reminded of that somewhat terrifying game called “Operation,” that we all played when we were kids (what were our parents thinking?). Remember how it worked? If you came close to the metal edge with the tweezers used to extract the various parts from “the patient’s” amorphous belly — a wishbone, his Adam’s “apple,” or a broken heart — a mild electrical shock was delivered, and the poor guy’s big, red nose lit up. Well, I am that worried-looking guy right now. When I come into contact with anything — the bathroom sink as I lean over it to brush my teeth, a poorly placed pillow, or even my own clothes — a punitive buzz rips through the organism of my body.

I called the nurse in tears.

“My pain is out of control. I can’t sleep, and if I can’t sleep, how can I heal? Waiting six hours between doses of Percocet seems too long. The last two hours, consistently, are unbearable. And I’m saying this as someone who has experienced unmedicated childbirth.”

“Okay, you can go ahead and take it every four hours,” the nurse said, in a no-big-deal tone of voice.

The next day, realizing this meant I’d need a refill soon, I called back. This time, the tone of the conversation was different.

“Weelllllll, the doctor might write you one more prescription, but you’re gonna have to figure out how to get off of this medication. If you don’t start weaning off it now, you’re gonna be shit out of luck.”

“But. Wait. What? Just yesterday you said I should increase the frequency?

There wasn’t much explanation, and I got the distinct feeling that she was mentally filing me under “Possibly trying to abuse the system.” The most she could offer was a different drug, to try and bridge the gap.

Another week went by, and I tried everything they threw at me: Tramadol, Valium, large doses of ibuprofen…but, nothing doing. I couldn’t find any relief.

On another phone call with a different nurse a few days later, it was suggested that I begin to space the Percocet out even further. Now I was told to take one every eight hours.

“You can have a Valium in-between, at the four hour mark, if you need something to tide you over.”

 She also suggested that I start cutting the Percocet in half, taking a whole pill only once per day, and working my way down, eventually, to three-half pills, then two, and so on. But the less I took of the medicine, the worse my pain experience got, and this scared me. I really didn’t see how I was supposed to be able to cope. I was already shaking and crying in agony at the four-hour mark, unsure of how to make it two more hours, and now there would be even longer stretches between doses. This Valium had better do something to soften the blow.

It didn’t. 

Even with the Valium, I lay in the darkened bedroom, unable to sleep. Things were getting desperate. My temperature dysregulation went completely off the rails. It’s very difficult for me to get up and down out of bed, but I log-rolled off the edge multiple times a night, free-falling to my feet, hobbling back and forth to get another blanket, then another, rearranging pillows into the recommended “beach chair” position I’ve been sentenced to. 

I’d get all six of my pillows and the many blankets positioned around me, just-so, and set the heating pad to 150 degrees, but nothing could make me stop shivering. Then, just as suddenly, I would begin to feel sick from the heat, tear everything off, and lie there panting in a sweaty disarray of pillows, blankets, and displaced dogs, drenched, and trying not to vomit. I’ve had a lot of training for this for the last couple of years as I’ve journeyed through perimenopause, so I’m already at a fairly advanced level of handling hot and cold flashes. But this was off the charts. Next-level.

During long-distance calls while my husband was away on multiple-day work trips, I began to break down. I told him this was so much worse than I’d anticipated, and confided that I’d begun to feel quite dependent on the Percocet. It seemed I was just living for the promise of getting from one pill to the next. Doing anything consistently every day for about a month could anchor it into my life as a new habit. I knew this, and I spoke to that fear.

We tried to strategize together about how I might get away from it, knowing that the promised, “one last prescription” was going to come and go, and here I’d still be. But neither of us really knew what to do. I could tell he was very troubled by having no idea how to help, and felt terrible about being away.

But even when he returned, I think he felt just as helpless in person.

“I really am afraid I’m getting addicted to these fucking pills.” It was strange letting the words escape my lips for the first time, hearing them spoken aloud. I noticed the way unleashing them made my chest quake with tears as I dissolved in his arms. The way the truth of these words hung in the air with such a high specific gravity frightened me. 

Was that me crying out? Was it really me, saying this?

Two of my very generous friends in Alaska surprised me with a gift certificate for five sessions at a local hyperbaric center, for treatments known to help promote wound healing. 

When I arrived for my first “dive,” as the nurse called it, I eyed the chamber — a very strange contraption —  thinking it a bizarre invention (and it is). But I climbed trustingly into the little tube, got zipped in, and placed the nasal cannula, which would deliver oxygen. 

I lay there watching the floppy, vinyl spaceship around me become rigid as it pressurized, like an airplane. My ears popped, like the nurse warned they would in the beginning, and again, when it depressurized at the end of the session. She checked in periodically through the walkie-talkie to make sure I was doing alright in there. I nearly nodded off once I became accustomed to it. As odd as it was, I could feel a powerful, parasympathetic state coming over my nervous system, overriding the awful buzz that had been churning, keeping stress hormones working overtime. 

Afterward, when I “landed” back in my body and climbed out, sensation came rushing back, and I realized I had just experienced my first hour without searing pain in almost three weeks.

Another kind and trusted friend went out of his way to drive me around to this, and other appointments, while my husband was out of town.

“How’s it going today? You look a little pale.” He’s felt like a bestie from Minute One of our first meeting, ten years ago. I can be real with him, and I think he feels the same way around me.

“I’m just trying not to become an opioid addict,” I replied, as I climbed gingerly into the car, semi-confiding, not really kidding, but speaking in an ironical tone of voice. 

Once I arranged the seat belt around my hamburgered chest, I turned to look at him more seriously and said earnestly, “I mean, I see how it happens. I’m supposed to be weaning off of them, and it’s really hard!”

“Oh, ferfuckssake, just take the pills, Stella. Look what you’ve just been through! You need relief. Let yourself sink into an opiate haze, just for now.”

“I don’t know. It’s a slippery slope. I don’t want to become dependent.”

“Well, you won’t. You’re too smart for that.”

But wait a minute, I thought, or maybe said aloud (I can’t remember, because of the opiate haze), I don’t think it works that way. Does this mean only “dumb people” get addicted? No, this is physical, and this shit is powerful.

Over the next few days, I began answering with similar honesty to the many other inquiries about how I was doing in all the texts and calls from caring friends from all over the country, who continue to keep tabs on me.

“I’m having a hard time with pain. It’s not well-managed. I see how people become opioid addicts.”

All of these loving humans in my life expressed a lot of sympathy, and sent well-wishes for speedy healing, showing more faith in me than I deserved. Lots of love poured through the phone lines, across text chains, and through the mail box, as it has since this whole thing began. I truly am cared about, and this is what has carried me through. 

I was given the benefit of the doubt. Assumptions that I was too strong to fall victim to true addiction flowed like a mountain stream. That couldn’t possibly be my lot in life. “You’re so strong! You can do it! I know you will power through this, just like you have with so many other hard things. I love you! You’re so resilient. You got this!”

And while I would be nowhere without these friends, I began to realize that what I was actually saying was, “No, I don’t think I’ve got this.”

I thought about it for days as I shivered and cried and looked at the clock, waiting for each dose. Then, finally, on Wednesday the time came for a long-awaited Zoom visit with my Ohio-based herbalist. We’ll call her E. She’s one of the most supportive people in my life, and whip-smart. 

E studied and earned prestigious herbal medicine degrees in Scotland and the UK, where they still hand those out. In Europe, the longstanding tradition of healing with plant medicine stands firmly anchored in place, as it has across centuries (more like millennia — all of human history, actually). Though challenged deeply during the savage violence of “the burning times,” the lineage of plant medicine wisdom is more unbroken there. Clinical herbalists are licensed, and regarded as valid, professional practitioners. 

While studying, then working in the UK for years, in addition to the focused study of botanical medicine, E became thoroughly educated about human physiology, regularly ordered and interpreted lab work as part of her job, became familiar with reading reports on various kinds of scans, and learned all about herb-drug interactions. Her knowledge of plants is deep, and her clinical skills, impressively well-rounded. In the US, there is no path to becoming a “licensed herbalist.” There is no regulatory board, and the scope of practice is more limited. So it is a real gift that she brings all of her overseas experience to the table during our visits.

Seeing E’s face pop up on my computer screen felt like the sun, coming out from behind a thick cloud bank. It had been a little more than three weeks since my surgery. I described what I’d been going through, showed her my mutilated body, talked about how poorly managed my pain felt, and shared my growing fears about the Percocet. She listened carefully, as she does, nodded with compassion, and asked if I’d been noticing narcotic withdrawal symptoms.

Upon reviewing those with her, I realized something groundbreaking that shifted my whole perspective. 

My understanding went from: These pills are barely keeping my surgical pain at bay, and when they start to cycle out of my body, I’m in sheer hell, to realizing that what’s been happening is, each time these goddamn pills start to wear off, I’m suffering from physical withdrawal that may be worse than the post-operative pain, itself. 

In my compromised state, I just hadn’t put it together. This is why practitioners in the healing arts don’t treat themselves. It’s why doctors go to doctors, and herbalists go to herbalists, as I was doing now. The sweating, the shivering, the skin sensitivity, the flu-like symptoms, and such bad insomnia, even Valium wouldn’t touch it — these were all problems caused by taking (and not taking) the oxycodone. All of a sudden it came into focus. Oooooooh! So this was not all just a result of being in the Frankenstein-phase of post-surgical limbo. This was opioid dependency.

“I do want to speak to the pain,” E said. “I’ve worked with a lot of women who have had mastectomies, and let me just tell you: no one finds the pain manageable. There is never enough relief.” 

Hearing this helped so much to normalize my experience. It validated something that had gone unsaid until now: that this really was too hard, and I’d just have to do it anyway. That it basically just sucked, but not because I was doing it wrong. It wasn’t that “they” hadn’t yet dialed me into the right cocktail to make it all go away. This just is what it is: a many-phased, brutally painful surgery that has a long timeline for healing. There’s no button to push or lever to pull (or pill to take) that lets you jump ahead to an easier point. Everyone who has this procedure just muddles through the best they can. And yes, many run the risk of becoming hooked on narcotics.

I suppose that some people, upon realizing there was no escaping all of this, might have felt demoralized and spiraled out even further. But not me. It gave me perspective, and a new resolve. For that, I am so fortunate. Armed with the facts, I felt equipped to face what needed to be faced. Perhaps this part comes down to a character trait, or can be attributed to having a strong will or enough “smarts.” Maybe my well-worn boot straps and history of “powering through” hard times helped to inform my next actions. It’s possible I would’ve arrived at the same realizations and conclusions myself eventually. 

But more likely, lifting myself out of this mess was possible because a caring practitioner took time to really listen and witness me. Perhaps she knew that informing me with shared truths from other women who have walked the same path before me would make me feel less alone. She trusted that providing basic information about opioid dependency and withdrawal would empower me to find the yellow brick road on my own.

The moral of the story is: when it’s YOU becoming addicted to narcotics, it can be impossible to see things for what they are. Also, one cannot assume she will not fall into this trap. The opioid crisis is being called an epidemic for a reason. Avoiding this trap doesn’t have much to do with being strong, or wise enough to out-smart it. One cannot always stay on top of the powerful brain chemistry at work behind these drugs. In fact, I think it’s quite miraculous that anyone does.

I do think there should be more patient education. Some on-the-nose handouts with bullet points outlining warning signs of dependency, and a clear list of withdrawal symptoms would have been good to have. This could easily have been given out by the prescribing physician at our pre-operative appointment, rather than relying on me to decipher the multiple pages of blurry fine print no one can read, which the pharmacist staples to the bag with the pill bottle.

Had he taken that simple step, it would’ve felt like my doctor, in whom I was placing all my trust, was being a lot more responsible with the power to giveth and taketh away. 

And had the nurses reviewed my symptoms and complaints in more detail during any of my desperate phone calls and office visits, or asked what in particular I was experiencing, the way E had done, perhaps these respected, licensed, medical practitioners could have helped me identify what was happening. 

Instead, the generic, cold command that I “figure out how to get off the drug” came across the line as heartless. Their threats to withhold further prescriptions felt mean, like an uncaring punishment, when I didn’t properly understand what was happening. 

I can recall a few different pivotal moments, which translated into shifts in the tone of my care. 

It went from making sure I could be discharged from the hospital with adequate pain control to use at home, mainly to make my bed available for the next patient on the conveyer belt, to being treated as someone who was just trying to abuse the Pharmaceutical Industrial Complex. 

In reaching out for help, I could see through the veil. I knew I was being screened each time we talked, examined for signs that might reveal I was a certain type of degenerate, who would eventually need to be ruthlessly cut off. I could feel everyone bracing for a showdown, preparing to treat this (me) problem with callous disregard, should it come to that.

As soon as my herbalist helped me understand what was happening, I logged off of our call, and stopped taking the Percocet immediately. 

Seeing with fresh eyes that with each pill I took, I would only be prolonging these hellacious effects, I went from longing for my next dose, afraid of the surgical pain getting too huge, to a disgusted, angry feeling. Recognizing the huge chasm I had unwittingly fallen into, I hated the pills with a new virulence. I wanted nothing more to do with them. Surgical pain, be damned! I would wash my hands of that drug, here and now. “Watch me,” I said to my husband, when I shared my newfound epiphany.

Armed with a new, experiential understanding that this ‘medicine’ was only prolonging my agony, it felt a lot easier to let it go. Yes, it would be hard to embrace even more pain, in order to get to the other side, but I knew that true healing wasn’t going to begin until the Percocet was out of my system. I would need to approach this with curiosity. What was actual wound-pain, I wondered, and which unpleasant symptoms were being caused by these hateful goddamnmotherfucking narcotics?

Sure enough, the next couple of days were especially difficult. I shook and shivered and felt nauseated. I went to therapy, and had a big talk about where I’m at with this whole earthshaking medical experience. We processed some of the body-dysmorphic feelings I’ve been struggling with, being in such a chopped-to-pieces state. And my therapist helped me see how much I need to turn my attention more inward, toward healing.

She reflected to me that I hadn’t been truly giving myself over to rest and the creature comforts so needed at a time like this. I was hereby granted permission to let the world go. 

“Just start with 24 hours,” she said, when I explained that I didn’t know how to do that. Hyper-vigilance is my nemesis. Between single-parenting, providing primary maternal health care as a midwife, and two and a half decades of various types of self-employment, including being an herbalist to others, I’ve been deeply trained to respond to people in a timely manner. 

And being a loving friend in a hard world where almost everyone I know is struggling through something difficult, I don’t want to let my people down. I want my friends to know I’m here for them, as they have been for me. I feel huge guilt when I don’t answer their caring messages right away. 

“Just send a heart,” the therapist says, making the shape of one with her hands. “You don’t have to reply to anything right now. But if you feel you must, just practice sending one red heart back in a text.” Her warm eyes and gentle smile make this sound easy.

“Well, besides that, there’s housework piling up, and I can only ask my husband for so much without driving him insane. There are to-do list items, chores, and even the goddamn IRS to consider.”

“Let me ask you something,” the therapist said, putting her notebook down, and leaning forward in her seat. “When your kids were young and they got sick, what did you do? I mean, did you make them do extra homework?” 

I smiled sheepishly when I could see where she was going, though it was painful to think about. Her face cracked open as she registered my understanding. “No! Of course you didn’t. You let them watch extra TV, or have ice cream if it was the only thing they would eat, right? You nurtured them, and let them take it easy. Didn’t you?”

At this point, I put my head in my hands and sobbed. She was right. That’s what I had done.

“The reason it’s so hard to know how to do this for yourself, is no one treated you that way when you were little.”

We talked through that a bit, and decided what healthy self-indulgence would look like right now. I left with a sticky note, on which she’d written a prescription for me — a homework assignment, of sorts. It said:

Yoga nidra (You Tube)
Progressive muscle relaxation
TV (with names of some shows)
Joyful snacks

I had been hurting all day, and was exhausted from working through the hardest parts of withdrawal. After my appointment, I took some ibuprofen and lay down. It didn’t do much, but I finally got a nap. It may hurt like hell, but come what may, I was determined not to take any more of the evil Percocet. At the time of this publishing, I have been completely free of it for more than three days. I know I’m not going back.

Now listen carefully, because this is so important: If you relate to anything I’m writing about here with regards to dependency on opioids or other substances, please know that each of our stories are completely unique, and vary widely. You may have a stronger, more dangerous physical addiction than me, or a longer standing pattern than what I just dealt with. No matter the story, we all have different physiologies, and this fact deserves respect. 

I don’t think I had advanced to full-blown addiction, but I do think I had developed a dependency, and was well on my way. I was shocked by how bad the withdrawal was, even just in putting more space between doses. Going “cold turkey” meant embracing the reality that I would have to walk through some fire to get to the other side. It was difficult, but I knew, from a clinical standpoint, this was safe for me to do. THAT MAY NOT BE THE CASE FOR YOU! 

Last year, I lost a friend to complications caused by sudden opioid withdrawal. This happened under very sad circumstances, but it’s worth repeating that it can be a real possibility when one crashes off “the dope” too quickly. So, if you are struggling with narcotics, PLEASE SEEK GUIDANCE AND DO THIS SAFELY, WITH ADEQUATE SUPPORT. We are all built differently. 

Whether we are using medications “correctly or incorrectly,” on or off-label, with or without support, these are extremely potent substances, capable of deeply altering our physiology and psychology. 

I’m telling you about this journey as though it’s all past tense. In reality, this is an evolving situation. The pendulum hadn’t even begun to swing the other way until as recently as just a few days ago. But I can report that, though it hurts all over to do it and makes me feel like I’m going to bust a stitch, there is already more laughter in our house again. I feel more like my old self, or, my new-old self. Even if this is a new version of “me” has had some of her flesh rearranged, the parts that count are intact.

I’m choosing to chalk up this “opiate haze” I just dabbled in to yet another learning experience, knowing that there is now a whole new sector of the population that I share something in common with. I will be able to relate to even more people with greater compassion and true understanding than I could before, having traveled a piece of the same road. 

One thing I can say about my rough and tumble life is that it has led to quite the rogues’ gallery of various types of folks I share things in common with. The more I’ve gone through, and the more I do the work of being honest and present with myself, the more deeply I am able to be honest and present for the pain of others in need of a safe and nonjudgemental person to sit with. That is a gift.

“Damn. You can be pretty dark sometimes, Honey,” my husband says, when he sees the collage I made to accompany this piece of writing.

“I’m just telling the truth!” I feel indignant. My spiciness is back, I guess. To justify myself further, I add, “Where do you think all good art comes from? You think George Jones was undisturbed? Or that Frida Kahlo was unpained? She wouldn’t have been half the artist she was if she’d held back from expressing her hardship.”

“I didn’t say it wasn’t good. Just that it’s dark.”

“Yeah, well.”

“When I do a song that is as old as the hills, and has the oldest flavor…a sad, sad and sad, mournful song…when I get done with it, it’ll be pitiful.”

-Ola Belle Reed

I’ll let Ola sing it for you herself, at the end of this post. But I have endured. And if you’re reading this, so have you. Look around: everyone you see is going through more than anyone else realizes.

I believe we are all just trying to get through the day, and that those of us depending on substances in order to do so, first got there by relating to those crutches as solutions. In order to succeed in leaving them behind, we might need to be shown new solutions, and perhaps bring some different tools on board to replace some of the more harmful ones we are currently relying on. 

For me that means crying if needed. Allowing the messiness of the process. I get to attend multiple types of therapeutic appointments, from herbalists to psychologists to physical and occupational therapists, and even get zipped into pressurized, oxygen-rich environments. Success right now is best defined as doing less, putting zero pressure on myself. I spend my days making smoothies from fresh garden greens, including common weeds (nutritive, supportive herbs), going for gentle dog walks, working through my physical therapy exercises, and yes, I have even started watching some TV. 

I fully recognize the astounding privilege I am blessed with in being able to do all of these things. I am well aware of the rare position I find myself in, and how lucky I am to be able to have such a safe container around me while I go through all of this. I have so many loving friends who are truly showing up for me — several of whom have literally traveled thousands of miles to help care for me, taking shifts. I have my dear husband, who is being my “everything,” and bringing home the bacon. I have been given the potent gift of however long it takes. 

I wish everyone could be so lucky. Typing these words squeezes tears from my eyes, because my heart aches for the 99.99999% of people in the world who don’t have these comforts or supports available to them.

Going off opioids “cold turkey” is not safe, physiologically, for everyone. Baby steps, clinical support, and all kinds of treatment options could be deemed more suitable, depending on the situation. Again, I realize these tools are not widely available to everyone. But hear me when I say it again: I would never want someone to read my story and think, erroneously, that they could leap off a similar cliff, only to meet a calamitous end. So PLEASE, be wise. Take this as a cautionary tale, and know that I can provide safe space and warm ears, if you need someone to talk to about this. I live in a big tent. There’s room for everyone in here.

---

Here is a resource for help with opioid addiction or other substance abuse support: Call 988, or visit https://www.samhsa.gov/find-help/national-helpline 

Original collage art made from recycled magazines by the author.