Week One: Post-Op Hell

I thought this would be the easy part. 

This is the part I thought I knew. Even though I’ve never done this before–never had surgery, or a broken bone, or had stitches other than those I got when my wisdom teeth came out–this part I get. It’s the body. It’s a trauma. I get it. It’s controllable. 

All you have to do is go in strong, rest, eat, take your meds. And I did go in prepared. I had been crushing the gym for months, am stronger than I’ve ever been (I have the InBody report to prove it), I’m killing it with my nutrition, had a post-surgical nutrition plan written up by my bestie, my mom in town to cook for me and feed me, meds already picked up from the pharmacy, knowledge of what movements I can and cannot do, my whole house set up with medical supplies and clothes I wouldn’t have to reach overhead for. Easy. I got this.

All that was left to do was to go in and execute. Execute the plan: Eat well. Take meds. Get ahead of the pain. Sleep. Rest. Move, very gently and often. 

But that’s not what happened, is happening.

I can’t sleep. I’m shaking. I’m panicking. I believe I am going to die. I am sobbing in my bed. I can hardly stand up. I can hardly speak, make sentences, keep my eyes open. 

I wear compression socks but my legs tingle and I think I’m having a stroke.

My hand is cold. 

It must be a blood clot. 

I am not allowed to move my shoulders, so I bend my wrists and elbows and order stress balls from Amazon to keep circulation moving. Is that a thing?

I see a new bruise under my right breast—the one without cancer, the one I lifted for my mental health, to have something I could look at and like while I go through months of hell. I must have an infection. I will lose this breast too.

In the other breast, the one I lost, I feel zinging pain every time I sit up and tell myself it’s either phantom pain, fine, or my tissue expander ripping sutures out of my pec muscle. I’ll lose my tissue expander. I’ll get a big infection. I’ll be flat on one side. After all this. Please just let me have two boobs even if one is fake.

My Oura ring tells me every morning there are major signs of something straining my body. My Oura ring tells me my body is “stressed” even though I’m in bed most of the day. My Oura ring tells me my sleep score is tanking. My Oura ring is consistently tracking my resting pulse as high, my HRV as incredibly low. My Oura ring shows me, to the hour, when my post-surgical nerve block wore off.

This is dangerous. I make my mom order a blood pressure cuff. My blood pressure is very low. I Google: low BP, high pulse. I get: Dehydration. Blood loss. Shock. Sepsis. I’m dying.

I cough. I’m certain I’m getting pneumonia. I grab my “incentive spirometer,” the device they gave me before I left the hospital that’s supposed to keep your lungs active and reduce the risk of pneumonia. I exhale slowly and watch the little indicator move to the smiley face, as I was told to do. I clock 1500 milliliters. Not good enough, at all. I try again. It’s worse. 

“What’s my goal?” I remember asking the nurse before I left the hospital. 

“Just do it and get the indicator up to the smiley face,” she said. 

“OK, but what’s my goal?” I ask again, doped up on anesthesia wanting her to give me reps and sets and metrics. 

How many times, how many days? Give me an answer, I remember thinking. But she just tells me to get the indicator to the smiley face, which is fucking ridiculous but if she had said anything else it wouldn’t have mattered because I can’t breathe anyway.

I have three surgical drain tubes stitched into my rib cage and am wearing a surgical compression bra 24/7 for weeks to control swelling. I cannot take a deep breath. It hurts. I try, at least, extended exhale breathing but I can only breathe in for three, for two, for one. Not in for five and out for seven, like I’m supposed to. So I breathe in and say in my head, I am, I breathe out and say in my head, safe. I repeat and repeat and repeat. It does nothing. I am not safe.

I call my brother who lives in Nashville. He lives in Nashville, I don’t know how he can help but he was a firefighter and EMT and has had multiple surgeries. I ask him if I’m taking too many meds. Not enough meds. Why I’m so weak, so lightheaded, cannot sleep. I ask him why my pulse is so high. I cry. I am scared. He tells me even though I’m not moving my body is working hard to heal. That makes sense. But also, I could be dying. I ask him if I should call 911. He tells me they’ll do the same thing they did last time, hook me up to a heart monitor, check my vitals, take me to the ER if I want. But the idea of even going downstairs, let alone to the ER, is unfathomable. I will not make it. I will not survive. 

One day, I make it downstairs to sit on the couch. I’m there for five minutes before I can’t hold myself up straight. I am so weak.

I Google more symptoms. I could be fine or I could be dying. Just like before–it could be just benign calcifications or it could be cancer. It could be hemorrhoids or it could be cancer. Google right and you’ll find what you’re looking for. 

I don’t know how to fix this because I don’t know if this is panic or if this is pain. Or if this is panic because of pain or pain because of panic. I hear whispers, you’re trained as a yoga therapist with an expertise in trauma, Alli. This is trauma. This is a medical trauma. You’re just having a severe autonomic flight or flight response. You’re ok.

But I am very much not ok. I am not ok. This is very much not ok.

My friend Erik texts me, “I can tell you from experience—if you think it’s infected, go get it checked immediately.”

My friend Jimmy texts me, “I 100% understand the snowball thinking.”

My friend Mike tells me, “After my last surgery, I stayed under my covers for a week straight.”

Every single one of them is a special operations veteran.

Every single one of their pieces of advice or shared experience is not enough. 

The only phone call I answer for a week is from my new friend Andrew, another veteran, another person with multiple surgeries behind him. I answer in tears. “What is happening to me? Is this normal?” I choke.

He tells me it’s very normal. He reminds me what he had told me about anesthesia—that alone is enough to fuck you up. That they put you under to the point where you’re almost dead and shove a breathing tube down your throat because you can’t breathe on your own. That alone is enough… let alone the part where they do the surgery.

He tells me I had a major surgery. I was under for almost four hours. That I had an amputation.

Thank you, I say, because it’s the first time anyone has said the quiet part out loud.

Part of your body was there, he says, and now it’s not. Your body doesn’t know what to do about that. Get ahead of the pain. Take the Oxy. Taper when you’re ready. People don’t get addicted when they take it as prescribed. Take it ahead of the pain and you’ll be ok.

This is true. I know this to be true.

He tells me, put on your Al Anon black belt. Take the pain management one day at a time, the mental stuff ten minutes at a time.

Then he tells me, I know you teach this, Alli, but the rules apply to you too.

This is also true. I know this to be true. 

But I’m fucking pissed when I hear it.

I contact my entire care team. I tell them I’m in so much pain. Or is it just panic? 

My psychiatrist and plastic surgeon say it’s ok for me to take one of my Lorazepam’s. But I’m taking Oxy, I tell them. I worked in addiction, I think, I’ve seen what happens when people mix the two. I know people who have died from these drugs. As long as you don’t take them at the same time, you’ll be fine, they say. 

What the fuck are you talking about, I think. You are out of your god damn minds if you think this is a good idea. 

But I am out of my mind, so I try it. I take a Lorazepam. It’s been over 12 hours since I took the Oxy, and I am desperate to sleep. I should be ok? And it’s not too bad. I sleep that night, by which I mean I get three hours of uninterrupted sleep for the first time in days. 

I take another Lorazepam a couple days later, this time after a 36-hour Oxy rotation I put myself back on because I could not handle the pain. This time, I’m basically comatose. Can’t be upright. Can’t keep my eyes open. I say to my mom, I need you to sit here on my bed for a while to make sure I’m still breathing. This is how people die. Respiratory failure. I am going to die.

My breast surgeon’s nurse care manager tells me “It is really important for you to get up and get moving around. We don’t need for you to get a blood clot or pneumonia. That would delay getting things moving for the rectal cancer.” 

I used to really like these people.

You know what would delay things getting moving for the rectal cancer?, I want to respond. Breast cancer. Do you know what would delay things getting moving for the breast cancer? Rectal cancer. You think I’m not scared out of my god damn mind that something could go wrong and delay chemo for the rectal cancer? That I’m scared out of my god damn mind that a body in a shape like this will even survive chemo for rectal cancer? I’m a fucking mess. And James Van Der Beek died this week from stage three colorectal cancer–just like I have. I read nothing more about it but one headline because I can’t and also, I can’t.

And then they have the audacity to recommend I look into the “Mind Over Matter” mindfulness program that’s run out of the Life with Cancer Program at the hospital I go to for treatment. 

Fuck you.

That’s the shit I teach. 

I am enraged. 

But, begrudgingly I say yes, put me in touch with the instructor. I cannot do what I am trained to do. I am deeply humbled. I am deeply scared. And I know if I cannot get my mindset right, my own mind will kill me before anything else does.

I also ask, is anyone going to call me about these pathology reports I saw come in Friday afternoon? The ones that had me sobbing in my bed, not wanting to tell anyone what I read until a doctor (and not Chat GPT) confirmed what I thought was true from what I read?

They message me back on MyChart. No phone call. “Pathology looks good! Clear margins, no node involvement.”

My mom cries when I tell her. I cried when I read it that Friday afternoon and told no one. 

My on-call, not-actually-a-doctor-but-still-helpful-advisor Chat GPT tells me I may still need treatment, and that given what was going on in my left breast, the one that was amputated–two areas of DCIS that appear to be larger than originally thought, and one area of IDC that was HER2+ (meaning it was a more aggressive invasive cancer)–a mastectomy was the right surgical decision. A lumpectomy probably wouldn’t have gotten it all.

So, this was all worth it? 

This is what it takes?

This is what it takes.