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Thursday, March 31, 2022. It had been one week. One week since deciding on my surgery. One week of strange, nightmarish dreams, revolving around hacked body parts, botched medical procedures, and medication failures. A cloud of dread loomed over me, wherever I went. And just when I had a moment of distraction – a solid couple hours to focus on my job or think about The Music Tarot project – a splash of psychological rain would jolt my memory back.
Oh yeah, I have breast cancer.
I was in this weird dual mindset. On the one hand, I was human, and humans get cancer sometimes. I was getting treatment, the tumor was Stage 1 as far as they knew, and the doctor doing my surgery was very experienced. On the other hand, I had done some terrible things in my past, and hurt people. I was getting my payback. I deserved to suffer.
If you do what you should not, you must bear what you would not.
The phrase kept rolling through my mind. This was my pain to take. This was the result of my mistakes.
10:50 AM. I turned the door handle of the breast clinic, and Miah and I entered the waiting room to check-in for my pre-surgery nurse visit. Nurse K took us back to an exam room. She pulled up my chart and began to discuss how to prepare and what to expect. I told her I brought a list of questions. She asked me to hold off on asking them until the end, because she might answer some of them while going over everything.
She started with my medications/supplements list, which she had printed out, along with a bunch of other paperwork, sitting on the desk. Each medication/supplement contained one of the following instructions – take as usual, stop taking one week before surgery, or do not take the morning of surgery. I frowned, “I can’t take my supplements for 7 days before surgery!?”
“No,” she answered.
“Why not!? I need those supplements to help with my migraines and my sleep!” my anxiety smacked into the ceiling.
“It’s a precaution to make sure there aren’t any bleeding issues,” she seemed annoyed by my concern.
“Those supplements provide a major quality of life for me!” I was practically crying. “So, I’m going to be in extreme pain, and not sleeping for a week before my surgery,” I complained.
“Yeah, I guess so,” she responded. She was frustrated with me, I could tell. This bothered me. I was facing an extremely scary procedure. I had a long history of chronic pain, which she couldn’t understand or appreciate in a 30-minute appointment. I wanted compassion. I got annoyance.
“There’s no way I can stop the magnesium, it’s critical to make sure I don’t get constipated from my pain medicine,” I dug my heels in.
“Fine. I’ll ask the doctor if that’s ok. She’ll probably be ok with staying on that one.”
Next, she talked about preparing my body for the day of surgery. “Did you get a green bag with a binder of supplemental information and bottle of Hibiclens antiseptic soap at your first appointment?” she asked. I had, but I had thrown the bottle away because I didn’t understand what it was for.
Honest to God, I thought it was some sort of weird party favor item, “You got cancer, here have some special soap.” It made no sense to me at the time.
“Oh, that’s why the soap was in there, to prepare for surgery!” I exclaimed. I told her I threw it away because I didn’t understand why they gave it to me.
“It’s ok, I’ll get you another bottle.” She probably thought I was the dumbest patient ever. I had barely read any of the supplemental information in the binder. I had thrown away the bag and bottle of soap. I had wanted the tiniest number of cancer-related paraphernalia in my house as possible.
She explained how to shower the night before - scrub up and leave the soap on for several minutes, then rinse, dry off, but do not use any lotions. Then take another shower the morning of surgery, using the antiseptic soap again. If my skin became irritated after Shower #1, I could skip Shower #2. I hated the idea of not using any lotion.
Then she pulled out a sheet to explain sentinel lymph node mapping. She said they would schedule this procedure for the morning of my surgery. It involved injecting a radioactive dye in my breast, and then allowing the dye to move through my body to the nearest lymph nodes. Images would be taken to see the lymph nodes that absorbed the dye. During surgery, some of those nodes would be removed to check for cancer. I was freaked out. The info sheet said "this injection can be painful." I was picturing some kind of out-this-world, extreme needle, followed by intolerable pain.
The lymph node mapping discussion led to a conversation about lymphedema, which is a condition that can develop and cause swelling and discomfort. Anyone who has their lymphatic system messed with is at risk. And it is a lifetime risk. I started getting more and more anxious about what sounded like massive, body-altering, permanent changes ahead for me.
After that, she held up a surgical drain for demonstration. There would be two of these drains inserted in my body – one on each side. The thing had a tube that appeared to be about 24 inches long. “How much of that is gonna be inside my body?” I asked.
She pinched about 12 inches of the drain tube and explained it would be snaked around inside my chest, in a sort of S-shape, so a decent amount of the tube would be secured in my body. This distressed me greatly. I kind of stopped listening at this point. Miah and I had already talked about the surgical drains and had agreed it would be his role to take care of them. He leaned forward and listened closely to Nurse K. He even seemed chipper as he took the drain from her and demonstrated the process back.
“Oh, I get it. It’s like a vacuum, it works using a suction system,” he commented.
“Exactly, so you just want to make sure you’re emptying it twice a day, and recording the amount of fluid output,” she held up a worksheet for tracking the information. “After the amount is less than 30 mL for 2 consecutive days in a row, the drains can be removed. Just call the breast center first to let us know you’re coming, and one of our nurses can remove them that same day. You don’t need to schedule an appointment.”
I asked how long surgical drains typically need to stay in the body. She said 7-10 days is the average. In my usual fashion, I was trying to pre-plan my schedule. If my surgery was on Wednesday, Apr 13, I was hoping to have my drains removed no later than Friday, Apr 22. Since the breast center isn’t open on the weekends, if I didn’t have my drains out by that next Friday, I’d have to wait until the following week.
Next, she got to the part about nail polish, “You need at least 2 fingers on one hand with no nail polish on them.”
“That’s not what Doctor L said. She said they don’t do that anymore, and I can leave my polish on,” I objected.
Nurse K shook her head, “Doctor L should know this. I don’t know why she told you that.”
The nail polish! What a petty thing to latch onto, but I was irate. My plans of maintaining this one part of my beauty routine, while a huge part of my femininity was chopped away, dissolved into dust. I became more and more zombified as the appointment concluded. I pulled out my list of questions and rattled through them, scribbling down answers I could barely read. Coherent thoughts became less accessible as I collected the paperwork and bottle of antiseptic body soap.
I don’t think Miah and I talked much on the drive home. A heavy blanket of unsettled fatigue had muffled our abilities to communicate. I walked into the house, put the paperwork on the shelf in my office, and decided not to look at it again for at least a few days. A few hours later, Nurse K sent a message via my secure health app to let me know Surgical-Oncologist-Doctor L said I could continue taking my magnesium. It was a small victory.
Friday, April 1, 2022. I switched gears and released my fourth song, Joined Forces / Three of Pentacles. I’d been following my Marketing Plan and releasing The Music Tarot songs every 2 weeks. My social media posts may not have been the best and most direct content, but at least I was taking action and sharing my songs with whatever energy I had left. I was happy to be making progress, but my happiness was shadowed in worry.
I was worried about my body. I was worried about my future. I was worried about Miah.
It was a dark week, as I released my song about people coming together to create something big. Here I was, finally pursuing my dream project, while managing a deep cut of fear. The intense burn of uncertainty was practically blinding. And yet, I could sometimes shield my eyes, just enough to block the reality out of view, and pretend nothing was different. It was interesting, noticing my discomfort and pain management coping skills. They had evolved so perfectly to fit my oddly wired mind.
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End of 11 - Pain Management