Surgery: Part II

When I woke up, I was in recovery, and I was very disappointed that my breast surgeon, Dr. Dupont, had had to leave because I wanted to tell her that I had changed my mind and didn’t want to go through with the surgery after all. I guess I thought it would be funny.

I was extremely nauseous despite the hard core anti-nausea medication they had given me before surgery. You may recall my discussion on the tri-pack of Emend pills that I would take on the day of and two days following my Adrimycin and Cytoxin treatments, the pills that cost roughly $120 each. Well that’s what they gave me, except intravenously. Anyway, apparently it didn’t do the trick, because I was incredibly nauseous when I woke up. I remember telling the attending nurses this and explaining to them that, for whatever reason, Phenergen seems to work the best for me. Of course I didn’t know what I was talking about – I was, after all, just a patient, and right out of surgery to boot – so they gave me Zofran instead, which I know makes my vision blur, my head feel dizzy and swimmy and my body feel very tired. I guess it must have helped when they gave it to me with all of my chemo treatments, but I also remember it making me feel pretty bad.

So the nurses injected some stuff into my IV and asked if I felt better. I said yes, because I thought I did, but then changed my mind and told them I still didn’t feel well. I asked if they had given me Phenergen, they said no, and I asked if they would. They injected some stuff into my IV and asked me a couple minutes later if I felt better. I did, and not long after that a guy came to take me to my room. The whole time I had been talking and apologizing to the nurses. I don’t remember what I was talking to them about, but I remember that I kept apologizing for a) not feeling well and not being able to better physically accommodate whatever they were trying to do and b) for talking so much.

When the guy came to take me to my room, I still wouldn’t shut up or quit apologizing. I asked him what his name was, told him my name and that it was nice to meet him, and then said something to the effect of, “I hurt pretty bad and don’t feel very good, otherwise I would turn around to look at you when I talked to you, but it hurts a lot and I can’t do that right now. I’m sorry.” He assured me that it was alright and told me that I shouldn’t try to move.

There were a couple of people in my room when we got there, I think. My mom, maybe, and possibly someone else. I can’t really remember. What I do remember, very clearly, is the other guy coming into my room to help the first guy move me to my bed. I couldn’t really do any moving on my own – I think I was still paralyzed from the injections they did in my back – and I found it upsetting to have to be moved and was embarrassed when they had to kind of roll me partially on my side to get something under me or out from under me or something and I knew that my hospital gown wasn’t covering my ass. I tried to kind of reach back and cover myself, but it hurt to move and they told me to stay still. The whole thing was pretty quick, but I still felt humiliated and helpless. They each took hold of the sides of the pad/blanket thing that was under me and lifted me from the gurney to my hospital bed. They set me down very gently, although I was in a somewhat awkward position – a little too low and too far to one side. There was absolutely no way that I was going to be able to move myself into a more comfortable position; there was this agonizing burning in my chest, a pain that made me feel afraid to move the upper part of my body, and, like I said, I still felt somewhat paralyzed from the middle of my back down. The guys had already left, so the nurses moved me up and over using the pad under me and I was more comfortable.

For a while I drifted in and out of consciousness, fighting very hard to stay awake and talk to my family and friends that were in and out of the room. At some point I mentioned how badly I had to pee and the nurse who happened to be in the room helped me sit up. Pulling on my arms at all was completely out of the question and moving my shoulders would have caused considerable pain, so all assistance had to be directed to the middle of my back. The nurse positioned her hand on my back and gently hoisted me forward, and I shakily swung my legs over the side of the bed so that I was sitting facing the bathroom. Nausea immediately swept over me. I sat there on the edge of the bed considering my situation, trying to decide how far I’d be able to make it across the room before I vomited. My head swam and I felt a cold sweat coming over me; I felt very unsteady sitting there, my body moving in a slight circular motion. My arms hung awkwardly at my sides, lightly resting on the edge of the bed and pulling uncomfortably on my pecks regardless of how I placed them. A hot wave washed through me, settling most intensely in my chest. The area around my mouth felt cold and numb and cold pricks ran down my jaw line. I could feel the sweat forming on my back, chest and forehead and the breath being shallowly drawn in through my nose and mouth became noticeably cooler.

The longer I sat there the worse I felt, and at one point when I looked up at Bryan, who was sitting in a chair facing me about ten feet away, I knew that my discomfort and feelings of illness were written all over my body. He sat there watching me, his eyes over bright and his hands clamped together, pressed against his mouth. I tried to imagine what he was thinking, how helpless he must have felt, and I offered him a weak smile. He did not smile back – he did not move at all.

I knew that I could not possibly get up and make it to the bathroom without puking, and I knew, given the level of pain I was experiencing already, that retching would be unbearable. So I looked back at Bryan and decided to end both of our immediate suffering and lay back down. The relief was immense.

Not too long after that someone, my sister, maybe, mentioned that they were hungry. I became excited by this and suggested that they should all go eat while I took a nap and we’d visit when they came back. They thought it was a good idea and I fell asleep almost immediately after they left.

A couple hours later I woke up again and felt much better. Bryan and his mom were in the room and I told them that my bladder was going to explode. I hit the nurse summoning button for the first time and two of them came in. They helped me sit up and made sure I didn’t fall over when I stood, holding their hands tentatively near me but not touching me. One of them walked next to me while the other pushed along the computer station I was attached to. The machinery I was hooked to by IV’s, wires, cuffs and cords was large and made an annoying beeping sound every couple of seconds. It monitored my vital signs, administered huge bags of saline, and stayed plugged in when it was next to my bed, although could be unplugged for short periods of time for walking or peeing purposes. Naturally, all of these attachments coming down my sleeves and through the back of my gown made it very difficult to maintain decency, and the best I could do was to hold the right side of my gown over my ass while the left side stayed tangled up in cords.

I successfully made it to the bathroom without falling over, puking, or even becoming nauseous. I was pleased. Much to my dismay, however, the nurses did not close the bathroom door behind me, apparently worried that I would fall in the toilet and drown without their hearing the splash. So the nurses and Bryan sat there listening to Joey Falls cascade at full force for no less than 40 seconds and trail on and off for another stretch equally as long. I have never peed so much in my entire life.

I carefully got up and was confused to find out that there was a bowl attached to the toilet that caught all of the pee and toilet paper. I apologized to the nurses only to discover that they were writing down how much urine I had expelled. Slightly disgusted, I made my way over to the sink and began washing my hands one at a time while I tried to hold my gown closed. I heard a man’s voice in the room, and I thought it must be my plastic surgeon, so I tried to hurry. The nurses partly closed the door when they finished logging my fluid excretion rate so that no one in the other room could see me at the sink. Under this pretense of privacy, I turned my back as close to the wall as I could and let go of my gown to hurry up and get my hands clean, then grabbed some paper towels to dry them. Suddenly the doctor came bursting through the door, swept up to me and snatched my gown down to look at my bandaged wounds. As he tore the snaps apart and exposed my entire chest I looked up at the bathroom door and was horrified to discover that The Interns were all there, watching. I tried very hard to pull my gown around, but it was my left side that was facing the door, and the wires and tubes would not allow it, so there I stood with only my arms and stomach covered, the door and sink mirror revealing all else to the eyes crowding the bathroom.

“Looks good,” he said casually, and hurriedly snapped my buttons up and whipped out of the room, saying “I’ll be back by tomorrow” as he left.

Stupefied, embarrassed, I finished drying my hands with the paper towel I was still holding and missed the trash can when I tried to throw it away. Not trusting myself to bend down, I left it on the floor and pushed my computer station out into my room, one hand behind me holding my gown. The nurses intercepted me and helped me back to bed. I heard voices outside my door as I carefully situated myself in bed; the distinct voice of Becky B. and the muffled voice of the person she was talking to – I guessed Bryan’s mom, who had left the room so that I could get out of bed and show my ass in relative privacy.

The nurses left and in came Bryan’s mom and Becky B. with a card and a very soft stuffed dog in hand; in that moment, I became happy again. The four of us chatted for a while, then Bryan went to smoke and his mom said good night and it was just Becky and me. I seized the moment and asked Becky to close the door and get my pajama pants that I had been wearing before surgery (I learned last time that jeans are not the optimum pant materials to try to get into after surgery and decided that I would be much better off with PJ’s). She got them out of the plastic bag on the window sill, brought them over, and then, because she’s a wonderful friend, helped me put them on one leg at a time. I worked my way back into the bed and felt relieved that I would not again be caught with my pants off.

Day turned into night, everyone left, and I entertained myself with the Nintendo DS and television. The nurse came in every couple of hours to take my blood pressure and ask if I needed anything. I drank copious amounts of grape juice. I stayed awake most of the night. The generic Percocet made my skin dry and extremely itchy and it wore off every three hours, which was an hour sooner than I was allowed to have another dose, so I would hit my nurse summoning button and answer “I hurt” when the remote control would ask me what was the matter. This procedure would produce a nurse with a shot of morphine and then I would feel better and sleep for about 20 minutes. One time, in the middle of the night, I tried to wait out the entire four hours before I asked for more pain medication. I discovered that that was a terrible game that even the morphine couldn’t quite fix and I didn’t do it again. “Don’t let the pain get away from you,” I repeated in my mind at the first sign of the monster’s wakefulness, and then promptly told the remote control I hurt.

When 5am rolled around I thought about the previous 5am that I was there for and how fucked up I was now. I turned the Nintendo DS back on and half watched movies I’d never heard of.

Surgery: Part 1

When I had my first surgery, the lumpectomy, I severely underestimated the overall effects it would have on my physical well being. After waking up and realizing that a lumpectomy with lymph node removal was quite a swift kick in the ass, I had no illusions that a bilateral mastectomy with reconstruction would be any form of easy. As a matter of fact, I fully expected to be in pain for several weeks and resigned myself to a lengthy recovery period.

I was prepared for the loss of strength and range of motion; I was prepared for the loss of independence and personal ability; I was prepared for the tired haze of pain killers; and I was prepared for those times when I would inevitably wait too long between dosages and lose control of the pain.

What I was not prepared for was my role as a circus side show freak.

——————————————

The first time I was not as nervous in the waiting room as I was this time — I did not cross and uncross my legs, bounce my foot, make stupid jokes or leap out of the chair when I was called to check in. The first time I had to wait for a while before I was called back to the surgery prep area, and by the time I was finally sent in for surgery, everyone was at Moffitt and I had had plenty of time to chat with all of my friends and family members that attended the cancer removal event, two at a time.

This time, however, things went much more rapidly, and by the time I was brought back for prep my family was still 45 minutes away.

At first things seemed fairly similar to how they had been with the lumpectomy; there was my one attending nurse that had me pee in a cup, put all my clothes/shoes/etc. in a bag, re-dress in the hospital gown/compression socks/warm socks, and then get under the covers on the gurney, which she then covered with some nice warm covers strait out of the cover warming machine. She then hooked me up to the heart monitor, put an IV in my left hand, started a saline drip, and left Bryan and I in the curtained cubicle. Things went more or less exactly how they had gone the first time, so I was prepared to wait quietly for the doctors to be ready for me in the OR. With the way things were rolling, though, it didn’t seem that I’d be waiting long, so Bryan went to find out how far off my family was.

The nurse told me that the surgeons and the anesthesiologist would see me before I went back, and by the time Bryan returned to tell me that my family was almost there, Dr. Dupont (the doctor who had done my previous surgeries) was in the room talking to me and doing her best to soothe my nerves.

Bryan had informed my family that I was in the same little curtained room as I had been in the first time so that they’d be able to find me easily when they arrived. As it turns out, all they had to do was look for the tumultuous sea of scrubs and white coats, though, because all of the sudden there were five young people in white coats and multiple people in scrubs clamoring over one another at the enterance of my tiny little curtained area.

My mother appeared in the midst of this sudden influx of medical personnel and parted the white sea to come give me a hug.

The Young White Coat Association took this as their queue to strike up conversation with me, and a tall, slender, pleasant young woman introduced herself to me as being from “plastics” and asked me how I was doing. I told her I was fine,  at which point a thin young man wearing glasses piped up and said, reading from a clipboard in his hand, “Good morning… Ms. Dupont, is it?” I raised my eyebrows at him and said, “I’m fairly certain that Ms. Dupont won’t appreciate you operating on her while she’s trying to work on me,” and then pointed behind him at Dr. Dupont. Dr. Dupont, hearing her name, laughed and introduced herself, informing the five youngsters that she was Dr. Dupont and I was Ms. Bartell, the guest of honor. The young woman laughed and said, “Well, at least we made a good first impression,” and then the young man laughed and apologized, re-introducing himself and using my actual name. I looked at my mother and smiled, indicating something to the effect of “What the hell did they send these kids in here for?”

The young man proceeded to inform me of the procedure I was there for, saying “so today we’ll be doing a mastectomy of the right side with latissimus dorsi flap reconstruction,” which, in non-medical terms, meant they were going to cut out my right breast tissue and use the muscle out of the right side of my back to repair it. Of course that was all wrong, because I was there to have a bilateral mastectomy (both sides) with reconstruction that did NOT include cutting the muscles out of my back, something that had been decided three months prior. “NO.” I said, with a certain finality and anger. “That’s wrong.” The five of them kind of looked around at each other and at each other’s papers and mumbled some “Oh’s” and “Hmm’s” and laughed nervously. I then directed my attention past them to Dr. Dupont, who was entering information on a computer, and said, “Dr. Dupont, we are all clear on what is supposed to be going on today, right?”

She turned around on her stool and looked at me, allowing the conversation that had just occurred behind her to fully register. Dr. Dupont is a very intelligent, experienced doctor who, it seems, has the ability to record everything going on around her while directing her full attention to a particular task, easily rewinding and fully comprehending something else that happened in the same space within a matter of seconds. “Yes, yes, yes,” she assured me, getting up from her seat and walking over to me, “Everything is all clear, I think they just have some old information is all. We know what’s going on though, don’t worry.” She gave me a hug and then turned to the five stooges and said, “I think perhaps you have the old reports. That was the original plan, but then some things changed.” Apparently this was code for “God damn it look up the current information right now and stop saying stupid stuff.” My mother told me a few days later that when Dr. Dupont turned around to answer my question about having things straight, she followed her gaze to my heart monitor, positioned slightly behind my left side, and saw that my blood pressure had shot up from a nervous 115/85 to a distressed 135/100.

The young woman then tried to reassure me and said, “Well, don’t you worry, we can do whatever you want us to do.” I thought to myself that I didn’t want them to do anything to me, but instead laughed and said something about a nose job.

In a further attempt to reassure me, Dr. Dupont wrote “NO” across my back in large capital letters, since she would be leaving after she was finished with her part of the surgery, the mastectomy part, and I was worried that perhaps Dr. Smith’s team may not have gotten the memo. It was an action made in jest, really, and there was a lot of laughing that accompanied it, but it did make me feel better.

Bryan had left right before that whole fiasco to get my brother, who came back right after the young doctors had finished upping my blood pressure. It was clear that it wouldn’t be long before I was wheeled back to the OR, so my mom asked if I wanted her to go see where Carrie was at. I told her yes, but that she’d better hurry. I don’t remember exactly when my brother left, because by then the attending nurse had given me a shot of something to calm me down (and, perhaps, relax my memory), probably compliments of Dr. Dupont. Whatever it was made me feel much more relaxed, although not exactly happy or confident in Dr. Smith’s medical team. Anyway, at some point between my brother coming back and my mother going to find my sister, I found myself alone among a bunch of medical personnel that I had never met before in my life.

At that point, the point where I found myself alone, the anesthesiologist and his student follower appeared. They quickly moved in, closed the curtain, pushed my bed toward the opposite wall, had me sit up with my legs off the side of the bed with my feet on the seat of a chair and my hands on the back of the chair so that I was hunched forward with my back facing them, checked with Dr. Dupont to make sure that the “NO” wasn’t for them, and proceeded to preform some kind of spinal block, the name of which I forget at this time.

The anesthesiologist didn’t exactly explain what was going on to me, per se, but I got the gist of it while he was explaining it to his student, and then fully understood as he was doing it.

He felt with his gloved fingers up and down both sides of my spine, first the left side, then the right, and drew dots on certain points that corresponded with certain medical mapping terminology, four on each side, eight in total. He cleaned my entire back with antiseptic, I believe after he drew the dots, although I could be wrong, and then began explaining to the student how to do the injections as he performed them. “You push the needle in to the rib, then angle down and push under the rib until you feel a pop.” As he explained what he was doing, he pushed the needle in to my rib, stabbing it lightly with the needle point, then angled down, pushing under my rib, the flat part of the needle pushing my rib up with an unnatural force, and stabbed something beyond the other side. There was something that he did with the syringe that he did not explain out loud to the student, but each time there were a few moments of slight needle movement between when he got the needle to the right spot and when he injected the anesthesia. When he finished doing whatever he did, there was a slight increase in discomfort before he slowly pushed the fluid in, which caused a great deal of burning and pressure.

He did the four on the left side first, the lowest two causing the most amount of pain. When he finished the last one he asked the student if she wanted to do the other side. “I’ve only done it once before,” she responded, and then I almost leaped off the table. “Do NOT use me as your experimental dummy,” I wanted to tell him, “YOU do the injections and just let her watch.” But then I thought, “how else is she supposed to learn?” And I kept quiet, thankful that at least it was me and not Carrie or some little old lady. “Alright,” the anesthesiologist said to his student, “How about you keep watching me and then you can do the last two.”

God damn it.

At this point I heard Carrie’s voice on the other side of the curtain. I really wanted to shout to her to come in, wanted her to be there, but I didn’t want to make any sudden movements, or make the student nervous with an audience, so I kept quiet and held on for the ride.

When the student had her turn, she messed up both times. The first time she dug into my rib bone repeatedly, jabbing so hard one time that I could feel the needle dislodge itself from the bone when she withdrew. When she angled down, she either drove the needle in too far or not far enough, causing her to stab my rib once and to pull out and retry twice. When she did the syringe change out / needle jiggling thing there was more discomfort than when her mentor did it, and when she pushed the fluid in, she also pushed the needle in, and she pushed too fast, causing more intense burning and pressure than before. The second rib bone was slightly more fortunate than the first, and she only had to pull out and retry once, but she still pushed the needle in with the anesthesia and injected the fluid too fast.

When they finally finished, everyone was pretty much ready for me to go back into the OR, and I was already feeling exhausted. Carrie and my mom gave me a hug and said they’d see me when I got out, standing by my bed for the five minutes before I was wheeled back.

Once I got back to Room 5 (which was the same one I had been in the first time, someone told me) they moved me from my bed on wheels to the operating table and then started sticking electrodes to my front and back. When they were hooking them up to my back I had to sit up from a laying down position, which I found unusually difficult. We discovered that either I was dead or something wasn’t working properly. As it turned out the electrodes they were trying to use were faulty, and after trying to reconfigure them three times, they found a new set. By the fourth time they needed to put the electrodes on my back, I discovered that the spinal/nerve block they did on me more or less paralyzed me, and I was no longer able to pull my back up off the table without considerable assistance. They finally got the electrode situation worked out and I was allowed to lay down again.

They put a pillow under my knees and then a woman came to the foot of the table and told me that she was going to put a blood pressure cuff around my calf, warning me that patients often complained about how hard it squeezed. When she turned it on it came to life and started to constrict. It became as tight as your usual blood pressure cuff and then kept on squeezing; it squeezed until there was a tight pain in my muscle and then continued to compress; it continued compressing until there were white electric shocks in my leg, and just when I thought I couldn’t stand it anymore, it finally released. “Yeah, that is pretty uncomfortable,” I said to the nurse. She smiled and told me that “It only goes that tight the first time. After that it’s much better.” It began to constrict a second time, but thankfully the nurse was right and it didn’t hurt nearly as much.

Dr. Dupont came into the room and asked me how I was doing. I told her I was ok and she told me I was a trooper.

Then I went to sleep.

Long Term Effects

I’m at the Blood and Cancer Disease Center getting my tri-weekly Herceptin treatment. Three recliners down from me is a woman with a dark pink handkerchief tied on her balding head. I guess that she is in her 40’s. She looks drained, determined and focused — ready and only slightly anxious. She’s reading a Readers Digest, using her blood work report as a bookmark.

These are all things that I noticed only after I was able to draw my attention away from the contents of the bag hanging from her bag pole: three large syringes filled with bright red liquid.

Adriamycin — the Red Devil.

It is a strange revulsion I have to that stuff; a kind of subconscious revulsion that makes me feel antsy and nervous, like it might somehow get out of its bag and into my veins if I don’t keep a close eye on it. But while I can hardly tear my eyes away from from the syringes hanging there, I also don’t want to look at them, as if, perhaps, the vile stuff they contain might notice me staring at it.

As I consider the immediate effects of Adriamycin on the body and the long term effects it has had on my heart, and as I begin to recall my worst days with the stuff, I remember with total clarity why I decided to have this surgery coming up on Tuesday in the first place. My uncertainty subsides, although only slightly, and I begin to feel more like I am doing the right thing. I am a little less apprehensive and a little more confident.

The nurse takes down the bag with the syringes and sits down next to the woman in the dark pink handkerchief. The nurse begins her slow push, a saline drip diluting the life sucking fluid to a slightly less corrosive consistency.

I cringe and hope that I what I am doing is enough.

Dear Mary, Life Is Unfair. (I Love You)

Imagine your life as it has been for years, moving along like everything is just fine, wandering through your little world in a haze of several hundred tomorrows, all filled with the smiles and faces you know and love. The flowers are there and, sometimes, you stop to admire them.

Imagine all of the things you want of yourself – the things you want to do and see, the places you want to go, the things you haven’t had the courage to say… yet… and the things you aspire toward. The list is huge, and some things are crossed off, but other things have been pushed into the margins somewhere, waiting for the “right time” or the “perfect place” or some motivation or ambition or sequence of events or something.

Imagine that , suddenly, you discover that your world has been infiltrated and is being quickly taken over. When you look through the window you can see the onslaught with utter clarity – the towers and rooftops are burning, glass is shattering all around, the structural supports are crumbling away and all the little civilians down below are being beaten, raped and brutally murdered. You want to help them, fix it and make the aggressors disappear – but there is nothing you can do.

There is nothing any of us can do…

except cry.

Like the Skin Under Your Fingernails

It hurts.

Oh yes… it hurts.

It isn’t muscle pain – no, it doesn’t hurt when I lift things or move things or crouch a certain way – and it isn’t bone pain – I don’t have that flu like aching/throbbing throughout my body.

No.

It’s my skin.

It’s every single layer of every inch of my skin, burning, tearing and screaming with every friction inducing movement.

It doesn’t matter how soft the touch is, how soft the material is, or how cushioned the area is… it hurts. Wearing clothes hurts because they just can’t be soft enough and they slide and pull; laying in bed hurts because there is pressure, soft, cushioned pressure; being touched hurts, even by the softest most loving and well intentioned hands, even just a hand on my shoulder, even my own hand on my own arm or my own fingers through my own hair.

A light hand on my forearm asking if I’m ok brings with it a hot wave of pain through the entirety of the skin between my fingers and elbow, and a sweet kiss on the cheek makes me dizzy with aching and brings tears to my eyes.

The least painful position to be in is standing with my hands resting on the backs of chairs or on a counter top or anywhere but by my side, and the most comfortable thing to be in is the softest blanket I could find, ever so carefully and loosely wrapped around me so that I don’t need to hold it or apply unnecessary pressure to any part of me.

I wonder how I’ll fall asleep tonight.