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.

Surgery: FYI

Just FYI, my surgery is going to be Tuesday, July 29th at Moffitt.

I do not know the time, or for how many days I will be in the hospital. I know that, from overhearing a conversation in pre-op at Moffitt when I had my last surgery, it will be at least over night.

Last time my surgery was at 11am and went until 4:30pm. That was for a lumpectomy with unexpected complications, so perhaps a double mastectomy with reconstruction will be the same / less time…. who knows.

Anyway… that’s when/where it is, and if you happen to be in the area and want to come visit me I would undoubtedly love to see you… even if I am doped up and don’t remember.

So, yeah. That’s that.

I’m not gonna lie. I’m really quite nervous about it. I’m not sure how I’m going to handle it or how I’ll feel once it’s done. I’ve never wanted even augmentation, never mind completely fake boobs…. I still don’t feel normal after a lumpectomy, and have no idea how this upcoming surgery is going to affect me. My left breast is quite normal and, in my opinion, quite nice, so I’m rather hesitant to have it cut out… but, on the other hand, I really don’t ever want to have breast cancer again (or any kind, really), so I’m willing. It’s a paradox. A highly debatable paradox.

Honestly, I understand the point of view that would have me stay like I am and not succumb to science’s evil, breast removing ways… but, I also totally understand not wanting to die of cancer. That’s really the more scary thought. Sure, my kids might be allergic to nuts, but at least I’ll have kids! Right?

Right.

Don’t tell me if I’m wrong.

If I’m wrong, then fuck me. I’m screwed. It’s not like I wanted it. It’s not like I preferred it. It’s not like one day I was like, “Hey, you know what? Breast cancer would be awesome! We’ll only make it once for the one side, though, ok?” and then I decided to just have both of them taken off for the fun of it.

No. I don’t want this. It’s not a thing that I would choose to do under normal circumstances. But you get breast cancer, you get chemotherapy, and then you get another lump, and, even if it turns out to be scar tissue, it makes you think. It makes you think real hard. It makes you NEVER want to die from breast cancer, and, especially considering the chances of recurrence, makes drastic measures seem quite reasonable.

So sure… maybe I’m wrong… maybe a cure will surface three months from my surgery. Great. That’ll be fantastic. I’ll jump for joy and be happy for everyone that it benefited.

And for me?

Well, at least my boobs won’t ever sag.

Influential Insurance: Killing The Patient

Lately it seems that almost every day I hear about, read about or am told about directly by a breast cancer patient how they beat breast cancer and then, not too long after, it metastasized, which means that it spread to other organs, bones, or the blood or soft tissues. Once this happens it is difficult to control because of its aggressive nature, and the only way to get rid of the cancer is to die. The most frightening part, for me, is that all of these stories are coming from women under 50, most of which are under 40 and a significant portion of which are under 30.

The settings are always random: Monday night’s breast cancer defeat story was told to me on the way out to the parking lot from my brother’s baseball game by a complete stranger. I was walking with my parents and niece when suddenly a woman said, “You have the same haircut as me.” As I turned, she took off her hat, and it was clear from her tired, black rimmed eyes that she was a cancer patient. She told me all about how she’d had it once at 38, gotten rid of it, and then five years later it was in her lungs. She never had insurance and didn’t get scans (because they are REALLY expensive) until she had symptoms, at which point it was too late. Upon departing in the parking lot she said to me, “Good luck. I hope yours doesn’t come back.”

Each time I hear one of these stories I feel a little less certain about the success of my treatments and wonder if I should be doing something different. I have started considering all of these different miracle treatments that everyone and their sister’s mother’s great aunt has told me about and wondering if I should completely change my lifestyle. Blue green algae, zeolite, methylglyoxal, goji juice, all varieties of berries, ph levels, immune power herbal formula tea… I need a serious transformation in everything, apparently. And I think I should live by the ocean.

One of the most unsettling things I’ve read so far, though, is about a girl named Kristy Lasch. She was diagnosed in 2000 at 22 just after she had finished her BA degree at UM. She had surgery, went through chemotherapy, and then went on with her life. Everything was fine.

“After finishing her treatment and reconstructive surgery, Kristy’s hair grew back and she regained her strength. She decided to accept a position at the University of Miami while pursuing her M.B.A. Kristy planned a big celebration for her 25th birthday with her friends. Life was returning to normal. Kristy became active in the Susan G. Komen Foundation and spoke at the ‘Race for the Cure’ in October 2003. She continued to have blood work done every 6 months, as covered by her insurance, and the tests continued to come back negative for cancer. Her insurance didn’t let her get the scans because her blood tests came back negative. Apparently there are a significant percentage of people for whom cancer does not show up in the blood test and would go undetected without a scan.

In May of 2003, Kristy began experiencing pain in her stomach and back. Doctors reassured her that she was fine because her blood work looked normal. The pain came and went throughout the summer of 2003 and by August, she was sure that further tests should be done. Kristy had a scan done. She was diagnosed with cancer in the bones and the liver, and began an aggressive chemotherapy treatment soon after the diagnosis. “

She died on October 3, 2004 at age 26.

I guess the insurance company’s main objective is to make money, and the best way to make money is to insure only healthy people. If people aren’t healthy, it’s a burden to insure them, so it is best to get them off the policy one way or another.

Good job you sick fucks.

The Rebellious Youth

I went to Publix the other day wearing a pink bandanna that one of the oncology nurses gave me. I bought an assortment of foods, including mussels, garlic and white wine. Naturally, I had to prove that I was old enough to purchase alcohol and when the cashier was looking at my ID she said, “I never would have guessed;” assuming that she was referring to my age I said, “Yeah, I almost always got carded before, but since my hair fell out I get carded for everything all the time, even cold medicine.” She laughed and kind of made this sad face at the same time and said, “Well, at least it’ll grow back, right?” to which I replied, “Yeah, my doctor told me it might grow back curly, but that it should go back to normal after a while, although she’s had two patients whose hair never went back.”

The woman standing in line behind me who was in her mid to late 50’s and had previously compared her fatty foods to my significantly healthier foods said, “Mine didn’t grow back curly, and the doctor told me the same thing.” I told her that I was always perfectly happy with my hair and that I would love for it to come back the same and she told me that hers came back a little thicker, but who doesn’t want thicker hair? I agreed, and then she said, “Did your hair actually fall out, or did you just shave it?” I immediately felt like I had to explain myself and told her how my hair had been to the middle of my back and I cut it short to kind of adjust to less hair and then when it started coming out by the handfuls that I buzzed it because it was getting everywhere and that I found it much less traumatic to have tiny bits of hair all over my hands than having endless handfuls of hair coming out. She kind of nodded and then announced how depressing it was to have your hair coming out by the handfuls.

I signed my credit card receipt, the cashier wished me luck in everything, said it was nice to see someone so positive and told me to keep smiling (“you have a beautiful smile,” she said) and I left the store.

While driving home, I suddenly realized that the woman in line behind me was challenging me, actually challenging me to see if my cancer was legitimate, or as serious as hers was, or something… I don’t know.
Why would she do that? Why would anyone do that?

And then I realized it was just like everything else… just like every other damn part of this whole cancer thing… it’s the same reason doctors didn’t treat it like it was serious in the first place, the same reason that the Health Department blew me off, the same reason the biopsy surgeon’s office made me wait two weeks for a consultation, the same reason that woman gave me such a dirty look back in October for saying “at least it’s a good month to get breast cancer,” the same reason I can’t get financial assistance and the same reason that no one can believe that I have breast cancer: I’m too young, and I look even younger. I don’t look old enough to buy Tylenol Cold and Flu, never mind alcohol or to have breast cancer.

But hey, guess what, this just in: Cancer doesn’t care how young I am.

Why does everyone else?

Don’t Forget to Bring a Towel

There is one cool thing about chemotherapy: you get to witness your body being beat down by a foreign substance and then build itself back up again stronger and more durable than before.

However, there is this other, very uncool thing that people savvy to oncology talk call “chemo brain.” Not knowing anyone who has gone through chemotherapy, I was not fully aware of the condition and was not at all prepared for it when I began experiencing it first hand.

These two things occur simultaneously, the effects of each increasing with every treatment so that as the body becomes stronger, so does the “chemo brain.”

As I have mentioned before, and as I am sure you already knew, chemotherapy attacks all cells equally — it does not target cancer cells specifically. The effects of this are especially evident in the nausea and vomiting effect of chemo where the cells of the stomach lining are being maimed. But chemotherapy also attacks that essential organ wrapped up and stored on your shoulders.

I am convinced that I am going to have permanent brain damage.

Here’s a brief summary of the first two months of treatments I just completed:

The first treatment left my body in a poisoned haze of rebellion and discontentment; “why would you do that to me?” it seemed to scream, and tried to teach me a lesson by refusing to walk in straight lines, digest food properly or allow me to complete normal daily activities like washing dishes. I was weak and my body was dizzy all the way up to my next treatment. I could hardly even hold my niece, which made me feel terrible.

The second treatment irritated my stomach more and chased my hair away, and the poison seemed to be storing itself in my tissues for a more malicious attack down the road, but my body seemed to be thinking something to the effect of, “Alright, fine, you wanna see what I’m made of? Bring it on!” I felt better for the two days before my next treatment, which was nice, although it kind of just pissed me off.

The third treatment had me stumbling out of the Cancer and Blood Disease Center like a drunk out of a bar at closing time, and I really thought I was going to lose it on the way home. I wanted to go bury myself somewhere until it was over, but I couldn’t even sleep through it. My equilibrium was dislocated temporarily and I had this tendency to walk into things… things like walls… but my body seemed to be adjusting to the large doses of poison being administered to me bi-weekly and I not only recovered from the treatment pretty quickly, but I felt rather good.
My memory seemed to be affected, though; I couldn’t remember appointments and my word recall was noticeably diminished.

The fourth treatment made me sick at the center, despite my hard core nausea pills (there are three of them in a pack, one for the day of, one for the next day, and one for the second day after treatment and they are sold at a hefty $354/pack). I had to get additional nausea medication, administered intravenously for maximum effect, before they would continue my treatment. For the rest of that day and the next day I could barely stand, never mind walk all the way to the door to let the dog out. I have never felt so helpless and pathetic; I seriously don’t think I would have been able to stand up and wash a dish to save my life.

However, my body is amazing. It was learning how to deal with the chemo extremely well and while I was indeed knocked completely off my feet for two days, I recovered even quicker than I did from my third treatment and I almost feel normal. You probably have no idea how amazing you actually feel right now because the way you feel is normal for you, but please believe me when I tell you that chemotherapy gives you a whole new appreciation for feeling healthy, and when it occurred to me that I ought to go for a brisk walk I almost leaped out of my skin for joy that I felt good enough to want to exercise.

Unfortunately, though, my brain malfunctions have worsened. Not only can I not remember things and recall words from my vocabulary, but my ability to listen and pay attention are at an all time low.

First of all, I cannot remember my short term memory. “Hello Jim. My name is Joey. It’s nice to meet you. What did you say your name was again?” It is really quite annoying, especially for grocery shopping.

What bothers me more, however, is my inability to recall things that I know I know, like words. You know how sometimes you’ll try to think of a word but you temporarily forget it? It’s right there, hiding around a corner that you can almost see around, but you’re at just the wrong angle to get a glimpse? Well “chemo brain” is nothing like that. The word isn’t hiding anywhere – it’s simply not there. It’s not on the tip of your tongue and you have no hope that you’re going to remember the word you wanted to use – all you know is that you used to know a word that conveyed the thing you’re trying to communicate, but you can’t even remember what letter that word used to start with. There are no walls or corners or shadows, there is only a vast expanse of very well lit white where your diverse landscape used to exist, showcasing how thoroughly you’re being cleansed.

While that alone makes me feel stupid when talking to people, my inability to keep a train of thought and to pay attention to what people are saying to me makes me want to avoid social situations all together. I’ll be in the middle of a conversation with someone and they’ll be talking to me and I will just stop registering what they’re saying and zone out, and my internal monologue is going “Hey! Joey! Listen! Pay attention! What are you doing? It’s not that hard, just listen, damnit, LISTEN!” I try to force myself to focus on what the person is saying, and I’m looking at them the whole time but I cannot decipher what words they are using; all my brain registers is a kind of humming buzz. As I start to zone back in it’s like coming up out of a swimming pool and all of those muffled, jumbled sounds become discernible utterances.

By this point, however, I have completely forgotten what we were talking about in the first place, and when the person looks back at me waiting for a response, my only viable course of action is to admit that I have no idea what’s going on.

I Remain Unconvinced

This morning, while I sat on the floor at the coffee table staring blankly out the window thinking about nothing in particular and eating chocolate peanut butter ice cream, it suddenly occurred to me that lots of people die from cancer – all kinds of cancer – and more specifically that lots of women die from breast cancer. Now, while I have always fully comprehended the fact that cancer is a serious, life threatening disease, and while I have been with the constant understanding that I have breast cancer (quiet killer of women), I have never considered my situation serious or life threatening. Rather, I have had the tendency to continuously laugh at myself and make jokes about cancer – which I must say that I do not recommend unless you are at the point that you look like you have cancer, because if you do not yet appear to be afflicted and people hear you making jokes about your condition in public, you’ll get extremely disapproving looks, for morally superior people will automatically categorize you as a cold hearted bitch or unaware jerk.

I’m not sure if it was the peanut butter, the chocolate ice cream, or the combination of the two at 8am, but when I considered the facts this morning, I suddenly became acutely aware of my own mortality. This realization dumbfounded me – how could I, who have always been a relatively healthy individual, have something so aggressively deadly inside me? It had already crept into my lymph nodes and was on the verge of expanding the map, like an internalized version of Rise of Nations — if its first large city hadn’t been so close to the edge, my capital would be in a very precarious position right now. The thing with this game, though, is that it’s me playing against myself; some rogue civilian cell of mine mutinied and started building its own separate, enemy city in my country. Thankfully it built on the outskirts where that kind of thing is more noticeable, not to mention frowned upon.

But who really wants to be killed by some cellular defector? I mean, if I’m going to die prematurely, I would at least like it to be by means of something external to myself; I would rather be mauled to death by a bear than die from some internal flaw. At least a bear is big, powerful, protective of its young and, most importantly, not me. Cancer is so microscopic and non-sentient. The idea of being under siege by something like that is really quite revolting.

Despite these realizations and the thought processes that accompany them, though, I remain skeptical of Bob’s power over me. It’s not that I feel that I can out think him, or even that I’m better than Bob, it’s just that for some reason I don’t believe in him. I’m alive and he’s living in me, which means he’s living off of my energy, and since it’s mine I can do what I want with it, therefore I’ll kill him. The End. I win.

It’s not that simple, straight forward and easy, though, and I didn’t really realize that until this morning. You can’t just say “Screw you, Bob, you’ve overstayed your welcome, get out of here,” and expect it to work. It’s not just there to stay, it’s there to take over.

Considering all of this, my mind is surprisingly similar to the way it was before my startling and all too obvious revelations of the morning, although it is simultaneously completely changed, like when they brought out the colorful new twenty dollar bills; it has the same function, value and overall appearance, but it’s a bit more up to date with finer detail, is more colorful and slightly more playful. But if all of my doctors told me that the survival rate for people in my category was 10%, I would automatically assume that I was in that 10%, and if all of my doctors told me that the invasion was out of control and I could expect to be taken over within a year, I would laugh harder than I did when I found out I had cancer in the first place.

On Getting Buzzed

On Thanksgiving eve of 2007, my hair started falling out.

This is, of course, to be expected, mostly because all of my nurses and doctors have told me that it WILL, without fail, fall out within 2-4 weeks of my first treatment. Mine was within 15 days.

I’ve said all along that when my hair started falling out I would simply shave my head and be fine with it. I was resolved to take it in stride, to brush it off like it was no big deal and not let it bother me. I told everyone that I would be a-ok and that it didn’t matter and that all I really needed to do was prepare myself for the event by cutting my back length hair very short, which I did… twice.

The thing is that it is a very unsettling moment when you run your fingers through your hair and come up with an unusually large quantity of it in your hand; in that moment even the most determined heart suddenly falters, for it is in that moment that all of the inward feelings of sickness are prominently and violently expressed in a physically outward manner that causes the brain to almost shriek, “Oh God, I’m actually as ill as I feel.”

So at first I was a little upset. Within this upset, however, I found new energy which I used to empty the dishwasher, do the dishes in the sink, make corn bread for my stuffing recipe and mess up part of another recipe. As the adrenaline high wore off, though, I resorted to calling my mom.

I couldn’t stop running my fingers through my hair and then looking to see how much I’d collected, though, and so while on the phone with my mom I decided that I ought to put my hair in a glass to help keep it from getting into everything. So for about an hour I sat on the phone with various people while running my fingers through my hair and placing all of the loose strands in a cup. Now, while there is something absolutely mesmerizing about effortlessly taking the hair from your head and placing it in a cup before you, it is equally disconcerting and has the ill effect of causing a resolute mind to crumble just long enough for the affected soul to release her frustration in the form of unwanted and demanding tears.

It is in this confusion of weakened resolve, frustration and strangeness that I found myself desperately wanting a razor to rid myself of the increasing burden of my hair. Unfortunately no one had a functioning electric razor in their possession at that time, and it was late and I was tired and at least 20 minutes from the nearest 24 hour Wal-Mart; thankfully, however, I have been incredibly fortunate to find myself in the company of amazing family and friends, and my mother and father drove to Wal-Mart at 10:30pm, bought me an electric razor, and then drove 20 minutes each way to leave it in my unlocked car so that I might use it in the morning.

The next morning Bryan and I stepped outside and unceremoniously shaved my head.

And so it came to be that on Thanksgiving 2007, I sported my new buzz cut with bald patches at two family dinners, was thankful for my friends and family in a whole new way and minimized the amount of hair in my stuffing.

Conflict of Interests

I had never wondered what it would feel like to receive chemotherapy until I found out that it was entirely likely I was going to be required to experience it first hand. Once I discovered that I would indeed be finding out exactly what it was like, I timidly pondered the various possibilities in the recesses of my curiosity, but generally avoided thinking about it. There was only so much timidity my mind would put up with, though, and the three days prior to my first chemo treatment was a grotesque orgy of nervous speculation. But it was cathartic, and on Tuesday the 6th of November I swept into the Cancer and Blood Disease Center like a cool breeze and went through the motions like there was nothing curious about it.

And nothing new, different or odd occurred on that morning/afternoon, I know – it’s been going on for years, infiltrating millions of people’s lives and improving with the evolution of science and medicine – but it was all new and different and previously nerve wracking to me.
When the time came for it to infiltrate my little world, though, I was as prepared as I could be and grinned, bared it and took it like a champ; a champ that stayed in bed for most of the rest of the day afterwards, but a champ nonetheless.

It was a slightly strange thing to experience because every evolutionary instinct that has kept our species in existence was kicking and screaming at me to get away from that stuff immediately. Of course this reaction didn’t happen right away because they don’t start administering the chemo until about an hour into the process, but as soon as those toxic substances began eroding my veins and waging war against my entire cellular being, my life energies demanded that I rip the iv out directly and find means to a blood transfusion forthwith.

Here’s what happens:

First they do blood work, because they always do blood work. The vein in my left arm is getting really pissed off about all the stabbing and sucking that is being done to it on at least a bi-weekly basis (they can’t take blood from the right arm because that’s the side I had lymph nodes removed from)and it has recently started to refuse closing up after blood is drawn, figuring it might as well just stay open permanently.

After they do the blood work and decide whether or not you’re well enough to get chemo, they send you in the back where all of the treatments take place. It’s basically one very large room separated into a couple of different areas by tall book cases and dividers that section off a nurse’s station, a couple of patient areas and a little family waiting area.
You walk down a long, meandering hallway from the waiting area and through an archway; ten feet back is the nurse’s desk. Beyond the nurse’s desk are tables, book shelves, filing cabinets, storage closets, and mixing areas; basically the typical kind of nurse’s station you’ll find in any medical facility, except this one has a very high concentration of highly toxic chemicals meant to be injected into people. All along the walls behind you to your right and left are these old blue recliners with a plastic type material covering them, and next to every recliner is a metal bag hanger on wheels that they hang the saline, steroids and chemo from. On the far right hand side is the family waiting area, and just beyond that is the main treatment area with new, cloth covered recliners and metal bag hangers, some TV’s and magazine racks.

Anyway, so you go back there and hand them your paper work and they sit you down, ask you a bunch of questions and stab you with an iv. In my case, I have a port, which is really good because that will help to preserve my veins in the wake of the toxic chemicals that are supposedly going to cure me, and when they put the iv in my port, they call it “tapping the port,” what they do is they have this fat needle with this thimble like top with wings that they insert with a harsh stabbing motion. Now when I say stab, I mean they push that thing in hard, and I am pretty certain that the nurse that “tapped my port” the first time has never had a port or known anyone who has had a port, because when I asked if it hurt, she said that it would be a pinch because it was going through skin, but that wasn’t a pinch, that was a stabbing pain, and it burned… oh did it burn.. it was like the needle was coated in acid, lemon juice and salt all at the same time, and it hurts when the port gets pushed on anyway, and they pushed hard!

After they “tap the port” they drip the premeds – saline and steroids – through the iv. That takes about an hour.

Next is the Adriamycin (Doxorubicin), which is red and comes in two very large syringes. It is slow pushed in by a nurse over the course of about 20 minutes while saline is simultaniously dripped in from a bag. They have to do it slow and dilute it because it’s very irritating on the veins.

Then they hook up the Cytoxan. It slow drips from a bag for a little over an hour, again with the slowness because it’s harsh on the veins.

The last thing they do is flush it all in with more saline, and then use a syringe to inject some blood thinner so the port doesn’t clog up, then more saline to flush that in.

By the time I left I was exhausted and within two hours of being home I crawled into bed and stayed there for the rest of the day and night. There is no way to describe what my body was experiencing other than to say that it felt like I’d had poison slow dripped into my veins over the course of a couple of hours. It was a kind of masochistic slow torture that went against my every instinct.

Things for Reasons

It would seem to me that the very nature of retrospect is, in all of its profundity, to be a bitch. I mean I suppose if I were to go back in life I wouldn’t change anything, fearing the upset of my own nature, but I must admit that I would be tempted.

Take, for instance, that time with the Tic-Tac when I was nine and my little sister was five and a half: We both loved Tic-Tacs, especially orange Tic-Tacs, and every now and then my mother would give in to our pleas in the check out lane at the grocery store and buy us a container of orange Tic-Tacs. Well that night Carrie went to mom to ask for a Tic-Tac for each of us. A few minutes later she comes back and hands me this teeny tiny little piece of the Tic-Tac. The piece is so small that if it were accidentally consumed it would trigger your senses to crave an orange Tic-Tac, although you wouldn’t realize that you had in fact just the moment before swallowed a fragment of one. Anyway, so she hands me this thing, and I take the little shard from her, sneer at the fleck on my finger, stomp angrily over to the trash can and make an exaggerated point of lifting the lid off, throwing the fleck into the trash and thrusting the lid back on while exclaiming, “What am I supposed to do with that, cough on it?” Carrie looks disappointed and uncertain of how to react. My mother, sitting at the kitchen table through the whole episode, looks up from whatever it was that she was doing and demands that I “come here right now.” So I do, still angry, and she explains the situation to me. Apparently there was only one Tic-Tac left in the container, and Carrie, in all of her caring and thoughtfulness went to my mom and asked her to cut the Tic-Tac in half, to which my mother said no because it was too small and that she could just go ahead and eat it. Well this did not bode well with my sweet little sister, so she took the liberty of biting it in half to the best of her ability, to which I responded in the most ungrateful manner I had ever or have since responded to any situation. I immediately wanted the chance to do it over again, to take back my insult. How could I have possibly treated her with such utter callousness and disrespect when she was treating me with such warmth and sincerity?

The guilt I felt when my mother told me what my sister had done burned the scene so deeply into my memory that I still feel bad about it to this day. As a matter of fact, I feel the need to call her right now and tell her what a wonderful sister she is and how grateful I am to have her in my life.
Carrie doesn’t remember; I, on the other hand, have never been able to forget it or forgive myself for behaving so poorly. But it was one of those pivotal moments in childhood that forms how you are as an adult, and to change how the scene played out would have ultimately changed my outcome as an individual, and I’m pretty sure I’m an ok kind of person at this point.

So yeah, retrospect. It’s made me wonder, “What if?” at least seven hundred sixty thousand fifty nine point five times. At least. But then, on the same token, I always wonder how I would be now if things hadn’t played out like they did, and I find myself feeling incredibly happy about life in general.

But this feels somehow different, and I find myself wondering “What if?” and wishing I could go back and change my course of action. I know that in essence it’s exactly the same as anything else that anyone would ask “What if?” about – it’s the same as the incident with the Tic-Tacs, the same as that time Mike and I moved to Austin and the same as that night Rachel and I were hiding from on the roof at Medima’s and the Blue Heron flew over our heads – but, regardless of it’s underlying similarity, it still feels different.

I often wonder how much sooner I would have caught it if I’d done regular checks. Would I have found it before it was invasive? What about if I’d gone ahead and gotten a scan while I was still in England? Would that have made me take action sooner when I got back to the US? Or would the English doctors have treated it as equally unimportant as the Health Department doctors? What about if I’d listened to my own damn instinct and demanded that someone help me out? Why did I tell myself to shut up and stop being silly? And why didn’t they give me the ultrasound report in the first place? That would have caught my attention and made me run to a surgeon for a biopsy. But they didn’t, and instead I took my sweet time, because why should I have been worried when they seemed so unconcerned about it?

I could “What if?” all night. I won’t, though, because that kind of speculation is frivolous now, isn’t it?

I suppose I could stomp, yell, complain, cry and be angry, too, although I think that’s hardly useful for anything, not to mention I don’t feel like it. But I’m fine – really I am. And that’s what I tell people, although they don’t seem to entirely believe me.

I’m ok, though, I think. At least for now.

But what about when I start pulling chunks of my own hair out? What about when I feel sick to my stomach for no apparent reason? What about when I just can’t do it because I’m too tired? What about when those wonderfully familiar tastes and smells turn foreign and putrid? Then what will I say when they ask, “How are you feeling?” How will I be then?

What is this going to make of me?