Long Time No Post

Well, it’s been a really, really long time since I posted. I blame this on my tendency to be a poor communicator (good thing I’m in the department of communication for grad school!).

Anyway, I don’t know if anyone even bothers to read this anymore, but I do know that this is a fantastic personal reference to help me remember things that might have otherwise been completely forgotten due to both my tissues and my memory being burned by chemical cocktails.

I have been doing work at USF on illness: I have talked about the social construction of illness, performance theory and illness, illness narrative as a means of patient empowerment with medical care providers as well as personal empowerment with their illness, and I am currently working on a piece about how illness narrative might help change the landscape of private health insurance. Eventually I hope to take all of these bits and pieces and turn them into one, cohesive work.

In my various academic ventures, it has been very helpful to be able to reference back now and again and remember how the sensation of touch was so noticeably altered after my first chemo treatment (whilst making salsa), and how bad my skin hurt for unknown reasons, and how bad my bones hurt after shots, and how difficult it was to engage in normal social behavior (chemo brain), and how having super short spiky hair made me feel stigmatized in public.

Thus, I shall make an effort to continue writing, if for no other reason than to maintain the memory of why I became so interested in health communication in the first place.

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.

No Party After All

Everything went well, I somehow woke up with “breasts” almost the same size as the originals, and once they’re finished with reconstruction, I’m going to have a fantastic rack.

Right now, though, it hurts to type much and I’m too fuzzy headed to think coherently anyway, so details will have to wait. Until then, the Nintendo DS and Playstation are keeping me company.

Bring It On

Now I lay me down to sleep

May what I’ve sown good karma reap,

But if instead I up and die

Throw a party that lasts all night.

Invite everyone I know to my kick-ass wake,

And in my honor ass-hyphen jokes make.

Hire a band that will charge no bill

And take donations for those less fortunate still.

May life bless those I’ve loved,

And who have loved me well,

And may the jerks and users all go to hell.

On Saturday July 26th, 2008 at approximately 4:00pm, Mary died.

Dear Mary,

There were still things to say, hugs to give, laughs to share and at least one more “I love you,” but, as it turns out, tomorrow never came, and now it’s too late.

I have a lot of thoughts running through my mind that begin with “I wish I had,” and I regret that I didn’t, but we know that you knew we all love you, so I’ll let it go.

We miss you.

With Love,

Joey

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.

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.

Bacon

On Friday, May 2nd at approximately 3:00 in the afternoon, I sat in the cancer center typing merrily away to Paul on my computer while upwards of $6000 worth of Herceptin dripped slowly into my body. The usual suspects were about: the nurses doing their nurse thing, the friendly older man with the terrible cough that always seems incredibly busy while he’s getting his chemo, the frail old man that always smiles at me but has never spoken to me, the old man with the walker and the oxygen that always talks to me but I can barely understand what he’s saying, the old Spanish looking woman who I’m almost certain never understands a thing the nurses say to her, and Mr. Bacon.

Mr. Bacon is probably in his 50’s. He’s trim and fit with silvery white hair, a sparkle in his eyes and a smile that could make even the meanest sour pusses smile. He’s the kind of guy that you can’t help but enjoy being around; the kind of guy that makes going for chemo entertaining. He is very witty, genuine and has a wonderful sense of humor that he uses to engage in playful banter with the nurses and make people laugh. He’s the kind of person that you want to be like when you’re his age and hope that your kids will turn out like. All in all, he’s a pretty cool guy.

Everything was going as it usually goes — nothing surprising or out of the ordinary had happened or seemed pending, which is favorable when you’re getting cancer treatment — but lurking under the merry facade of Mr. Bacon’s cool, calm and collected demeanor was an unhappy truth waiting to be uncovered.

When the nurses unhooked Mr. Bacon from his IVs, he got up as usual and joked as he walked across the room. But, I realized, he wasn’t leaving yet. He was going in to see his doctor, and was going to come back to the chemo room before he left. I didn’t think much of this deviation of routine and continued typing away on my computer, although it should have been my first clue for what that terrible May day had in store.

Ten or fifteen minutes later I was made aware of Mr. Bacon’s return by the nurses’ eager questioning of, “How did it go?” from across the room. My chair was in a position that put Mr. Bacon back and left of me, so I couldn’t see him without turning around, but when I saw the one nurse’s face drop, it was all I could do to stay in my chair. When I turned around, Mr. Bacon was just shaking his head, not saying a word, and four of the nurses were gravitating toward him. The one nurse said in disbelief, quite loudly, “No! You’re kidding!” I still didn’t know what was going on, what had happened, just that it couldn’t be good. Finally, Mr. Bacon said, “Nope. Not kidding.” By this point the nurses were close to him and they were speaking quietly so that it was difficult for me to hear what they were saying, but then, clear as day I heard Mr. Bacon say, “I won’t see Christmas. I won’t see Christmas,” and it was all I could do not to cry.

He was upset, of course, and I could hear it in his voice, but he spoke matter of factly and remained as calm and collected as ever.

And then he laughed.

From that point on his regular tone returned and he joked and laughed almost like normal, except this time it was about how he was going to die and that there was nothing he could do about it. He wouldn’t be coming back for treatments anymore, since they obviously weren’t working and he had better things to be spending his time doing. I heard him say, “He said I could try radiation, but, I mean….”

I wanted so badly to jump up and give him a hug, but my inhibitions were too great and by the time I plucked up the courage to do it I would have had to have picked up my chemo pole and chaseed him down the hall and into the waiting room out front. Then, as soon as it was too late, I deeply regretted not getting my ass up, interrupting their conversation and giving the man a hug.

After he was gone I asked the nurse what happened. She told me that Mr. Bacon had complained about headaches in his prechemo check up that morning and the Dr. sent him over for a PET/CT scan of the head immediately (they have their own PET/CT unit in the building next door). The radiologist brought the results to Mr. Bacon’s Dr. right away (it usually takes a couple of days), and after chemo Mr. Bacon went to talk to him about it.

As it turns out, Mr. Bacon’s cancer spread to his brain, and once it’s in there, it is near impossible to get rid of. Obviously that meant that his chemotherapy was ineffective, leaving him only with the option of radiation. The effectiveness of that treatment at the stage his cancer was at would be incredibly limited, but the effects of radiation of the brain on Mr. Bacon would have been horrible, most likely leaving him very sick and partially bed ridden for the remainder of his life.

Mr. Bacon didn’t want that.

I asked the nurses if I brought them a card for Mr. Bacon if they would address it for me and send it to him (they clearly wouldn’t have been able to give me his address). They said yes, so that night when I went to the Relay for Life at Lecanto High School, I dedicated a luminaria to Mr. Bacon in his honor and took a picture of it and the word “HOPE” spelled out in the glowing bags on the bleachers. I made him a card with these pictures and a picture of the group of us that went that night on it and sent it to him. I hope he liked it.

Every time that I have talked to some new person about cancer since May 2nd, and that person tells me that I’ll surely beat it because I have “the right attitude,” I want to tell them all about Mr. Bacon and how he has “the right attitude” and isn’t supposed to die from cancer — that he is proof that cancer does not care about its host’s attitude towards it. But I have only done this twice, because it seems that telling people a story like that when they’re trying to be hopeful and inspirational breaks something inside them, and there are only so many times that I can bear being the reason for that terrible, desperate look in someone else’s eyes.

But everyone I speak to on a regular basis knows about Mr. Bacon, and now so do you.