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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.
Written this morning (Wednesday, April 16) directly after my visit with Dr. Paul Smith, the artist and plastic surgeon I discussed the option of a mastectomy with at Moffitt. This is going to constitute the ending of my research project for my Social Constructions of Reality class. The title of this post was stolen directly from a Nine Inch Nails song off of the mixed CD given to me by Ryan before I started treatment. Please stop reading right here if you want to maintain the misconception that I’m not a wimp. Also, I blame Ryan for killing my car battery.
My vision begins to blur as I exit through Moffitt’s rotating doors, the doors that inhale and exhale cancer patients at an alarming rate. I glance briefly at some of the patients as I pass them, their various cancers wreaking various levels of havoc on their hosts, and wonder how they are suffering. A tall, skinny woman wearing sweatpants, a hoody and a surgical mask walks with difficulty toward the rotating doors. She looks young and does not meet my eyes, concentrating solely on the task at hand – walking, as I have mentioned, can become a shockingly difficult undertaking for the chemo patient. I look at the man assisting her and offer a weak smile, hoping that he can tell by my hair, my lack of eyelashes and my eyes that I sincerely hope things work out alright for the two of them. I wonder, turning back to watch as they are inhaled, if he can fathom what she’s going through, if he is able to give her everything she needs, and if not, if she has someone that can. I wonder what kind of cancer she has and if she is going to beat it or if it is already consuming her – she looks partially consumed, but perhaps it is simply her treatment.
I stand in the sun, waiting. I realize that I have a stranglehold on my travel thermos, both hands gripping the half full container as though it were the only thing keeping me buoyant. The two books I brought with me, The Social Construction of Reality and At the Will of the Body, are pressed tightly between my arm and my side. I direct my gaze toward the parking garage as a small blue car exits, and as it nears I realize that it is my car; the driver seems to recognize this too and returns my smile. He holds the door and closes it for me when I get in, I thank him and wonder if I should fumble for money or not, but he is off before I make much more of this thought and I hurry to get out of the way of the other cars.
I breathe in deep as I press down on the clutch and shift into first, exhaling as I switch to second. The transition is smooth, but my breath is shaking. “Mom wants me to call her,” I think as I stop and try to work my way around the parked cars to the traffic light. “Not yet,” I answer myself. Jaw clenched, I signal right at the light and stop to check if anyone is coming from the left. I realize that the light is green and a single tear escapes from my eye and slides slowly down my face. My grip on the steering wheel is almost as tight as it had been on my thermos, although it is less obviously a sign of anxious distress. I suddenly have the desperate urge to call Ben, but international calls are too expensive, and Avon is a poor source of income. I wonder who else I could call that would give me the same kind of relief and distraction, but there is no one.
I hold my breath and swallow hard, but it is of little use and salty tears leak down both sides of my face. ”Why am I upset?” I wonder to myself, “Why did he have to say ‘cancer bags?’ I don’t think that.’” I know that this is not my source of distress, though, and try to think about school. There is a lot to finish within the next seven days, but not enough to distract me from my thoughts. “Am I shallow? Is it really so important to have ‘normal’ breasts? Is it vain to worry about the resulting scars on my back? I don’t want scars on my back.” My mind begins to go faster as the numbness wears off, and as I turn onto Alumni Drive I begin to question the validity of my concerns, my selfishness, my body image, my god damn gender expectations and my fucking sexuality! “I’m angry. Why am I angry?” I ask myself as hot tears course freely down my cheeks and drip rapidly off my chin. I think back and try to remember if I was ever angry about cancer from diagnosis through chemo. I can’t remember a time when I was, and I wonder if now is an appropriate time to start having these feelings. After all, it’s just cosmetics, right? Isn’t being alive what counts? Isn’t that my prize?
I imagine myself in class trying to explain this part of my experience, trying to explain what I’m facing; “It’s a question of either not having to worry every single time something changes in my breast, not having to worry about a recurrence of cancer, and not having to go through 35 radiation treatments, or of having two ‘normal,’ soft, functioning breasts that I can feel and that are mine,” I explain to myself in the classroom. “It sounds simple,” I tell the faceless bodies in front of me, “but it’s not. It’s really not,” and, even in my mind, in front of the entire class, I break down crying. I consider screaming, wondering if this would help, but decide that the USF campus is probably not the appropriate place to take such action, even if I am driving with my windows rolled up.
My face is tight with salt residue by the time I pull into the parking lot off of Sago Drive. I go directly to the aisle closest to the library and find a parking spot right away, all the way at the end of the row. My shoulders start shaking again as I pull into the spot. Directly facing me is a parked car with two women in it. I wonder if they are watching me and I consider putting my sun shades in the windshield, but decide that the privacy of relative enclosure would only cause me to break down more completely. What I need right now is to write, to explain to myself what I am feeling about the prospect of having my breast removed and replaced with an implant, with something alien that I cannot feel.
I wipe the residual wetness from my eyes, take a deep breath, pause, and pull my computer out of its carrying case. I already know that I will title whatever I write after the song that is playing on my car stereo, and as I write, raw emotion articulated through my fingertips, I play the song over and over, listening to it countless times until finally my car stereo stops, flickers, fast-forwards, rewinds and dies. I realize that I have exhausted my battery and turn off the car. I feel silly, dumb and careless – what idiot sits in their car listening to the radio without turning it on to avoid killing the battery? I smile slightly as I breathe a sigh of relief; “This is normal,” I think to myself and sit unmoving for several minutes. I pull my seat forward and try to turn over the engine, but with no luck. I shake my head at myself and think, “I feel normal,” then pick up the phone to call my mom before I make that slightly embarrassing, slightly exhilarating call to AAA.

I have much to say, although very little time to say it. After this week I will be finished with this semester and will spill all the things I have been dying to write about onto paper at last, least I should forget. After all, I did not invest all of this time, money and distress to simply continue on with life without documenting my experiences and pretending everything is the same as it was before, now did I?
As for my most recent updates, I’m going to see the plastic surgeon at Moffitt tomorrow morning, Wednesday, at 8:00 am. Discussing the removal of my breasts should be a fun way to start the day! Perhaps in my attempt to avoid thinking about it I will be more productive with my research papers. : )
In other news, my eyelashes are still punishing me by remaining in hiding and subjecting my eyeballs to the constant irritation of dust, dirt, wind, smoke, dead skin, insects, small children and anything else that you could possibly think of that might have the slightest potential of making its way into your eyes at any point and time. Eyelashes, I have learned, do WAY more than I initially gave them credit for. I miss them.
Scar tissue!
These past two weeks have been vividly reminiscent of the two weeks following my initial breast cancer diagnosis, except that this time I already know the motions, the procedures, the vocabulary and the doctors. It is more in the form of negotiation where I am asked what’s good for me instead of being told, talked to instead of at, and I already have a relationship with the nurses, doctors and even some of the imagining technicians. I know how to get there, where to go, what they call it (for example, the Medical Office Building is actually the MOB), the best place to park, what I need to bring, and how long I’m going to have to wait.
This time, just like last time, all of the driving, calling, meeting, discussing, scanning, picking up and waiting, waiting, waiting is taking up all my time; but this time, it is also taking up all my energy. This time the mystery, strangeness and gargantuan amount of new information has been replaced by repetition, familiarity and crystal clear understanding. The adrenalin stopped pumping a long time ago; now I’m just kind of stressed and my left eye won’t stop twitching.
Today, however, provided something new, different, interesting and quite strange. Today I got a spur of the moment operation where I not only got to stay awake and see the rather large hole cut into my breast (although I did not get to watch the procedure), but also got to handle the tissue removed and squeeze the lump literally between my fingers, outside of my breast!
When I went in to Dr. Duponts office in Lakeland, I thought Dr. Dupont was going to examine me, look at the ultrasound and mammogram films, talk to me about options for the next step and then schedule me for something either this week or next week. And she did examine me, look at the films and present options, but she also stated her discomfort with the lump and told me that she had pulled a tech from the medical procedure building across the street that could preform an ultrasound guided needle core biopsy on me today if I wanted. She told me that the lump felt dissimilar to the rest of the scar tissue in the area and that it shared characteristics of the original tumor. She said that for those reasons she believed that the biopsy would show that it was a cancerous tumor and that in that case she could recommend an excellent plastic surgeon named Paul that could preform a mastectomy with reconstruction. He is, she said, literally an artist, a sculptor, “He’s got the eye; he does beautiful work. The best. The best.”
Unfortunately, however the surgery would not be preformed for another three weeks. She said that she likes to wait for at least a month after chemotherapy is over to preform such a major surgery. This made me feel antsy. I hated the idea of leaving that thing in there for another three weeks if it proved to be more cancer. Dr. Dupont, the wonderfully perceptive woman that she is, could clearly see that I did not like the idea of waiting, and since she is as warm, caring and empathetic as she is perceptive, she understood completely.
I went into the procedure room so that Karen, the technician that Dr. Dupont brought over from across the street, could begin by trying to get a clear picture via ultrasound. Meanwhile, Dr. Dupont went out into the waiting room to let my mom know that we were going to do an ultrasound guided needle core biopsy. While she was telling my mom everything that she had told me, she told my mom that I clearly did not like the idea of having to wait a couple of weeks for a mastectomy if the biopsy came back positive for cancer, which, she told my mom, she felt it would. My mom said something about how I wished there was some way I could just “pop it out,” and Dr. Dupont, my mom told me later, kind of lit up and said, “Oh, that’s what I’ll do! I’ll be back in a few minutes.” She then came into the procedure room while Karen was ultrasounding my breast and asked if I just wanted it taken out right then and there. “Uh… Yes,” I said, uncertain of exactly what that would entail, but knowing that I didn’t want the thing in there. “Ok,” replied Dr. Dupont, “We’ll get it out of there then. Donna,” she said to her head nurse, “please prepare a cart,” then she turned to me and said, “I’m going to go let your mom know what we’ve decided to do.”
Ten minutes later Dr. Dupont came back in the room decked out in her surgery garb, just like she had been for my lumpectomy at Moffit, and explained that she was going to use local anesthesia and avoid getting blood on my pants, which she was glad weren’t white.
The anesthesia injections were rather uncomfortable… somewhat painful, actually… and she had to apply a lot of them because I have dense breast tissue, but it was probably much less painful to get the injections than it would have been to have the lump cut out without any anesthesia, so I didn’t mind. When she started sticking the needle into the many necessary areas she said, “Now this is going to hurt a bit, and that’s allowed, but if at any point after this you feel anything at all, you let me know because that’s not allowed and we’ll put an abrupt stop to that. We don’t want that. Discomfort during the procedure is strictly prohibited.”
The procedure itself was very strange. When she first started cutting into me I could kind of feel it, so she gave me more injections. Then a while later, while she was snip, snip, snipping away at the area around the lump I could feel a cutting pressure again (she went pretty deep) and I got even MORE injections. She ended up injecting four bottles of local anesthetic between the beginning and end of the procedure, at which point she injected a bottle of stronger stuff to tide me over until I got home. She also rinsed the cavity with an entire bottle of anesthetic at the end before she sewed me up. Mind you, these were NOT small bottles.
The first really weird thing was when she would make a cut with the scalpel or a snip with the scissors and I could feel the warm blood flowing down my side, and then when she would pull at something and I could feel blood oozing out, overflowing and spilling into the sterile area around me. It felt like a lot, although she had said before she started that she didn’t think there would be any crisis of blood loss and she never seemed particularly upset about the amount of blood, so I guess it wasn’t too much.
It was very strange to feel her pulling the whole time; first cutting through my skin and pulling it to the sides; then cutting through my tissues and pulling more and more to each side with each little “snip” of her little scissors; then, when she finally cut out the entire chunk that she wanted, I could feel the hole being pushed open with the little tongs to allow for a better view of the inside. I could feel her fingers inside the cavity, searching for any other abnormalities. I could feel it when she was stuffing the gauze in there to sop up the blood and then when she pulled out the drenched wads when she was ready to continue working. I could feel when she was pressing the cauterizer into me, into my tissues, trying to stop the bleeding while literally singeing me to well done on the inside… it is a very strange thing indeed to smell yourself cooking.
But it only hurt in the very beginning, before all of the cutting, pulling, burning and stitching, when she stuck the needle in me. And now. It hurts now. I’ve taken pain pills but it still hurts, probably partially because of the existent nerve damage; things tend to hurt my right side/breast/arm more than on the left side because the nerves are all still funky from surgery back in October. Also, she was cutting, pulling, burning, internally probing and stitching my boob, so that probably has something to do with it.
It was also quite strange to handle my own breast tissue. After she finished cutting and before she stated cauterizing she showed me the chunk she took out, which was surprisingly large, marked it for the lab and then, after Donna put a glove on my left hand, handed it to me. It was very cold, which surprised me, and mostly devoid of blood. After a little bit of massaging it between my fingers I could clearly feel where the lump was, which was a very, very small part of the chunk; at least we know she got good margins.
While she was probing around in my breast, after we had put the chunk of tissue into a cup with some type of liquid in it to be sent off to the lab, she said to Karen and Donna, “Huh, it looks like there’s a little blue dome cyst in there. Do you see that? I think it’s a blue dome cyst.” I suddenly envisioned the inside of my breast as a kind of aquatic cave full of beautiful, fascinating sea creatures. “I have a cyst?” I asked. “Yup. That’s what it looks like” she said, and I pictured some kind of bright, flowing sea anemone dwelling in the newly created cavity.
I couldn’t help it, and before she was finished I asked if I could see. She said yes and Donna got a mirror. Dr. Dupont had been cauterizing for a few minutes at this point and, while I was looking in the mirror, she said, “As you can see, that’s the pool of blood I’m trying to get under control. This over here,” she circled with her finger, “is normal fibroid breast tissue, and this,” she pointed, “is the cyst. You probably can’t really appreciate it right now, but it’s there.” “Yeah,” I answered, “at this point it just kind of looks like part of the landscape.” It was, after all, the first time I’d ever seen the inside of a breast. It wasn’t exactly an aquatic wonderland, but it did have some of the qualities of a cave; there were the nooks and crannies, the rocks and ledges and, of course, the pool of water… well, blood, if you want to be technical about it, but it could have just been the reflection of the cave’s red rock walls making the water look like blood.
During the entire procedure Karen, Donna and Dr. Dupont all kept me and one another engaged in conversation. I wondered a few times if that’s what it is like during surgery when the patient is under, if they talk about their pets and remodeling their kitchens and what not. Karen asked me at one point if I was still doing ok. I said yes, and she told me that she has found, as a person who had undergone a lot of serious dental work without any kind of anesthesia due to severe allergic reactions, that with pain it really does come down to mind over matter and that if you can distract yourself from what is really going on it won’t bother you as much. To be honest, though, I liked knowing what was going on and probably wouldn’t have minded watching.
Dr. Dupont felt that the area of the lump looked very much like scar tissue, and she said that she was hopeful that that’s what it would turn out to be. She told me that while the cosmetic result is going to be a little less pleasing than it was before, it is better to have the lump out of there, even if it is just scar tissue. I agreed and told her that, at this point, I prefer a type 2 error any day.
The chunk will be sent off to the lab Thursday (tomorrow) and we should have the results by Monday or Tuesday. I feel that Dr. Dupont is extremely knowledgeable and very perceptive, so I share in her hopefulness, but I am also not giving myself over to hope entirely because I don’t want to risk feeling cheated and extremely disappointed.
In any case, here’s to hoping.
