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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.
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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.
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.
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.
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.
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.
When my mom was a child she used to go to the soda shop down the street from her house and order vanilla soda; she loved vanilla soda. She tells me that it both soothed her stomach with its light, bubbly sweetness as well as her senses with its warm, comforting scent. Recently she has been scouring store shelves in various grocery stores hoping to find her childhood love in a canned, processed form, but to no avail. She changed her tactics to searching for a vanilla flavored syrup like the ones they use at Starbucks, but, again, with no luck. So one day when she asked me if I had any idea where she could find some, I recommended that she make it herself and then explained how she might do this.
Unfortunately that didn’t work out so well for her, so when I went over to her house this morning I decided to try to make some before I left for school. Now, mind you, I had never done this before, but it seemed to be turning out alright, so I went for the club soda to give it a try. The bottle of club soda I picked up was a sealed bottle, and when I broke the seal it became apparent that it was a sealed bottle that had been shaken or dropped, because it sprayed everywhere in the one second that it was barely open. My mom and I were dripping with club soda, which my niece found hilarious, and as my mom threw me two towels, one for myself and one to mop up the floor, the phone rang.
My mom picked the cordless phone up off the table, groaned, hit the “talk” button and handed it to me as I looked up.
“Hello?” I said uncertainly, only guessing who the entity on the other end of the phone was.
“Hi, is Joanna there?” came a familiar female voice.
“This is Joanna.”
“Hey Joanna, it’s Angie from the cancer center,” she told me almost apologetically.
I breathed in deep and turned away from my mom, “Hey Angie.”
“Dr. Chirayath wants to talk to you about your ultrasound and mammogram results,” she told me. I closed my eyes and braced myself, knowing what it meant. “I don’t know what your schedule is like today,” she continued, “but you could come in at 3:30, or if today isn’t good for you you could come in at 1:30 tomorrow or a little later at 2:45.”
“No,” I say, shaking my head even though I know she can’t see me, “I’d rather come in today.”
“I thought you probably would,” she answered with something like sorrow in her voice. “See you at 3:30.”
“Ok, 3:30,” I said and hung up the phone.
I turned around and immediately started explaining to my mom how I needed to call Bryan to ask him to get my professor’s cell phone number out of my notebook so I could call him to let him know that I wouldn’t be able to make it to class, and as I was stumbling over my words and fumbling with the phone, making some haphazard attempt to put it in an occupied space on the table, she grabbed me and pulled me into her, hugging me, and I went completely silent. We just stood there like that for a minute until Emma, who was sitting in her highchair eating and could clearly sense the sudden change in emotional atmosphere, made a very loud noise, breaking the silence. We both released and turned to see her staring at us with her beautiful blue eyes wide open and a look of concern and bewilderment on her face.
I went outside with a pencil and a piece of paper I took out of the garbage. My fingers clumsily scrolled to Bryan’s number and hit the “talk” button. There was a lot of noise in the background when he answered, indicating to me that he was nowhere near my notebook. I told him what I needed and he said he’d call me back with it in a few minutes. I sat in the sun on the front porch with the towel my mom had thrown to me slung over my shoulder, waiting. I felt myself shake inside and I closed my eyes and breathed in deep to keep myself together; behind me I heard the door open. “You have to smile now,” I thought, and wiped the corners of my eyes. Mom sat down next to me and Emma leaned toward me with her arms open wide, seeming to sense that I needed a hug and knowing that she could make me smile.
I called my professor but he didn’t answer, so I sent him a somewhat long and rambling e-mail starting with what I have been doing concerning my research project for class and then detailing the events in my life over the past two and a half weeks. He called me about 20 minutes after I sent it and told me that it was quite possibly the most amazing e-mail he has ever received. He said that I shouldn’t worry about missing class, that he couldn’t imagine me making any other choice, and that I also shouldn’t fret over my project. He ended the conversation by telling me that I’m a wonderful student and that he is very happy to know me. It made me smile.
Later on my mom, sister and I sat in the Cancer and Blood Disease Center talking to Dr. Chirayath. She said that the ultrasound report said that the lump is definitely solid, thus not a cyst, and that the margins are irregular, which is bad. The mammogram report said that the lump is definitely solid, but with no detected irregularities, which is good. Unfortunately, the two reports are conflicting on the irregularity standpoint, and even less fortunately, the ultrasound got very good pictures. Dr. Chirayath suggested that I do one of the following: 1) I could get an ultrasound guided core needle biopsy at the center, because while the lump is small, the ultrasound got “very clear, very good pictures” and would allow for a good sample or 2) I could have it removed by the surgeon that did my lumpectomy, Dr. DuPont, and then analyzed.
I have an appointment with Dr. DuPont at 4:15 tomorrow afternoon.
“She is hurting me,” the breast said of the mammogram technician squishing it between clear plastic plates, trying to get a good picture of the pea sized lump positioned inconveniently close to the rib cage.
“I know, I know,” soothed the supportive brain, “but we need some good pictures. You can tough it out, I know you can!”
“Yes, I know that too,” replied the breast in its eerily soft, calm, plural voice, “She is just taking so many pictures, and it was already hurting from the the fingertips poking it so much.”
“Yeah, I know, I’m sorry,” the brain apologized, “It’s not always easy to control those fingertips, though.”
“We didn’t mean to cause you discomfort,” the fingertips said, “It is just difficult to not touch something that doesn’t belong.”
“I know,” the breast replied calmly, “But it is not the pain that bothers me so much as the manner in which it hurts.”
“Stop,” the brain said sternly, “Just stop. Bob’s dead.”
——————————————–
“Why is she starting on that side?” the breast asked of the ultrasound technician, “The lump is all the way on the other side.”
“I don’t know,” answered the brain, “that doesn’t even make any sense.”
——————————————–
“She sure is taking a long time with this,” the brain said quietly.
“Yes, and I think she might be having a difficult time seeing it,” said the breast.
“Are you having a hard time seeing it on the screen?” the mouth vocalized to the technician.
She looked at the eyes and answered, “I’m sorry, I can’t answer that question.”
“Why does she look like a deer in headlights?” the eyes said nervously.
“And why does she sound so nervous?” the ears demanded.
“It’s alright, guys,” the brain tried to soothe, “It’s just that we put her on the spot. She didn’t expect us to ask.”
——————————————–
“Alright. I’m going to go speak to the radiologist,” the technician said to the eyes, “Wait right here.” She stopped at the door and turned around and added, “The doctor might come in, just as a heads up,” then left the room.
“What the hell?” said the brain.
“Ooooo…. We didn’t like the look in those eyes,” the eyes commented.
“Why did she say that?” questioned the ears.
“Shhh… just read the article,” the brain said.
——————————————–
“Ok, you’re all done sweety,” the technician popped her head in the room and announced ten minutes later, “Go ahead and get cleaned up and dressed. I’ll be out here when you’re done.”
“Whew… see, it’s fine,” the brain said.
“Yeah, sure, fine…” the eyed and ears said simultaneously.
“Stop it!” the brain demanded.
——————————————–
“We told you it felt familiar,” the fingertips said to the brain on the way out of the hospital.
“Will you shut the hell up already? Jesus! It’s probably just scar tissue,” the brain responded angrily, “We don’t even have any damn results yet!”
“It hurts the same,” the breast chimed in, “And for the same reasons.”
“What do you know about ‘the same’ since surgery? You’re too fucked up to know how you feel,” the brain insisted.
“You know better than that,” the breast said, its eerily soft, plural voice not cracking, “I know you feel it too.”
“Yeah, and you know somethin else?” they eyes demanded of the brain, “We don’t need some damn results to tell us what the look on that technician’s face meant.”
“And we don’t need em to tell us what that nervousness in her voice meant,” the ears insisted.
“Alright… Look,” the brain said more calmly, “we’re all being a bit irrational here. We’re seeing, hearing and feeling things that aren’t there just because we’re nervous. We all just need to play it cool and settle down. It could be just a cyst!”
The fingertips were angry at this suggestion, though, and yelled at the brain, “God damnit! We told you what we felt. Why won’t you listen to us?”
“It is true,” the breast added calmly, “it feels the same. I remember.”
“Fine. Think what you like. But would you all please do me one favor?” the brain asked, “Could you all please just SHUT THE FUCK UP until we get the results? You’re giving me a SERIOUS headache!”
Written 03-23-08
I first noticed an unfortunate indentation in the surgery area on February 22 while my mom and I were at the Jacksonville Hyatt Regency for the Young Survivors Coalition conference. I was disappointed that the side of my breast had sunken in almost five months after surgery, and I was less than pleased with the overall cosmetic appearance of it, but I figured it was better than having cancer and decided to just be done with it.
Over the course of the following couple of weeks I found myself critically assessing the long dimpled area in the mirror, wondering what any future Mr. Joey B’s would think of my poor, scarred, misshapen ex-beauty queen breast. I decided that it really wasn’t of any immediate importance because, in all honesty, I am not anticipating becoming involved in any such relationships any time in the foreseeable future. So, with apathetic flourish, I gave up on critical self assessments and dissatisfaction.
Meanwhile I had been scouring the internet for information regarding young women with breast cancer for a research project I am doing for my Social Constructions of Reality course. Through my searches I have stumbled upon many personal stories and memoirs of young women breast cancer survivors who found out that, in the end, they would not survive. One of these stories was from a woman living with metastatic disease, which, as I have mentioned before, is when the breast cancer travels to other organs, the bones, blood or soft tissues. In this woman’s story, she found a lump in the area of her breast that the lumpectomy was preformed. Her doctor brushed it off as scar tissue and told her not to worry about it. Well, she worried about it anyway and found out later on that not only did she have a new tumor in the same area, but that the breast cancer had metastasized to her liver and bones.
Naturally these kinds of stories play on the mind of someone going through the same ordeal that these diseased, dying and dead women had, and one night while I lay in bed unable to sleep, as I have many nights as a side effect of chemotherapy premeds, I decided that rather than take Tylenol PM or count sheep, I ought to give myself a breast exam. My left breast, the whole, pristine, unscathed one, felt the same as it always has; no lumps, no scars, no tender areas. The other side, however, is different. As a lingering side effect of breast surgery and lymph node removal, I have had pain and tenderness in my right arm, underarm, side and breast due to nerve damage and irritation. I have been aware of an increase in this pain which I attributed partly to the Taxol, which has caused nerve damage in my arms, legs, hands and feet, leading me to believe that the increase in pain on my right side is not a big deal. But as my paranoid finger tips roved the altered landscape of my right breast, they stumbled upon a little hard spot.
“What is this?” my brain asked my fingertips.
“Feels like a pea,” the fingertips responded.
“What is a pea doing in there?” the brain demanded.
“Don’t know, but we can’t move it,” they told the brain.
“Perhaps it’s just scar tissue,” the brain rationalized.
“Perhaps,” answered the fingertips, “but this consistency sure does feel familiar, and we’ve never felt scar tissue before.”
“But we’re still on chemotherapy,” the brain retorted, “and couldn’t possibly be growing any new cancer already. We haven’t even read any stories about that kind of thing happening. You fingertips are too paranoid.”
“Sure thing, boss,” the fingertips conceded. But the fingertips couldn’t stop touching the area, no matter how many times the rational brain insisted that it was nothing.
I mean, seriously, I was still on chemo!
But even so, it is the case that under circumstances such as cancer, the rational mind has been known to become irrational. For example, a recurring headache for a week is no longer a question of whats in the air, it is a question of whether or not the cancer has spread to the brain. And when blood starts coming out every time you blow your nose, it goes from questioning what’s up with your sinuses to wondering how long you have to live before the cancer takes over your brain and kills you.
Thus the rational mind becoming irrational and then trying to rationalize away it’s paranoia has a tendency to work itself up into quite the tizzy. Knowing that this has been the case before, my mind decided to play it cool and not worry about the whole thing; my mind decided to be calm about it and wait until the next time I went to the chemo center to bring it up to anyone, and my mind felt validated when I mentioned it to the nurse who asked me the standard pre-chemo questions and she responded, “It’s probably just scar tissue, but we’ll have the doctor take a look at it.” My mind was glad that it didn’t get all silly and irrational and go calling the doctor first thing in the morning after I had found it.
That is, until the doctor took a look at it.
The doctor said that we needed to have it scanned right away, that she didn’t like the way the skin was dimpling. She wanted an ultrasound done ASAP. She wanted to know when I found it and why I didn’t call her immediately. Any new lumps, she said, needed to be brought to her attention right away.
And so on my last day of chemotherapy, on the day that I have been looking forward to since I woke up on October 5th, 2007 and was told that I would be needing chemotherapy because, yes, it was in my lymph nodes, I found myself feeling lost, empty, drained, disappointed and frightened. How would I do this all again? What would it mean? Would it mean that I can’t beat it? Would it mean that it was stronger than the strongest drugs they have to combat this kind of thing? Was I going to die from cancer? How could I die from cancer?
I was in a strange mood for the rest of the day, and that night I applied for life insurance policies. I thought that at least I would be able to leave something for my family, help them, give them something; but the next morning an insurance agent called and informed me that I wouldn’t be able to get a life insurance policy for three to five years after my last cancer treatment, and that if I got insurance between the third and fifth years that it would be very expensive.
I felt helpless, crushed and sad. I wondered how far I would be willing to go to get rid of it and what exactly “fighting till the bitter end” would entail. Would I be required to sacrifice quality of life to live an extra couple of days? Would I be able to do all of the things I wanted to do until I died? How would we deal with a blow like this? I’m already such a financial drain on my parents, and my money is almost all gone.
How would I tell my family? How could I possibly tell them?
These thoughts, along with thousands of other, similar thoughts swirled in torrents around my mind, through my night and day and in between.
We celebrated Carrie’s 22nd birthday on Saturday on a Suncruz Casino boat. She did fantastically on the slot machines, and we all had a wonderful time. For those few hours I didn’t think about it, didn’t worry about it, didn’t wonder and fret. I just laughed, played and had fun. But when we were home again and I was driving off in my car, it was all I could think about.
It is Easter Sunday now. I am scheduled for a PET/CT scan on Tuesday at 11am. Cancer patients are supposed to get one of those after they finish chemotherapy anyway to see if the cancer is all gone. I’m not sure when the doctor will call me with the results, but it feels like I can’t know soon enough. I haven’t told anyone about the lump or how concerned the doctor seemed because I don’t want anyone else to go through this slow, mind controlling, obsessive torture. We have been through a lot, my family and I, and I know that watching me go through this has been nearly as difficult as going through it, so I thought I should spare them and do all of the extra worrying myself.
