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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.
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.

Sometimes when I pass by a reflective surface of some sort and turn my head to look, I am taken aback by what peers back at me.
It is not me in there looking out, that is for certain. I am a vibrant, happy, fun loving sister/aunt/daughter/friend/girlfriend who has a full and enjoyable life and loves to do all kinds of stuff at all different times of the day with the people I love; but that person in the mirror — that person who could not possibly be me — has quite obviously had the life sucked out of them by some terrible turn of events.
The person in the mirror is pale and sickly, void of hair, eyebrows and eyelashes. They are alien — listless and lacking facial definition. I look at them in shock, bewildered at how they got in the mirror, but they wear only an expression of desperate and hopeless blankness, seemingly unable to register anything else, any other emotion, any emotion at all. Perhaps it is just I who cannot read the emotion on their alien face, though, so I concentrate harder.
I look into their eyes, their dull, tired, shadowed eyes, and I look for the life that I know is there, somewhere — it has to be — but I can’t see it… why can’t I see it?
On Tuesday, January 8th of 2008, I started graduate school at USF. I suppose some of my friends and family might have thought something along the lines of, “well it’s about damn time,” but, honestly, I wouldn’t trade all of the experiences I’ve had in the past four years for a Ph.D, not to mention that I’ve contemplated everything from law school to master sommelier since I received my BA. Now, though, while I’m going through chemotherapy and putting myself several thousand dollars further into debt every week, seemed like the perfect time to start commuting from Homosassa to Tampa twice a week to attend grad school.
I’m taking two classes: Social Constructions of Reality on Tuesday nights and Communicating Race and Racism on Wednesday nights. So far, it has been interesting.
The first week was extraordinarily difficult — more so than I anticipated. As I have mentioned before, I am currently finding paying attention, retaining information and speaking in a coherent manner an arduous task. I have a tendency to lose focus, forget everything and repeat myself a lot while talking in circles. As you may be able to imagine, reading text book type material is not easy.
It took me the entire week to finish the reading for my two classes; I would be reading and realize that I didn’t know what I had just read, and at times the words just didn’t look like English writing, so I would read the sentence again, then still not be able to gain any meaning from the words and read it again, go back to the beginning of the paragraph, still not understand what information the author was trying to relay, finish the paragraph in hopes of understanding something, and then read the whole paragraph over again. This is how I read 272 pages of assigned reading.
Now, I know that 272 pages should be a breeze considering how much we were assigned at the HC, but please don’t hold it against me until I find myself reading exceptionally slowly after I’m all done with chemotherapy and radiation. Two months after I’m all done with that, it’s fair game and you’re welcome to ridicule me openly, but until then I will continue to cite “chemo brain” as the source of my constant in-articulation and inability to focus/understand/remember.
However, it is entirely possible that my brain, like the rest of my body, is learning to recover from the poison, for I have found this week much less demoralizing than last week. I have found that I am able to remember things much easier, even number sequences, which before was more or less impossible. I also don’t zone out so easily and I’m only having to re-read sentences and paragraphs once or twice before I at least sort of get what the author is getting at. My favorite part, though, is that I sound slightly less brainless when I talk.
I believe that all of the brain exercise that I’ve been getting kind of made my brain say “Oh, crap, I have to process information! I’d better start fixing this place up, then.” And so it at least seems like it’s getting better, which is quite relieving.
The best thing about starting school right now, though, is that I feel more normal and less bored. Sure, it might be a little frustrating at times, but I’m doing something that I’d be doing under more normal circumstances, and it’s making me work and put myself in the “normal” category of “student,” which kind of helps to blur the definitive outline of “cancer patient,” which is nice for me because it kind of helps to prove that category less viable in other people’s minds, therefore causing them to view me more like they did before and thus causing them to tell me less frequently that they pray for me every night.
So, basically, this school thing is good, and I think I’ll get through this semester just fine.



