There is one cool thing about chemotherapy: you get to witness your body being beat down by a foreign substance and then build itself back up again stronger and more durable than before.
However, there is this other, very uncool thing that people savvy to oncology talk call "chemo brain." Not knowing anyone who has gone through chemotherapy, I was not fully aware of the condition and was not at all prepared for it when I began experiencing it first hand.
These two things occur simultaneously, the effects of each increasing with every treatment so that as the body becomes stronger, so does the "chemo brain."
As I have mentioned before, and as I am sure you already knew, chemotherapy attacks all cells equally -- it does not target cancer cells specifically. The effects of this are especially evident in the nausea and vomiting effect of chemo where the cells of the stomach lining are being maimed. But chemotherapy also attacks that essential organ wrapped up and stored on your shoulders.
I am convinced that I am going to have permanent brain damage.
Here's a brief summary of the first two months of treatments I just completed:
The first treatment left my body in a poisoned haze of rebellion and discontentment; "why would you do that to me?" it seemed to scream, and tried to teach me a lesson by refusing to walk in straight lines, digest food properly and allow me to complete normal daily activities like washing dishes. I was weak and my body was dizzy all the way up to my next treatment. I could hardly even hold my niece, which made me feel terrible.
The second treatment irritated my stomach more and chased my hair away, and the poison seemed to be storing itself in my tissues for a more malicious attack down the road, but my body seemed to be thinking something to the effect of, "Alright, fine, you wanna see what I'm made of? Bring it on!" I felt better for the two days before my next treatment, which was nice, although it kind of just pissed me off.
The third treatment had me stumbling out of the Cancer and Blood Disease Center like a drunk out of a bar at closing time, and I really thought I was going to lose it on the way home. I wanted to go bury myself somewhere until it was over, but I couldn't even sleep through it. My equilibrium was dislocated temporarily and I had this tendency to walk into things... things like walls... but my body seemed to be adjusting to the large doses of poison being administered to me bi-weekly and I not only recovered from the treatment pretty quickly, but I felt rather good.
My memory seemed to be affected, though; I couldn't remember appointments and my word recall was noticeably diminished.
The fourth treatment made me sick at the center, despite my hard core nausea pills (there are three of them in a pack, one for the day of, one for the next day, and one for the second day after treatment and they are sold at a hefty $354/pack). I had to get additional nausea medication, administered intravenously for maximum effect, before they would continue my treatment. For the rest of that day and the next day I could barely stand, never mind walk all the way to the door to let the dog out. I have never felt so helpless and pathetic; I seriously don't think I would have been able to stand up and wash a dish to save my life.
However, my body is amazing. It was learning how to deal with the chemo extremely well and while I was indeed knocked completely off my feet for a few days, I recovered even quicker than I did from my third treatment and I almost feel normal. You probably have no idea how amazing you actually feel right now because the way you feel is normal for you, but please believe me when I tell you that chemotherapy gives you a whole new appreciation for feeling healthy, and when it occurred to me that I ought to go for a brisk walk I almost leaped out of my skin for joy that I felt good enough to want to exercise.
Unfortunately, though, my brain malfunctions have worsened. Not only can I not remember things and recall words from my vocabulary, but my ability to listen and pay attention are at an all time low.
First of all, I cannot remember my short term memory. "Hello Jim. My name is Joey. It's nice to meet you. What did you say your name was again?" It is really quite annoying, especially for grocery shopping.
What bothers me more, however, is my inability to recall things that I know I know, like words. You know how sometimes you'll try to think of a word but you temporarily forget it? It's right there, hiding around a corner that you can almost see around, but you're at just the wrong angle to get a glimpse? Well "chemo brain" is nothing like that. The word isn't hiding anywhere - it's simply not there. It's not on the tip of your tongue and you have no hope that you're going to remember the word you wanted to use - all you know is that you used to know a word that conveyed the thing you're trying to communicate, but you can't even remember what letter that word used to start with. There are no walls or corners or shadows, there is only a vast expanse of very well lit white where your diverse landscape used to exist, showcasing how thoroughly you're being cleansed.
While that alone makes me feel stupid when talking to people, my inability to keep a train of thought and to pay attention to what people are saying to me makes me want to avoid social situations all together. I'll be in the middle of a conversation with someone and they'll be talking to me and I will just stop registering what they're saying and zone out, and my internal monologue is going "Hey! Joey! Listen! Pay attention! What are you doing? It's not that hard, just listen, damnit, LISTEN!" I try to force myself to focus on what the person is saying, and I'm looking at them the whole time but I cannot decipher what words they are using; all my brain registers is a kind of humming buzz. As I start to zone back in it's like coming up out of a swimming pool and all of those muffled, jumbled sounds become discernible utterances.
By this point, however, I have completely forgotten what we were talking about in the first place, and when the person looks back at me waiting for a response, my only viable course of action is to admit that I have no idea what's going on.
Sunday, December 30, 2007
Thursday, December 20, 2007
I Shall be Victorious
When they say “fighting breast cancer,” they’re not kidding; it’s an all out cellular war waged against yourself, all because of those few rogue cells that you can’t identify and that couldn’t be reasoned with even if you did. In this situation, everyone is the enemy.
With every battle the injuries to my troops increase and the stuff we use to fight our unseen enemy with builds up in the dark recesses of my body, amplifying the potency of every onslaught against myself. In my imagination, as I sit in the recliner allowing my “cure” to be slow dripped into me, heavily armed microscopic men run for cover, trying to get away from the greatly injurious stuff that attacks all cells equally, regardless of race, creed, color or cancer; but it is of no use - they’re hit, each time worse than the last. In my mind, I can hear their helpless screams as their eyes burn, their lungs seize and their flesh melts away.
It becomes a battle just to be able to walk across a room without walking into anything - never mind walking in any semblance of a straight line - and major concentration and war time tactics are employed when walking any distance exceeding 20 feet to keep from falling over.
For now, though, we rejoice, because we have taken the last major hit and shall hence forth fight smaller, less potent battles against that which shall make me better; so while the injury from this last fight is still raw, and while the remainder of my hair pushes itself away from this poisoned and inhospitable terrain, we smile, because even through the worst of it, I didn’t puke.
With every battle the injuries to my troops increase and the stuff we use to fight our unseen enemy with builds up in the dark recesses of my body, amplifying the potency of every onslaught against myself. In my imagination, as I sit in the recliner allowing my “cure” to be slow dripped into me, heavily armed microscopic men run for cover, trying to get away from the greatly injurious stuff that attacks all cells equally, regardless of race, creed, color or cancer; but it is of no use - they’re hit, each time worse than the last. In my mind, I can hear their helpless screams as their eyes burn, their lungs seize and their flesh melts away.
It becomes a battle just to be able to walk across a room without walking into anything - never mind walking in any semblance of a straight line - and major concentration and war time tactics are employed when walking any distance exceeding 20 feet to keep from falling over.
For now, though, we rejoice, because we have taken the last major hit and shall hence forth fight smaller, less potent battles against that which shall make me better; so while the injury from this last fight is still raw, and while the remainder of my hair pushes itself away from this poisoned and inhospitable terrain, we smile, because even through the worst of it, I didn’t puke.
Wednesday, December 12, 2007
Internal Struggles of Firey Sandstorms and Owie
Every day I drive 20 minutes to the Cancer and Blood Disease Center to get a shot of Neupogen. I get this shot everyday because one of the chemotherapies I am on destroys white blood cells and platelets like gasoline and fire destroy ants - quickly and violently. This chemotherapy is called Adriamycin, aka The Red Devil, and is a particularly harsh medication, causing massive destruction to everything good (and hopefully everything bad) in my body. It more or less has the effect of not only destroying my immune system, but also of destroying the production of my immune system.
The Neupogen shots, which burn going in, help the chemo ridden body by stimulating the creation of new white blood cells and, toward the end of the two weeks between treatments, manages to push start the bones into creating white blood cells on their own again. The point of this is not merely to help prevent me from getting colds easily, however, because while that is definitely a concern, the main concern is preventing neutrophenia, which is a deficiency in a particular type of bacteria fighting white blood cells. Neutrophenia in breast cancer patients can very quickly become life threatening because the adriamycen completely destroys most of these cells and creates a bacterial infection producing haven. My white blood cell production ceases for between 9-12 days before my body begins to recover and regain its functionality, at which point I receive another treatment and start all over again.
At this point, when my body starts producing white blood cells on its own, the Neupogen serves to make my bones work quite hard to stimulate excess production and make up for lost time, which is very strongly noted in the bones.
The pain induced by this extra stimulation is, like everything else chemo related, difficult for me to describe because I have never felt anything even similar to it.
I usually start feeling it in my legs as one of those types of pains that desperately wants you to soak, stretch and rub it, and it seems to me that my Femurs are the most zealous over-achiever bones in my body. As the pain becomes more intense, it also spreads and changes in nature; usually joints, especially my hips, knees and shoulders, are the next to join in. The pain starts turning into a powerful ache that hurts regardless of movement and is past the point of wanting to be rubbed out. The hips and thighs become so internally saturated with aching pain that going up stairs, crouching, bending and twisting all become extremely difficult and incredibly painful. Moving in general becomes highly irritating.
Eventually the ache seeps into all the bones and sets. At this point, I have learned, it is advisable to avoid all sneezing and coughing. The intense winds created by those two actions stir the scorching desert sands laying dormant in the bones and thrust forth storms of uncontrollable force made of sand, fire and ice. These storms blast through and reverberate within the sternum and rib cage, penetrating, burning and stripping with fire and ice.
Because my immune system is under heavy attack and suffering severe causalities, and because it is December, with its stress, holidays, colds, flus, tourists and fickle weather, sneezing and coughing come far too regularly to this foreign existence of mine.
The intensity and true feeling of this pain is difficult to properly convey, for, as I have said, it is nothing that I have ever felt before. The aching as I have described it is only similar to other pain I have felt in the way that it wants relief in the beginning, but the way that the bones hurt was previously completely foreign.
The worst of it only lasts a few hours -- from about five hours after I am injected (usually around 10am) until I fall asleep at night (around 11pm) -- and it only gets really bad in the last two or three days before my next treatment, because the rest of the time my bones aren't producing white blood cells on their own and therefore are not being overworked. Granted, the ache and difficulty with movement occur for about the last five days of the cycle, but it's not all sand and fire storms, so at least I've got that going for me.
And besides, intense aching and infernal sandstorms that ripple outward from the depths of my bones are way better than neutropenic fever, infection and death.
The Neupogen shots, which burn going in, help the chemo ridden body by stimulating the creation of new white blood cells and, toward the end of the two weeks between treatments, manages to push start the bones into creating white blood cells on their own again. The point of this is not merely to help prevent me from getting colds easily, however, because while that is definitely a concern, the main concern is preventing neutrophenia, which is a deficiency in a particular type of bacteria fighting white blood cells. Neutrophenia in breast cancer patients can very quickly become life threatening because the adriamycen completely destroys most of these cells and creates a bacterial infection producing haven. My white blood cell production ceases for between 9-12 days before my body begins to recover and regain its functionality, at which point I receive another treatment and start all over again.
At this point, when my body starts producing white blood cells on its own, the Neupogen serves to make my bones work quite hard to stimulate excess production and make up for lost time, which is very strongly noted in the bones.
The pain induced by this extra stimulation is, like everything else chemo related, difficult for me to describe because I have never felt anything even similar to it.
I usually start feeling it in my legs as one of those types of pains that desperately wants you to soak, stretch and rub it, and it seems to me that my Femurs are the most zealous over-achiever bones in my body. As the pain becomes more intense, it also spreads and changes in nature; usually joints, especially my hips, knees and shoulders, are the next to join in. The pain starts turning into a powerful ache that hurts regardless of movement and is past the point of wanting to be rubbed out. The hips and thighs become so internally saturated with aching pain that going up stairs, crouching, bending and twisting all become extremely difficult and incredibly painful. Moving in general becomes highly irritating.
Eventually the ache seeps into all the bones and sets. At this point, I have learned, it is advisable to avoid all sneezing and coughing. The intense winds created by those two actions stir the scorching desert sands laying dormant in the bones and thrust forth storms of uncontrollable force made of sand, fire and ice. These storms blast through and reverberate within the sternum and rib cage, penetrating, burning and stripping with fire and ice.
Because my immune system is under heavy attack and suffering severe causalities, and because it is December, with its stress, holidays, colds, flus, tourists and fickle weather, sneezing and coughing come far too regularly to this foreign existence of mine.
The intensity and true feeling of this pain is difficult to properly convey, for, as I have said, it is nothing that I have ever felt before. The aching as I have described it is only similar to other pain I have felt in the way that it wants relief in the beginning, but the way that the bones hurt was previously completely foreign.
The worst of it only lasts a few hours -- from about five hours after I am injected (usually around 10am) until I fall asleep at night (around 11pm) -- and it only gets really bad in the last two or three days before my next treatment, because the rest of the time my bones aren't producing white blood cells on their own and therefore are not being overworked. Granted, the ache and difficulty with movement occur for about the last five days of the cycle, but it's not all sand and fire storms, so at least I've got that going for me.
And besides, intense aching and infernal sandstorms that ripple outward from the depths of my bones are way better than neutropenic fever, infection and death.
Tuesday, December 11, 2007
I Remain Unconvinced
This morning, while I sat on the floor at the coffee table staring blankly out the window thinking about nothing in particular and eating chocolate peanut butter ice cream, it suddenly occurred to me that lots of people die from cancer – all kinds of cancer – and more specifically that lots of women die from breast cancer. Now, while I have always fully comprehended the fact that cancer is a serious, life threatening disease, and while I have been with the constant understanding that I have breast cancer (quiet killer of women), I have never considered my situation serious or life threatening. Rather, I have had the tendency to continuously laugh at myself and make jokes about cancer – which I must say that I do not recommend unless you are at the point that you look like you have cancer, because if you do not yet appear to be afflicted and people hear you making jokes about your condition in public, you’ll get extremely disapproving looks, for morally superior people will automatically categorize you as a cold hearted bitch or unaware jerk.
I’m not sure if it was the peanut butter, the chocolate ice cream, or the combination of the two at 8am, but when I considered the facts this morning, I suddenly became acutely aware of my own mortality. This realization dumbfounded me – how could I, who have always been a relatively healthy individual, have something so aggressively deadly inside me? It had already crept into my lymph nodes and was on the verge of expanding the map, like an internalized version of Rise of Nations -- if its first large city hadn’t been so close to the edge, my capital would be in a very precarious position right now. The thing with this game, though, is that it’s me playing against myself; some rogue civilian cell of mine mutinied and started building its own separate, enemy city in my country. Thankfully it built on the outskirts where that kind of thing is more noticeable, not to mention frowned upon.
But who really wants to be killed by some cellular defector? I mean, if I’m going to die prematurely, I would at least like it to be by means of something external to myself; I would rather be mauled to death by a bear than die from some internal flaw. At least a bear is big, powerful, protective of its young and, most importantly, not me. Cancer is so microscopic and non-sentient. The idea of being under siege by something like that is really quite revolting.
Despite these realizations and the thought processes that accompany them, though, I remain skeptical of Bob’s power over me. It’s not that I feel that I can out think him, or even that I’m better than Bob, it’s just that for some reason I don’t believe in him. I’m alive and he’s living in me, which means he’s living off of my energy, and since it’s mine I can do what I want with it, therefore I’ll kill him. The End. I win.
It’s not that simple, straight forward and easy, though, and I didn’t really realize that until this morning. You can’t just say “Screw you, Bob, you’ve overstayed your welcome, get out of here,” and expect it to work. It’s not just there to stay, it’s there to take over.
Considering all of this, my mind is surprisingly similar to the way it was before my startling and all too obvious revelations of the morning, although it is simultaneously completely changed, like when they brought out the colorful new twenty dollar bills; it has the same function, value and overall appearance, but it’s a bit more up to date with finer detail, is more colorful and slightly more playful. But if all of my doctors told me that the survival rate for people in my category was 10%, I would automatically assume that I was in that 10%, and if all of my doctors told me that the invasion was out of control and I could expect to be taken over within a year, I would laugh harder than I did when I found out I had cancer in the first place.
I’m not sure if it was the peanut butter, the chocolate ice cream, or the combination of the two at 8am, but when I considered the facts this morning, I suddenly became acutely aware of my own mortality. This realization dumbfounded me – how could I, who have always been a relatively healthy individual, have something so aggressively deadly inside me? It had already crept into my lymph nodes and was on the verge of expanding the map, like an internalized version of Rise of Nations -- if its first large city hadn’t been so close to the edge, my capital would be in a very precarious position right now. The thing with this game, though, is that it’s me playing against myself; some rogue civilian cell of mine mutinied and started building its own separate, enemy city in my country. Thankfully it built on the outskirts where that kind of thing is more noticeable, not to mention frowned upon.
But who really wants to be killed by some cellular defector? I mean, if I’m going to die prematurely, I would at least like it to be by means of something external to myself; I would rather be mauled to death by a bear than die from some internal flaw. At least a bear is big, powerful, protective of its young and, most importantly, not me. Cancer is so microscopic and non-sentient. The idea of being under siege by something like that is really quite revolting.
Despite these realizations and the thought processes that accompany them, though, I remain skeptical of Bob’s power over me. It’s not that I feel that I can out think him, or even that I’m better than Bob, it’s just that for some reason I don’t believe in him. I’m alive and he’s living in me, which means he’s living off of my energy, and since it’s mine I can do what I want with it, therefore I’ll kill him. The End. I win.
It’s not that simple, straight forward and easy, though, and I didn’t really realize that until this morning. You can’t just say “Screw you, Bob, you’ve overstayed your welcome, get out of here,” and expect it to work. It’s not just there to stay, it’s there to take over.
Considering all of this, my mind is surprisingly similar to the way it was before my startling and all too obvious revelations of the morning, although it is simultaneously completely changed, like when they brought out the colorful new twenty dollar bills; it has the same function, value and overall appearance, but it’s a bit more up to date with finer detail, is more colorful and slightly more playful. But if all of my doctors told me that the survival rate for people in my category was 10%, I would automatically assume that I was in that 10%, and if all of my doctors told me that the invasion was out of control and I could expect to be taken over within a year, I would laugh harder than I did when I found out I had cancer in the first place.
Monday, December 10, 2007
My Pet Cancer
I've been calling it "Bob" ever since we found the lump. There is no particular reason that I chose that name, and no particular reason I named it, it's just that one day Ben and I were standing around and I said, "I think I'll call it Bob," and so I did.
People seem to find it incredibly difficult to call cancer what it is, and instead of saying "I heard you have breast cancer," they'll say, "I heard you're sick."
But I'm not sick. I have cancer. There is a difference.
On the other hand, I not only have no problem saying "I have cancer," but I also seem to want to humanize it somewhat by calling it Bob. Psychologists could probably come up with dozens of reasons why I would do this, but I think it's because it makes it easier for me to consider everything in terms of fighting a unit, not a concept. I know that cancer is a bunch of cells that create tumors and is therefore a thing, but thinking of it as a single unit and calling it Bob seems, in my mind, to be a more direct thought process. I guess what I'm trying to say is that calling it Bob cuts out the large, imposing idea that the term "cancer" carries with it, all of the images, and makes it more of a thing that I can defeat.
A friend of mine was reluctant to even say "cancer" when discussing the technicalities of my cancer because, he said, he didn't want to empower it. I told him that I call it Bob and he seemed to be rather alarmed by this, but I explained to him that by naming it I was kind of making it mine, which kind of makes me feel like I have more control, even if I don't.
People seem to find it incredibly difficult to call cancer what it is, and instead of saying "I heard you have breast cancer," they'll say, "I heard you're sick."
But I'm not sick. I have cancer. There is a difference.
On the other hand, I not only have no problem saying "I have cancer," but I also seem to want to humanize it somewhat by calling it Bob. Psychologists could probably come up with dozens of reasons why I would do this, but I think it's because it makes it easier for me to consider everything in terms of fighting a unit, not a concept. I know that cancer is a bunch of cells that create tumors and is therefore a thing, but thinking of it as a single unit and calling it Bob seems, in my mind, to be a more direct thought process. I guess what I'm trying to say is that calling it Bob cuts out the large, imposing idea that the term "cancer" carries with it, all of the images, and makes it more of a thing that I can defeat.
A friend of mine was reluctant to even say "cancer" when discussing the technicalities of my cancer because, he said, he didn't want to empower it. I told him that I call it Bob and he seemed to be rather alarmed by this, but I explained to him that by naming it I was kind of making it mine, which kind of makes me feel like I have more control, even if I don't.
Friday, December 7, 2007
The Dowside of Being Noteworthy
During one of my many visits to the Cancer and Blood Disease Center my oncologist said to me, "You are very unique, Joanna." I laughed, knowing what she meant, and said, "Why thank you." She smiled back and said, "It's not a good thing when the medical community finds you interesting."
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