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."
Monday, November 26, 2007
One and Two and .....
Bad things happen in threes.
I got breast cancer.
My brother flipped my mom's open top Jeep while NOT wearing a seatbelt, broke the windshield with his head, broke two vertebre and fractured his tail bone in two places.
This leaves me worried about lucky number three.
I got breast cancer.
My brother flipped my mom's open top Jeep while NOT wearing a seatbelt, broke the windshield with his head, broke two vertebre and fractured his tail bone in two places.
This leaves me worried about lucky number three.
On Getting Buzzed
On Thanksgiving eve of 2007, my hair started falling out.
This is, of course, to be expected, mostly because all of my nurses and doctors have told me that it WILL, without fail, fall out within 2-4 weeks of my first treatment. Mine was within 15 days.
I’ve said all along that when my hair started falling out I would simply shave my head and be fine with it. I was resolved to take it in stride, to brush it off like it was no big deal and not let it bother me. I told everyone that I would be a-ok and that it didn’t matter and that all I really needed to do was prepare myself for the event by cutting my back length hair very short, which I did… twice.
The thing is that it is a very unsettling moment when you run your fingers through your hair and come up with an unusually large quantity of it in your hand; in that moment even the most determined heart suddenly falters, for it is in that moment that all of the inward feelings of sickness are prominently and violently expressed in a physically outward manner that causes the brain to almost shriek, “Oh God, I’m actually as ill as I feel.”
So at first I was a little upset. Within this upset, however, I found new energy which I used to empty the dishwasher, do the dishes in the sink, make corn bread for my stuffing recipe and mess up part of another recipe. As the adrenaline high wore off, though, I resorted to calling my mom.
I couldn’t stop running my fingers through my hair and then looking to see how much I’d collected, though, and so while on the phone with my mom I decided that I ought to put my hair in a glass to help keep it from getting into everything. So for about an hour I sat on the phone with various people while running my fingers through my hair and placing all of the loose strands in a cup. Now, while there is something absolutely mesmerizing about effortlessly taking the hair from your head and placing it in a cup before you, it is equally disconcerting and has the ill effect of causing a resolute mind to crumble just long enough for the affected soul to release her frustration in the form of unwanted and demanding tears.
It is in this confusion of weakened resolve, frustration and strangeness that I found myself desperately wanting a razor to rid myself of the increasing burden of my hair. Unfortunately no one had a functioning electric razor in their possession at that time, and it was late and I was tired and at least 20 minutes from the nearest 24 hour Wal-Mart; thankfully, however, I have been incredibly fortunate to find myself in the company of amazing family and friends, and my mother and father drove to Wal-Mart at 10:30pm, bought me an electric razor, and then drove 20 minutes each way to leave it in my unlocked car so that I might use it in the morning.
The next morning Bryan and I stepped outside and unceremoniously shaved my head.
And so it came to be that on Thanksgiving 2007, I sported my new buzz cut with bald patches at two family dinners, was thankful for my friends and family in a whole new way and minimized the amount of hair in my stuffing.
This is, of course, to be expected, mostly because all of my nurses and doctors have told me that it WILL, without fail, fall out within 2-4 weeks of my first treatment. Mine was within 15 days.
I’ve said all along that when my hair started falling out I would simply shave my head and be fine with it. I was resolved to take it in stride, to brush it off like it was no big deal and not let it bother me. I told everyone that I would be a-ok and that it didn’t matter and that all I really needed to do was prepare myself for the event by cutting my back length hair very short, which I did… twice.
The thing is that it is a very unsettling moment when you run your fingers through your hair and come up with an unusually large quantity of it in your hand; in that moment even the most determined heart suddenly falters, for it is in that moment that all of the inward feelings of sickness are prominently and violently expressed in a physically outward manner that causes the brain to almost shriek, “Oh God, I’m actually as ill as I feel.”
So at first I was a little upset. Within this upset, however, I found new energy which I used to empty the dishwasher, do the dishes in the sink, make corn bread for my stuffing recipe and mess up part of another recipe. As the adrenaline high wore off, though, I resorted to calling my mom.
I couldn’t stop running my fingers through my hair and then looking to see how much I’d collected, though, and so while on the phone with my mom I decided that I ought to put my hair in a glass to help keep it from getting into everything. So for about an hour I sat on the phone with various people while running my fingers through my hair and placing all of the loose strands in a cup. Now, while there is something absolutely mesmerizing about effortlessly taking the hair from your head and placing it in a cup before you, it is equally disconcerting and has the ill effect of causing a resolute mind to crumble just long enough for the affected soul to release her frustration in the form of unwanted and demanding tears.
It is in this confusion of weakened resolve, frustration and strangeness that I found myself desperately wanting a razor to rid myself of the increasing burden of my hair. Unfortunately no one had a functioning electric razor in their possession at that time, and it was late and I was tired and at least 20 minutes from the nearest 24 hour Wal-Mart; thankfully, however, I have been incredibly fortunate to find myself in the company of amazing family and friends, and my mother and father drove to Wal-Mart at 10:30pm, bought me an electric razor, and then drove 20 minutes each way to leave it in my unlocked car so that I might use it in the morning.
The next morning Bryan and I stepped outside and unceremoniously shaved my head.
And so it came to be that on Thanksgiving 2007, I sported my new buzz cut with bald patches at two family dinners, was thankful for my friends and family in a whole new way and minimized the amount of hair in my stuffing.
Friday, November 9, 2007
Slicing Tomatoes
After I got home on the first day I didn’t want to go straight to bed. I wanted to stay up for at least a little while, so I decided I’d make salsa.
I got all of my ingredients out – the tomatoes, mango and onion were all in a bowl on the kitchen counter, the spices were in the cabinet and the cilantro was in the refrigerator. I was feeling very sluggish and a bit spacey -- almost kind of drunk, but in a very uncomfortable way -- so I was being very slow and careful with the knife.
As I was slicing the tomatoes, which were room temperature, I discovered that my sense of touch had been altered by the poison that had been slow dripped into my veins an hour earlier; I was acutely aware of the feeling in my fingertips, and while carefully cutting the tomatoes into small bits, I noticed that the juices felt unusually cold, almost eerily cold, like that skin tingling chill that comes from a damp wooded area on a warm night.
It was very strange, and I tried to explain it to Bryan, who was in the kitchen with me, but then I discovered that my brain had been poisoned as well.
I got all of my ingredients out – the tomatoes, mango and onion were all in a bowl on the kitchen counter, the spices were in the cabinet and the cilantro was in the refrigerator. I was feeling very sluggish and a bit spacey -- almost kind of drunk, but in a very uncomfortable way -- so I was being very slow and careful with the knife.
As I was slicing the tomatoes, which were room temperature, I discovered that my sense of touch had been altered by the poison that had been slow dripped into my veins an hour earlier; I was acutely aware of the feeling in my fingertips, and while carefully cutting the tomatoes into small bits, I noticed that the juices felt unusually cold, almost eerily cold, like that skin tingling chill that comes from a damp wooded area on a warm night.
It was very strange, and I tried to explain it to Bryan, who was in the kitchen with me, but then I discovered that my brain had been poisoned as well.
Thursday, November 8, 2007
Like the Skin Under Your Fingernails
It hurts.
Oh yes… it hurts.
It isn’t muscle pain – no, it doesn’t hurt when I lift things or move things or crouch a certain way – and it isn’t bone pain - I don’t have that flu like aching/throbbing throughout my body.
No.
It’s my skin.
It’s every single layer of every inch of my skin, burning, tearing and screaming with every friction inducing movement.
It doesn’t matter how soft the touch is, how soft the material is, or how cushioned the area is… it hurts. Wearing clothes hurts because they just can’t be soft enough and they slide and pull; laying in bed hurts because there is pressure, soft, cushioned pressure; being touched hurts, even by the softest most loving and well intentioned hands, even just a hand on my shoulder, even my own hand on my own arm or my own fingers through my own hair.
A light hand on my forearm asking if I'm ok brings with it a hot wave of pain through the entirety of the skin between my fingers and elbow, and a sweet kiss on the cheek makes me dizzy with aching and brings tears to my eyes.
The least painful position to be in is standing with my hands resting on the backs of chairs or on a counter top or anywhere but by my side, and the most comfortable thing to be in is the softest blanket I could find, ever so carefully and loosely wrapped around me so that I don’t need to hold it or apply unnecessary pressure to any part of me.
I wonder how I’ll fall asleep tonight.
Oh yes… it hurts.
It isn’t muscle pain – no, it doesn’t hurt when I lift things or move things or crouch a certain way – and it isn’t bone pain - I don’t have that flu like aching/throbbing throughout my body.
No.
It’s my skin.
It’s every single layer of every inch of my skin, burning, tearing and screaming with every friction inducing movement.
It doesn’t matter how soft the touch is, how soft the material is, or how cushioned the area is… it hurts. Wearing clothes hurts because they just can’t be soft enough and they slide and pull; laying in bed hurts because there is pressure, soft, cushioned pressure; being touched hurts, even by the softest most loving and well intentioned hands, even just a hand on my shoulder, even my own hand on my own arm or my own fingers through my own hair.
A light hand on my forearm asking if I'm ok brings with it a hot wave of pain through the entirety of the skin between my fingers and elbow, and a sweet kiss on the cheek makes me dizzy with aching and brings tears to my eyes.
The least painful position to be in is standing with my hands resting on the backs of chairs or on a counter top or anywhere but by my side, and the most comfortable thing to be in is the softest blanket I could find, ever so carefully and loosely wrapped around me so that I don’t need to hold it or apply unnecessary pressure to any part of me.
I wonder how I’ll fall asleep tonight.
Wednesday, November 7, 2007
Conflict of Interests
I had never wondered what it would feel like to receive chemotherapy until I found out that it was entirely likely I was going to be required to experience it first hand. Once I discovered that I would indeed be finding out exactly what it was like, I timidly pondered the various possibilities in the recesses of my curiosity, but generally avoided thinking about it. There was only so much timidity my mind would put up with, though, and the three days prior to my first chemo treatment was a grotesque orgy of nervous speculation. But it was cathartic, and on Tuesday the 6th of November I swept into the Cancer and Blood Disease Center like a cool breeze and went through the motions like there was nothing curious about it.
And nothing new, different or odd occurred on that morning/afternoon, I know – it’s been going on for years, infiltrating millions of people’s lives and improving with the evolution of science and medicine – but it was all new and different and previously nerve wracking to me.
When the time came for it to infiltrate my little world, though, I was as prepared as I could be and grinned, bared it and took it like a champ; a champ that stayed in bed for most of the rest of the day afterwards, but a champ nonetheless.
It was a slightly strange thing to experience because every evolutionary instinct that has kept our species in existence was kicking and screaming at me to get away from that stuff immediately. Of course this reaction didn’t happen right away because they don’t start administering the chemo until about an hour into the process, but as soon as those toxic substances began eroding my veins and waging war against my entire cellular being, my life energies demanded that I rip the iv out directly and find means to a blood transfusion forthwith.
Here’s what happens:
First they do blood work, because they always do blood work. The vein in my left arm is getting really pissed off about all the stabbing and sucking that is being done to it on at least a bi-weekly basis (they can’t take blood from the right arm because that’s the side I had lymph nodes removed from)and it has recently started to refuse closing up after blood is drawn, figuring it might as well just stay open permanently.
After they do the blood work and decide whether or not you’re well enough to get chemo, they send you in the back where all of the treatments take place. It’s basically one very large room separated into a couple of different areas by tall book cases and dividers that section off a nurse's station, a couple of patient areas and a little family waiting area.
You walk down a long, meandering hallway from the waiting area and through an archway; ten feet back is the nurse’s desk. Beyond the nurse’s desk are tables, book shelves, filing cabinets, storage closets, and mixing areas; basically the typical kind of nurse’s station you'll find in any medical facility, except this one has a very high concentration of highly toxic chemicals meant to be injected into people. All along the walls behind you to your right and left are these old blue recliners with a plastic type material covering them, and next to every recliner is a metal bag hanger on wheels that they hang the saline, steroids and chemo from. On the far right hand side is the family waiting area, and just beyond that is the main treatment area with new, cloth covered recliners and metal bag hangers, some TV’s and magazine racks.
Anyway, so you go back there and hand them your paper work and they sit you down, ask you a bunch of questions and stab you with an iv. In my case, I have a port, which is really good because that will help to preserve my veins in the wake of the toxic chemicals that are supposedly going to cure me, and when they put the iv in my port, they call it “tapping the port,” what they do is they have this fat needle with this thimble like top with wings that they insert with a harsh stabbing motion. Now when I say stab, I mean they push that thing in hard, and I am pretty certain that the nurse that "tapped my port" the first time has never had a port or known anyone who has had a port, because when I asked if it hurt, she said that it would be a pinch because it was going through skin, but that wasn’t a pinch, that was a stabbing pain, and it burned... oh did it burn.. it was like the needle was coated in acid, lemon juice and salt all at the same time, and it hurts when the port gets pushed on anyway, and they pushed hard!
After they “tap the port” they drip the premeds – saline and steroids – through the iv. That takes about an hour.
Next is the Adriamycin (Doxorubicin), which is red and comes in two very large syringes. It is slow pushed in by a nurse over the course of about 20 minutes while saline is simultaniously dripped in from a bag. They have to do it slow and dilute it because it’s very irritating on the veins.
Then they hook up the Cytoxan. It slow drips from a bag for a little over an hour, again with the slowness because it’s harsh on the veins.
The last thing they do is flush it all in with more saline, and then use a syringe to inject some blood thinner so the port doesn’t clog up, then more saline to flush that in.
By the time I left I was exhausted and within two hours of being home I crawled into bed and stayed there for the rest of the day and night. There is no way to describe what my body was experiencing other than to say that it felt like I’d had poison slow dripped into my veins over the course of a couple of hours. It was a kind of masochistic slow torture that went against my every instinct.
And nothing new, different or odd occurred on that morning/afternoon, I know – it’s been going on for years, infiltrating millions of people’s lives and improving with the evolution of science and medicine – but it was all new and different and previously nerve wracking to me.
When the time came for it to infiltrate my little world, though, I was as prepared as I could be and grinned, bared it and took it like a champ; a champ that stayed in bed for most of the rest of the day afterwards, but a champ nonetheless.
It was a slightly strange thing to experience because every evolutionary instinct that has kept our species in existence was kicking and screaming at me to get away from that stuff immediately. Of course this reaction didn’t happen right away because they don’t start administering the chemo until about an hour into the process, but as soon as those toxic substances began eroding my veins and waging war against my entire cellular being, my life energies demanded that I rip the iv out directly and find means to a blood transfusion forthwith.
Here’s what happens:
First they do blood work, because they always do blood work. The vein in my left arm is getting really pissed off about all the stabbing and sucking that is being done to it on at least a bi-weekly basis (they can’t take blood from the right arm because that’s the side I had lymph nodes removed from)and it has recently started to refuse closing up after blood is drawn, figuring it might as well just stay open permanently.
After they do the blood work and decide whether or not you’re well enough to get chemo, they send you in the back where all of the treatments take place. It’s basically one very large room separated into a couple of different areas by tall book cases and dividers that section off a nurse's station, a couple of patient areas and a little family waiting area.
You walk down a long, meandering hallway from the waiting area and through an archway; ten feet back is the nurse’s desk. Beyond the nurse’s desk are tables, book shelves, filing cabinets, storage closets, and mixing areas; basically the typical kind of nurse’s station you'll find in any medical facility, except this one has a very high concentration of highly toxic chemicals meant to be injected into people. All along the walls behind you to your right and left are these old blue recliners with a plastic type material covering them, and next to every recliner is a metal bag hanger on wheels that they hang the saline, steroids and chemo from. On the far right hand side is the family waiting area, and just beyond that is the main treatment area with new, cloth covered recliners and metal bag hangers, some TV’s and magazine racks.
Anyway, so you go back there and hand them your paper work and they sit you down, ask you a bunch of questions and stab you with an iv. In my case, I have a port, which is really good because that will help to preserve my veins in the wake of the toxic chemicals that are supposedly going to cure me, and when they put the iv in my port, they call it “tapping the port,” what they do is they have this fat needle with this thimble like top with wings that they insert with a harsh stabbing motion. Now when I say stab, I mean they push that thing in hard, and I am pretty certain that the nurse that "tapped my port" the first time has never had a port or known anyone who has had a port, because when I asked if it hurt, she said that it would be a pinch because it was going through skin, but that wasn’t a pinch, that was a stabbing pain, and it burned... oh did it burn.. it was like the needle was coated in acid, lemon juice and salt all at the same time, and it hurts when the port gets pushed on anyway, and they pushed hard!
After they “tap the port” they drip the premeds – saline and steroids – through the iv. That takes about an hour.
Next is the Adriamycin (Doxorubicin), which is red and comes in two very large syringes. It is slow pushed in by a nurse over the course of about 20 minutes while saline is simultaniously dripped in from a bag. They have to do it slow and dilute it because it’s very irritating on the veins.
Then they hook up the Cytoxan. It slow drips from a bag for a little over an hour, again with the slowness because it’s harsh on the veins.
The last thing they do is flush it all in with more saline, and then use a syringe to inject some blood thinner so the port doesn’t clog up, then more saline to flush that in.
By the time I left I was exhausted and within two hours of being home I crawled into bed and stayed there for the rest of the day and night. There is no way to describe what my body was experiencing other than to say that it felt like I’d had poison slow dripped into my veins over the course of a couple of hours. It was a kind of masochistic slow torture that went against my every instinct.
Friday, November 2, 2007
Things for Reasons
It would seem to me that the very nature of retrospect is, in all of its profundity, to be a bitch. I mean I suppose if I were to go back in life I wouldn’t change anything, fearing the upset of my own nature, but I must admit that I would be tempted.
Take, for instance, that time with the Tic-Tac when I was nine and my little sister was five and a half: We both loved Tic-Tacs, especially orange Tic-Tacs, and every now and then my mother would give in to our pleas in the check out lane at the grocery store and buy us a container of orange Tic-Tacs. Well that night Carrie went to mom to ask for a Tic-Tac for each of us. A few minutes later she comes back and hands me this teeny tiny little piece of the Tic-Tac. The piece is so small that if it were accidentally consumed it would trigger your senses to crave an orange Tic-Tac, although you wouldn’t realize that you had in fact just the moment before swallowed a fragment of one. Anyway, so she hands me this thing, and I take the little shard from her, sneer at the fleck on my finger, stomp angrily over to the trash can and make an exaggerated point of lifting the lid off, throwing the fleck into the trash and thrusting the lid back on while exclaiming, “What am I supposed to do with that, cough on it?” Carrie looks disappointed and uncertain of how to react. My mother, sitting at the kitchen table through the whole episode, looks up from whatever it was that she was doing and demands that I “come here right now.” So I do, still angry, and she explains the situation to me. Apparently there was only one Tic-Tac left in the container, and Carrie, in all of her caring and thoughtfulness went to my mom and asked her to cut the Tic-Tac in half, to which my mother said no because it was too small and that she could just go ahead and eat it. Well this did not bode well with my sweet little sister, so she took the liberty of biting it in half to the best of her ability, to which I responded in the most ungrateful manner I had ever or have since responded to any situation. I immediately wanted the chance to do it over again, to take back my insult. How could I have possibly treated her with such utter callousness and disrespect when she was treating me with such warmth and sincerity?
The guilt I felt when my mother told me what my sister had done burned the scene so deeply into my memory that I still feel bad about it to this day. As a matter of fact, I feel the need to call her right now and tell her what a wonderful sister she is and how grateful I am to have her in my life.
Carrie doesn't remember; I, on the other hand, have never been able to forget it or forgive myself for behaving so poorly. But it was one of those pivotal moments in childhood that forms how you are as an adult, and to change how the scene played out would have ultimately changed my outcome as an individual, and I’m pretty sure I’m an ok kind of person at this point.
So yeah, retrospect. It’s made me wonder, “What if?” at least seven hundred sixty thousand fifty nine point five times. At least. But then, on the same token, I always wonder how I would be now if things hadn’t played out like they did, and I find myself feeling incredibly happy about life in general.
But this feels somehow different, and I find myself wondering “What if?” and wishing I could go back and change my course of action. I know that in essence it’s exactly the same as anything else that anyone would ask “What if?” about – it’s the same as the incident with the Tic-Tacs, the same as that time Mike and I moved to Austin and the same as that night Rachel and I were hiding from on the roof at Medima’s and the Blue Heron flew over our heads – but, regardless of it’s underlying similarity, it still feels different.
I often wonder how much sooner I would have caught it if I’d done regular checks. Would I have found it before it was invasive? What about if I’d gone ahead and gotten a scan while I was still in England? Would that have made me take action sooner when I got back to the US? Or would the English doctors have treated it as equally unimportant as the Health Department doctors? What about if I’d listened to my own damn instinct and demanded that someone help me out? Why did I tell myself to shut up and stop being silly? And why didn’t they give me the ultrasound report in the first place? That would have caught my attention and made me run to a surgeon for a biopsy. But they didn’t, and instead I took my sweet time, because why should I have been worried when they seemed so unconcerned about it?
I could “What if?” all night. I won’t, though, because that kind of speculation is frivolous now, isn’t it?
I suppose I could stomp, yell, complain, cry and be angry, too, although I think that’s hardly useful for anything, not to mention I don’t feel like it. But I’m fine – really I am. And that’s what I tell people, although they don’t seem to entirely believe me.
I’m ok, though, I think. At least for now.
But what about when I start pulling chunks of my own hair out? What about when I feel sick to my stomach for no apparent reason? What about when I just can’t do it because I’m too tired? What about when those wonderfully familiar tastes and smells turn foreign and putrid? Then what will I say when they ask, “How are you feeling?” How will I be then?
What is this going to make of me?
Take, for instance, that time with the Tic-Tac when I was nine and my little sister was five and a half: We both loved Tic-Tacs, especially orange Tic-Tacs, and every now and then my mother would give in to our pleas in the check out lane at the grocery store and buy us a container of orange Tic-Tacs. Well that night Carrie went to mom to ask for a Tic-Tac for each of us. A few minutes later she comes back and hands me this teeny tiny little piece of the Tic-Tac. The piece is so small that if it were accidentally consumed it would trigger your senses to crave an orange Tic-Tac, although you wouldn’t realize that you had in fact just the moment before swallowed a fragment of one. Anyway, so she hands me this thing, and I take the little shard from her, sneer at the fleck on my finger, stomp angrily over to the trash can and make an exaggerated point of lifting the lid off, throwing the fleck into the trash and thrusting the lid back on while exclaiming, “What am I supposed to do with that, cough on it?” Carrie looks disappointed and uncertain of how to react. My mother, sitting at the kitchen table through the whole episode, looks up from whatever it was that she was doing and demands that I “come here right now.” So I do, still angry, and she explains the situation to me. Apparently there was only one Tic-Tac left in the container, and Carrie, in all of her caring and thoughtfulness went to my mom and asked her to cut the Tic-Tac in half, to which my mother said no because it was too small and that she could just go ahead and eat it. Well this did not bode well with my sweet little sister, so she took the liberty of biting it in half to the best of her ability, to which I responded in the most ungrateful manner I had ever or have since responded to any situation. I immediately wanted the chance to do it over again, to take back my insult. How could I have possibly treated her with such utter callousness and disrespect when she was treating me with such warmth and sincerity?
The guilt I felt when my mother told me what my sister had done burned the scene so deeply into my memory that I still feel bad about it to this day. As a matter of fact, I feel the need to call her right now and tell her what a wonderful sister she is and how grateful I am to have her in my life.
Carrie doesn't remember; I, on the other hand, have never been able to forget it or forgive myself for behaving so poorly. But it was one of those pivotal moments in childhood that forms how you are as an adult, and to change how the scene played out would have ultimately changed my outcome as an individual, and I’m pretty sure I’m an ok kind of person at this point.
So yeah, retrospect. It’s made me wonder, “What if?” at least seven hundred sixty thousand fifty nine point five times. At least. But then, on the same token, I always wonder how I would be now if things hadn’t played out like they did, and I find myself feeling incredibly happy about life in general.
But this feels somehow different, and I find myself wondering “What if?” and wishing I could go back and change my course of action. I know that in essence it’s exactly the same as anything else that anyone would ask “What if?” about – it’s the same as the incident with the Tic-Tacs, the same as that time Mike and I moved to Austin and the same as that night Rachel and I were hiding from on the roof at Medima’s and the Blue Heron flew over our heads – but, regardless of it’s underlying similarity, it still feels different.
I often wonder how much sooner I would have caught it if I’d done regular checks. Would I have found it before it was invasive? What about if I’d gone ahead and gotten a scan while I was still in England? Would that have made me take action sooner when I got back to the US? Or would the English doctors have treated it as equally unimportant as the Health Department doctors? What about if I’d listened to my own damn instinct and demanded that someone help me out? Why did I tell myself to shut up and stop being silly? And why didn’t they give me the ultrasound report in the first place? That would have caught my attention and made me run to a surgeon for a biopsy. But they didn’t, and instead I took my sweet time, because why should I have been worried when they seemed so unconcerned about it?
I could “What if?” all night. I won’t, though, because that kind of speculation is frivolous now, isn’t it?
I suppose I could stomp, yell, complain, cry and be angry, too, although I think that’s hardly useful for anything, not to mention I don’t feel like it. But I’m fine – really I am. And that’s what I tell people, although they don’t seem to entirely believe me.
I’m ok, though, I think. At least for now.
But what about when I start pulling chunks of my own hair out? What about when I feel sick to my stomach for no apparent reason? What about when I just can’t do it because I’m too tired? What about when those wonderfully familiar tastes and smells turn foreign and putrid? Then what will I say when they ask, “How are you feeling?” How will I be then?
What is this going to make of me?
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