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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.
On Friday, May 2nd at approximately 3:00 in the afternoon, I sat in the cancer center typing merrily away to Paul on my computer while upwards of $6000 worth of Herceptin dripped slowly into my body. The usual suspects were about: the nurses doing their nurse thing, the friendly older man with the terrible cough that always seems incredibly busy while he’s getting his chemo, the frail old man that always smiles at me but has never spoken to me, the old man with the walker and the oxygen that always talks to me but I can barely understand what he’s saying, the old Spanish looking woman who I’m almost certain never understands a thing the nurses say to her, and Mr. Bacon.
Mr. Bacon is probably in his 50’s. He’s trim and fit with silvery white hair, a sparkle in his eyes and a smile that could make even the meanest sour pusses smile. He’s the kind of guy that you can’t help but enjoy being around; the kind of guy that makes going for chemo entertaining. He is very witty, genuine and has a wonderful sense of humor that he uses to engage in playful banter with the nurses and make people laugh. He’s the kind of person that you want to be like when you’re his age and hope that your kids will turn out like. All in all, he’s a pretty cool guy.
Everything was going as it usually goes — nothing surprising or out of the ordinary had happened or seemed pending, which is favorable when you’re getting cancer treatment — but lurking under the merry facade of Mr. Bacon’s cool, calm and collected demeanor was an unhappy truth waiting to be uncovered.
When the nurses unhooked Mr. Bacon from his IVs, he got up as usual and joked as he walked across the room. But, I realized, he wasn’t leaving yet. He was going in to see his doctor, and was going to come back to the chemo room before he left. I didn’t think much of this deviation of routine and continued typing away on my computer, although it should have been my first clue for what that terrible May day had in store.
Ten or fifteen minutes later I was made aware of Mr. Bacon’s return by the nurses’ eager questioning of, “How did it go?” from across the room. My chair was in a position that put Mr. Bacon back and left of me, so I couldn’t see him without turning around, but when I saw the one nurse’s face drop, it was all I could do to stay in my chair. When I turned around, Mr. Bacon was just shaking his head, not saying a word, and four of the nurses were gravitating toward him. The one nurse said in disbelief, quite loudly, “No! You’re kidding!” I still didn’t know what was going on, what had happened, just that it couldn’t be good. Finally, Mr. Bacon said, “Nope. Not kidding.” By this point the nurses were close to him and they were speaking quietly so that it was difficult for me to hear what they were saying, but then, clear as day I heard Mr. Bacon say, “I won’t see Christmas. I won’t see Christmas,” and it was all I could do not to cry.
He was upset, of course, and I could hear it in his voice, but he spoke matter of factly and remained as calm and collected as ever.
And then he laughed.
From that point on his regular tone returned and he joked and laughed almost like normal, except this time it was about how he was going to die and that there was nothing he could do about it. He wouldn’t be coming back for treatments anymore, since they obviously weren’t working and he had better things to be spending his time doing. I heard him say, “He said I could try radiation, but, I mean….”
I wanted so badly to jump up and give him a hug, but my inhibitions were too great and by the time I plucked up the courage to do it I would have had to have picked up my chemo pole and chaseed him down the hall and into the waiting room out front. Then, as soon as it was too late, I deeply regretted not getting my ass up, interrupting their conversation and giving the man a hug.
After he was gone I asked the nurse what happened. She told me that Mr. Bacon had complained about headaches in his prechemo check up that morning and the Dr. sent him over for a PET/CT scan of the head immediately (they have their own PET/CT unit in the building next door). The radiologist brought the results to Mr. Bacon’s Dr. right away (it usually takes a couple of days), and after chemo Mr. Bacon went to talk to him about it.
As it turns out, Mr. Bacon’s cancer spread to his brain, and once it’s in there, it is near impossible to get rid of. Obviously that meant that his chemotherapy was ineffective, leaving him only with the option of radiation. The effectiveness of that treatment at the stage his cancer was at would be incredibly limited, but the effects of radiation of the brain on Mr. Bacon would have been horrible, most likely leaving him very sick and partially bed ridden for the remainder of his life.
Mr. Bacon didn’t want that.
I asked the nurses if I brought them a card for Mr. Bacon if they would address it for me and send it to him (they clearly wouldn’t have been able to give me his address). They said yes, so that night when I went to the Relay for Life at Lecanto High School, I dedicated a luminaria to Mr. Bacon in his honor and took a picture of it and the word “HOPE” spelled out in the glowing bags on the bleachers. I made him a card with these pictures and a picture of the group of us that went that night on it and sent it to him. I hope he liked it.
Every time that I have talked to some new person about cancer since May 2nd, and that person tells me that I’ll surely beat it because I have “the right attitude,” I want to tell them all about Mr. Bacon and how he has “the right attitude” and isn’t supposed to die from cancer — that he is proof that cancer does not care about its host’s attitude towards it. But I have only done this twice, because it seems that telling people a story like that when they’re trying to be hopeful and inspirational breaks something inside them, and there are only so many times that I can bear being the reason for that terrible, desperate look in someone else’s eyes.
But everyone I speak to on a regular basis knows about Mr. Bacon, and now so do you.
(Note: before continuing you may want to read this post, which I wrote in a notebook back in December but only recently typed it up and posted it here. It explains “Neupogen,” “neutropena,” “neutropenic fever,” “over productive stage” and “firestorm.”)
Taxol, unlike Adriamycin and Cytoxin (AC), has caused my red blood count to be diminished and has left my white blood count at the low end of the “normal” bracket, which is 1.4-6.5, but in the bracket nonetheless… that is, until recently.
Before I started chemotherapy, my normal level was 3.6. After I started on the AC treatments it was rarely above 1.3 and had a recorded record low of 0.6. Of course, in one of my over productive stages I had a high of, if I remember correctly, 63.
For the past three weeks my white blood count has been slowly going down, and every week the nurses have commented on the possibility of giving me a Neupogen shot to prevent neutropenia. This week my white blood count was low, outside of the bracket, making me more susceptible to, well, everything.
After they “took me down” (gave me a Heprin flush, removed my tap and taped gauze to my port) I asked if I should be getting a shot because of my blood count, because while I don’t particularly care for the way the shot burns and the discomfort and internal firestorms it causes, I would really rather not get neutropenic fever and everything that entails.
HOWEVER, as it turns out, insurance policies have changed! The nurse went and asked my doctor if they should give me a shot who said, to the nurse’s surprise, that no, they were just going to hope that my system corrects itself because the insurance companies are now refusing to pay for preventative Neupogen shots and require the following criteria for a patient to get a shot: 1) The patient must have neutropenic fever and 2) the white blood gradient must be below 1.0!!!! (remember, the safe zone/normal bracket is 1.4-6.5)
How can this be a thing? Why do the insurance companies have so much power over health care? I understand the need to control the excessive administration of drugs to patients for financial purposes, but, seriously, crack down on something that is administered excessively, like antibiotics. Antibiotics have been administered to me like candy on several occasions. As a matter of fact, one of my past doctors didn’t even seem to be listening to me when I was telling her my symptoms, and, in retrospect, she should have been worried about ovarian cancer or something and have prescribed an ultrasound like the doctor I dumped her for did, NOT antibiotics.
But why prevent doctors from administering preventative medicine to cancer patients? That doesn’t even make any sense! And the doctors only have the shots administered a) to patients that need them and b) until the patient’s immune system starts functioning on its own again.
My count isn’t that bad right now (1.3), but if it were a tenth of a point or two lower, I would be concerned and really pissed off… not that I’m not angry right now, but this is more general anger whereas the other would be more selfish anger.
Basically what I’m trying to say is that insurance companies are evil and have absolutely no concern for the patients. Not that insurance company employees are all selfish, soulless, creeps, but the top dogs and policy makers that make all the money certainly appear to be.
At some point I may venture to take on the big scary monster, but I am going to need to stock up on armor first.
About a month and a half ago I was in Publix picking up some snack foods for a movie/study session with some classmates. I had forgotten to bring a hat with me, as it was a warm day and I was feeling quite comfortable and didn’t think of it. I was standing in the produce section trying to decide between the big bag of carrots and the small bag of carrots when a woman comes up next to me and seems to be similarly contemplating the carrot situation. Suddenly she said, “So did you do it on a dare,” and I thought that she must be on the phone with someone… but then she finished her sentence: “or did you just shave it because you felt like it.”
Of course at this point I knew that she was talking to me, but I delayed the looking up response by about five seconds because I was uncertain of how to respond. She picked up a bag of carrots and was looking at me when I finally ded look up. I said, “Uh, no… I have cancer and it fell out because of the treatment. It’s just starting to grow back.”
The woman’s face went kind of blank and then quickly regained composure and she began explaining to me that she was asking because her daughter is in the habit of shaving her head randomly as well as coloring her hair blue, purple and pink.
At the time my hair didn’t exactly look like it was buzzed; it looked more like it had fallen out and was just starting to debate whether or not it should come back; it was fuzzy, sparse and very, very soft. Really, it looked like more like the fuzz on a rabbit’s rump and less like human hair. But I wasn’t angry; the woman just seemed to be looking at me from a specific angle that she was familiar with and I wasn’t. So I talked to her. We laughed and joked for about 15 minutes and when we departed I hoped that our interaction wasn’t one of those incidents that she would look back on in ten years and think, “I can’t believe I did that… I’m a terrible person.” (Or anything of the sort)
………………………………………………………………..
Recently my hair has started to look more like hair and less like ducklings. I have even discovered that I have a white patch growing in the very front and center of my hair line. I’m hoping that the old age has been concentrated specifically to this area rather than being evenly distributed all around my head, that way I can look cool like Rouge from X-Men rather then like old from Life.
Unfortunately this also makes me look like “rebellious” from “the youth,” which is very much frowned upon here in good old Homosassa Florida, where they prefer “inbred” from “the rednecks” over anything representing “not conservative” (which included McCain until he became the Republican presidential candidate).
Anyway, my new hair growth includes most follicles, but not all of them yet, because the chemotherapy is still attacking my being. Because not all of my hair has chosen to come back at this time, I have chosen not to let it grow to any significant length because I prefer not to look like an under-nourished animal.
This apparently has the effect of making me look like a rebellious teenager and therefore gives people the right to stare at me without inhibition and give me disapproving looks.
Today I did not bring a hat with me when I went to Publix and I got lots of these stares and looks, starting in the parking lot and mostly from senior citizens, especially of the female variety. When I had picked out a package of chicken breasts and was walking away from the poultry bin, an older, male Publix employee said to me, “I like your hair cut.”
I couldn’t help but laugh because it just seemed so random and struck me as funny. I could tell from the confused look on the man’s face that this was an inappropriate response, so I tried to wrestle my laughter into submission while spewing out a surprisingly coherent “thank you.”
People that I am close to told me while I was bald that I “pull the look of well,” (I like to believe that they weren’t referring to the cancer look in general) and my mom has told me many times that I look really good with super short hair.
I have heard “It’s just like _______ (choose: Sinead O’Connor, J.I. Jane, Natalie Portman)” repeatedly from lots of people and my dad, brother and most of my brother’s friends have shaved their heads in tribute. I was simply happy that my head is a good shape and that my ears aren’t large.
I like not having much hair and now that I’m mostly used to it I find that when I look at pictures where I have long hair, I am surprised at how strange I look. At some point in the not too distant future the poison will finally drain completely out of me and hair will spill forth from my unpolluted scalp and redecorate this head of mine. I will then be faced with something that was more or less taken away from me on October 5th, 2007 when the surgeon found that the cancer had spread into the lymph nodes, thus making chemotherapy an important part of killing Bob: a choice regarding the aesthetics of my body. Sure, I could have chosen to leave the lump there and remain unscarred, and I did, after all, choose not to have my breast taken off all together, but those were forced choices that I wouldn’t have made had I been cancer free, so I don’t really count those.
Regarding my new hair, though, I have all kinds of choice, more now than I did pre-cancer, because it is entirely likely that I never would have chosen to cut my hair so short, never mind buzz it, were it not going to fall out in the first place. I used to be in the habit of growing it very long and then putting it in a ponytail and having it cut about chin length and donated to Locks of Love. Now, however, I’m considering keeping it very short… at least for a while.
But those looks, those unapologetic stares and presumptuous opinions you can see forming behind their eyes. I often avoid looking at people these days because sometimes I just don’t want to deal with it. Before, when I was bald and my eyelashes and eyebrows were mostly gone and I was pale and sickly and just generally looked like a cancer patient, the looks were different. There were kind eyes and apologetic smiles (for staring, I think) and there was no nastiness. As soon as it started kind of coming back, though, the looks started to change. Slowly at first, and I thought that perhaps it was in my imagination, that I was subconsciously afraid of what people thought (which is not a normal habit of mine). But then people started randomly saying stuff, usually at a Publix store (but never at the same one), and old ladies started giving me bluntly mean looks and people started staring unabashedly and with a tinge of disgust, like I’ve done something that has torn the moral fiber of our great nation and deserve to be punished by means of rude behavior from the morally superior.
On the other hand, on the days that I feel good and am most similar to my “normal” self, these stares and looks not only lack the effect of making me feel like I need to justify my hair, but they make me want to keep my hair varying lengths of short, sometimes longish to show off the white, with the express intention of making people gawk openly and make comments. Perhaps I’ll start wearing t-shirts that say stuff like, “Young people get breast cancer too. Stop staring and tell your granddaughter to check herself,” perhaps with “you morally superior bitch” in very small print at the end of the sentence.
In any case, it is interesting to be me, and I must admit that I very much enjoy it. And the oddities and downsides? Well, they just serve to make it more interesting. After all, variety is the spice of life, right?
Eight weeks ago today I sat quietly in my recliner in the Cancer Circle (as I like to call it) receiving my second Taxol/Herceptin treatment at the Cancer and Blood Disease Center. Sitting in the recliner to my left was a seemingly cheerful older woman who, I overheard, was in for her first chemotherapy treatment. I also overheard her talking to the nurse about having lived in California and that she used to be a mental health nurse.
Now, I had never been much for conversation when I was there, as I usually tended to feel quite out of sorts and not at all myself, but my first Taxol/Herceptin treatment left me feeling relatively good and I felt up for conversation, so I asked Doreen about her life. We talked for the rest of the time we were there that day, which was quite a while as we both have treatments that run for approximately 6-7 hours in total.
The following Friday I walked back to the Cancer Circle and saw that there was a seat open next to Doreen. I happily took the seat and we chatted away the time. She gave me string cheese, dried fruit and nuts, although I had nothing to offer her.
We continued on this way, although we were not always able to sit near enough to one another to really be able to chat. Doreen has made me lunch on numerous occasions and brought me citrus fruit and small citrus trees and she has made me several knitted hats to keep my bald head warm (not to mention bags full of knit hats that she made and donated to keep other’s heads warm). I have brought her strawberries and string cheese and, hopefully, as many smiles as she has brought me.
Today was Doreen’s last of her eight treatments and while I am very happy that she does not have to have any more chemo at this time, I am going to miss her. We were able to sit near each other and chat today, and even though I didn’t feel up to doing much talking for a couple of hours, the talk time we did manage to squeeze in was quite nice.
I have always dreaded going to the cancer center because that is the place I go to get shot up with drugs and poisons that make me feel disjointed, nauseated, achy, cranky, tired, out of sorts, not myself, weak, irritated and generally uncomfortable; but I found myself actually looking forward to chemo days because I got to see Doreen. We exchanged addresses, phone numbers and e-mail addresses, so hopefully we’ll be able to keep in touch, but I’m going to miss Fridays with Doreen.
My treatment tomorrow will put me at exactly 23 days away from my chemotherapy completion date. Exclamation points, smiley faces and asterisks could only work to undermine my excitement.
Tomorrow will be my 9th of the 12 weekly Taxol treatments I was prescribed, and while they have definitely been much easier to tolerate than the Adriamycin and Cytoxan treatments I had for the first two months, I am very much looking forward to purging all of these poisons from my system and starting on my path to recovery.
I am tired. Literally burned out. The temptation to skip classes this week, brush the papers and reading aside and sleep instead was almost more than I could take. My daily activities are continually hampered by my tiredness; it is similar to being perpetually drunk, except without any of the good feelings — or perhaps it’s more similar to being perpetually hung over: My head buzzes, my body aches, my vision is sometimes impaired, my speech sometimes slurs, and the abilities of walking straight, keeping my balance, listening, paying attention, remembering things and speaking coherently have never proved so difficult, nor have I ever felt so triumphant in being able to do any of these things in every day life. Of course, the longer into chemotherapy I go, the more tired I become and the more difficult these taken-for-granted abilities are.
But today I am turning around and looking at the light at the end of the tunnel, because it is not so far away now, and I am smiling, because even if the light is coming from the radiation I will be plunged into directly after exiting this damn tunnel, I’ve heard it’s not such a dark and dismal journey, and certainly not so long at a mere seven weeks.
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.
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 or 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 two 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.
The Rebellious Youth
January 10, 2008 in Body Talk, Breast Cancer Stories, Chemo-stuff, Funny Comments, Hair, Random Experiences, Reactions, breast cancer, young women cancer | 6 comments
I went to Publix the other day wearing a pink bandanna that one of the oncology nurses gave me. I bought an assortment of foods, including mussels, garlic and white wine. Naturally, I had to prove that I was old enough to purchase alcohol and when the cashier was looking at my ID she said, “I never would have guessed;” assuming that she was referring to my age I said, “Yeah, I almost always got carded before, but since my hair fell out I get carded for everything all the time, even cold medicine.” She laughed and kind of made this sad face at the same time and said, “Well, at least it’ll grow back, right?” to which I replied, “Yeah, my doctor told me it might grow back curly, but that it should go back to normal after a while, although she’s had two patients whose hair never went back.”
The woman standing in line behind me who was in her mid to late 50’s and had previously compared her fatty foods to my significantly healthier foods said, “Mine didn’t grow back curly, and the doctor told me the same thing.” I told her that I was always perfectly happy with my hair and that I would love for it to come back the same and she told me that hers came back a little thicker, but who doesn’t want thicker hair? I agreed, and then she said, “Did your hair actually fall out, or did you just shave it?” I immediately felt like I had to explain myself and told her how my hair had been to the middle of my back and I cut it short to kind of adjust to less hair and then when it started coming out by the handfuls that I buzzed it because it was getting everywhere and that I found it much less traumatic to have tiny bits of hair all over my hands than having endless handfuls of hair coming out. She kind of nodded and then announced how depressing it was to have your hair coming out by the handfuls.
I signed my credit card receipt, the cashier wished me luck in everything, said it was nice to see someone so positive and told me to keep smiling (“you have a beautiful smile,” she said) and I left the store.
While driving home, I suddenly realized that the woman in line behind me was challenging me, actually challenging me to see if my cancer was legitimate, or as serious as hers was, or something… I don’t know.
Why would she do that? Why would anyone do that?
And then I realized it was just like everything else… just like every other damn part of this whole cancer thing… it’s the same reason doctors didn’t treat it like it was serious in the first place, the same reason that the Health Department blew me off, the same reason the biopsy surgeon’s office made me wait two weeks for a consultation, the same reason that woman gave me such a dirty look back in October for saying “at least it’s a good month to get breast cancer,” the same reason I can’t get financial assistance and the same reason that no one can believe that I have breast cancer: I’m too young, and I look even younger. I don’t look old enough to buy Tylenol Cold and Flu, never mind alcohol or to have breast cancer.
But hey, guess what, this just in: Cancer doesn’t care how young I am.
Why does everyone else?