I've been staying very busy prepping lesson plans lately. Yep, I'm teaching... another teacher's classes, but I'm grateful for it either way. I sort of forgot how much work it takes to get all the content fresh in my own mind, then figure out what I want/need the kids to learn, then set up a plan for how to get them there. In some ways I make it harder than myself than I really need to. I could spend a lot less time planning if I were content to find videos for them to watch, assigning textbook readings and letting them answer those crap questions at the end of each chapter. I'll be honest, the students will do a little bit of that stuff, but I'm also trying to create activities and build in ways for them to get out of their seats, use their brains for something beyond rote memorization. Doing that for three classes, five days a week is a lot of work. It's good work, and I'm glad to be doing it. This is the sort of job in which I could lose myself, giving all of my free moments and then some over to grading, coming up with ideas for projects and activities, tweaking lectures, looking again and again for the perfect reading. Yesterday I promised Jason that I wouldn't do that this time. I promised that I would set limits on what I will give to this job because the degree to which I have pushed myself in the past has meant giving up a lot: time with Jason, friends, and family; sleep; healthy eating habits; a little bit of sanity.
I like to work. I like to be busy. For months now I've been feeling like I've been doing so little, spinning my professional wheels and contributing minimally to household finances, so teaching -even if they're not my classes for good- feels like a godsend. But, owing to the thankless nature of the profession in general, and the substitute profession in particular, it comes with a few conditions I ought to remember. 1. I'm not getting paid to build these classes from the ground up (even if that's what needs to be done), I am getting paid to fill in for the person who gets paid to build the classes. It's just bad timing that the new semester is starting and she didn't have them all planned out for me. 2. It's ok if everything isn't perfect. 3. This isn't a permanent job. I need a recommendation and to be on someone's radar and I can do that by doing the job very well. 4. I don't need to break myself to do the job very well. 5. I have to be concerned with taking care of myself. I am still healing and even if I mostly feel fine, missing out on rest or creating undue stress are things that will make healing harder.
Everyone keeps telling me that they're sure this will be the thing that leads me to full-time teaching work. I hope they're right. I could use something productive to pour my energy into, and I've been looking for a job for a good long while now. The whole job search process is mighty discouraging.
The day after tomorrow I will have my last chemotherapy treatment. I wonder how that will feel. Right now I'm feeling a lazy sort of anticipation, I'm glad I'm so close to being done, but I also feel kind of ... blank.
Monday, January 28, 2013
Saturday, January 19, 2013
endings
I keep having the strange urge to make an appointment to get a hair cut, as if I had hair to cut. Part of me thinks it would be hilarious to make an appointment only to show up bald, just to see how the stylist would react. What does one say to an apparently delusional chemo patient come to you for services that are impossible to render? I'm curious. I found myself tempted to wander over to the hair dye section of the grocery store, though I can't remember the last time I felt compelled to dye my hair when it was all here. I think I'm just craving the habits of my old body.
Two days ago I had my second-to-last chemo treatment. It felt good, feels good. When I think about how very near I am to the end of this part of the process, I get butterflies. I want to show up to that last appointment dressed to the nines with champagne and noise-makers, confetti and music. I want to run out of there to the triumphant cheers of nurses and other patients, not because I think I deserve it, but because it's the first thing that really feels worth celebrating in about eight months. Ok, the second thing, the first being the removal of the cancer. It's just all been so fucking hard, from the change in my diagnosis to the failed reconstruction to the huge egg harvest that turned out three embryos, precious and heavy with the pressure of one chance and all my hope.
Two weeks from today I will be facing the rest of my life wherein the management of my cancer care is more about lifestyle than regular doctor visits and abrasive medications. The energy these meds have sapped will slowly return. My hair will grow back. I'll have a reason to use my razor again. My bottle of shampoo that has sat, virtually untouched, in the shower will be put to use. The aches that now arise in my bones will dissipate. The pain in my nail beds, the tingling and numbness in my fingertips will (hopefully, probably) subside. I will be able to avoid the smells of the infusion room. Lightly spiced food will no longer set my tongue aflame. I'll have my port removed and the skin on my chest will lay flat once again, rather than stretching and bubbling over this plastic implant.
It's a funny feeling, this coming to the end. Because it feels so momentus, like such a big event, and in so many ways it isn't an ending at all. The cancer center gives patients chemo completion diplomas. On January 30th, I will spend hours in the infusion room and on my way out the door, they'll hand me a sheet of printer paper certifying that I made it. That I stuck it out and got to the end.
But it won't be the end, because they'll also hand me a prescription for Tamoxifen and schedule a follow-up appointment for an mri and a physical exam to monitor for recurrence. And I'll take that Tamoxifen for five years. And I'll go home and schedule appointments with plastic surgeons to find the right doctor to do my reconstruction. And hopefully by mid-summer the reconstruction will be done. Another ending on the horizon.
And I'll take my Tamoxifen every day. And I'll eat well and use the elliptical more. And I'll try even harder to find ways to make myself feel like I'm living instead of waiting.
Because right now, and for the forseeable future, I feel like I'm waiting for the actual end of all of this but it isn't coming for a long, long time, if ever.
I'm having a hard time giving myself over to my future which is riddled with much waiting and all sorts of terrifying things I can't know, and the prospects are scarier now than they were a year ago. A year ago we were thinking babies and vacation and law school and job prospects. Then our life was thrown into upheaval and all those things were scattered to the edges of our field of vision. Now, as the dust begins to settle and the things we wanted have started to move closer to our grasp, it's babies on which I'm fixated. Because that's the thing we can't have (and the thing everyone around us seems to be having), and because for some reason I have it in my head that having a baby is the one thing that will make me feel like I have a normal life again (which is a lot of pressure for a new person and might be precisely why it's best we can't have a baby right now). All sorts of things hold that hope at arm's length - I have five years of hormone therapy to do during which time I am not allowed to get pregnant*; having had cancer renders me an inelligible candidate for many adoption agencies for at least a few years; medical bills and much time off of work has left us financially less stable than we once were, and adoption is expensive. And time-consuming. The whole scenario gets me thinking about myself as defective and that occasionally spirals into guilt about keeping Jason from being able to have the life he wanted. I was only mostly joking when I recently told him that he could easily leave me, marry someone else, and have a kid all well before he and I could even start trying.
Now I'm watching my dear friend's incredible daughter grow and it's a wonderful thing to see. And it fills a selfish part of me with envy. One of the best couples I know is expecting their first child and I'm wildly happy for them. Seeing one of my oldest friends grow an exciting little life in her lovely, round belly is kind of magical. And I want it for myself. I feel guilty; it is a selfish set of emotions that I struggle to control. I have another pregnant friends and I keep meaning to wish them well, check in, and then not doing it because I'm scared of my own emotions, and I'll be honest - I'm jealous of all these wonderful women with their cancer-free bodies, despite my better intentions and my happiness for them. I want to lavish them with gifts and hear about their pregnancies with a desperation that can only be inhabited by those who are unable to participate. I am the mama club outsider, too eager and not allowed to convert to their ranks. What sort of person am I?
This is where I get trapped in all the things I can't know, and how to make myself live this life now instead of waiting around for the things I wanted. I can't know for at least five years whether or not the chemo has made me infertile. That's a big question to just leave hanging around out there. I can't ever know if pregnancy and the associated hormones will flip a tiny cellular switch, making little meals for hungry cancer cells. I can't know whether or not my body even contains those cells. The ground beneath my feet is unsteady. I hate not knowing. I am that terribly nosy, obnoxious conversationalist pestering others to fill me in on what I've missed, unwilling to let Jason keep even the tiniest secret, seeking more details constantly. And here my very own body is full of huge, important secrets and I've the rest of my life (how long is that?) to find out what they are.
Maybe my problem is that I keep thinking that at some point this cancer voyage will come to an end. But it won't. It will progress in fits and starts but it won't end. The end of chemo is the beginning of hormone therapy. The end of hormone therapy is the beginning of trying to make a family, which is rife with its own exciting and frightening potentialities. And through all of this is the continuation of my life, taking care of myself and searching for ways to accept what I don't know, to accept that there isn't really an end to any of this, but that it will get better, to believe that the things I want like a baby and to be able to work full-time without medically necessary interruptions and to be financially stable enough to be elligible adoptive parents and to stop thinking of my life as something that exists between doctors' appointments and treatments are all out there for me. Because all those things are out there... I think.
I suspect that in a couple of weeks these things will feel a little more real, not quite so far out of reach, and over the next few months normality will come back to me in small, modified pieces. And I will relish each morsel.
*Technically, I could interrupt my Tamoxifen regimen to have a baby, but doctors do not advise doing so and they have little to no data on how this impacts the effectiveness of the drug. Also, because it is ill-advised to stop the therapy, they recommend restarting immediately after giving birth which cuts out the possibility of breast feeding. I think if I were to stop taking the drug to try to get pregnant, I'd spend a lot of time scared about how that might impact the rest of my life and as much as I want to shorten the wait, I am more afraid to shorten my life.
Two days ago I had my second-to-last chemo treatment. It felt good, feels good. When I think about how very near I am to the end of this part of the process, I get butterflies. I want to show up to that last appointment dressed to the nines with champagne and noise-makers, confetti and music. I want to run out of there to the triumphant cheers of nurses and other patients, not because I think I deserve it, but because it's the first thing that really feels worth celebrating in about eight months. Ok, the second thing, the first being the removal of the cancer. It's just all been so fucking hard, from the change in my diagnosis to the failed reconstruction to the huge egg harvest that turned out three embryos, precious and heavy with the pressure of one chance and all my hope.
Two weeks from today I will be facing the rest of my life wherein the management of my cancer care is more about lifestyle than regular doctor visits and abrasive medications. The energy these meds have sapped will slowly return. My hair will grow back. I'll have a reason to use my razor again. My bottle of shampoo that has sat, virtually untouched, in the shower will be put to use. The aches that now arise in my bones will dissipate. The pain in my nail beds, the tingling and numbness in my fingertips will (hopefully, probably) subside. I will be able to avoid the smells of the infusion room. Lightly spiced food will no longer set my tongue aflame. I'll have my port removed and the skin on my chest will lay flat once again, rather than stretching and bubbling over this plastic implant.
It's a funny feeling, this coming to the end. Because it feels so momentus, like such a big event, and in so many ways it isn't an ending at all. The cancer center gives patients chemo completion diplomas. On January 30th, I will spend hours in the infusion room and on my way out the door, they'll hand me a sheet of printer paper certifying that I made it. That I stuck it out and got to the end.
But it won't be the end, because they'll also hand me a prescription for Tamoxifen and schedule a follow-up appointment for an mri and a physical exam to monitor for recurrence. And I'll take that Tamoxifen for five years. And I'll go home and schedule appointments with plastic surgeons to find the right doctor to do my reconstruction. And hopefully by mid-summer the reconstruction will be done. Another ending on the horizon.
And I'll take my Tamoxifen every day. And I'll eat well and use the elliptical more. And I'll try even harder to find ways to make myself feel like I'm living instead of waiting.
Because right now, and for the forseeable future, I feel like I'm waiting for the actual end of all of this but it isn't coming for a long, long time, if ever.
I'm having a hard time giving myself over to my future which is riddled with much waiting and all sorts of terrifying things I can't know, and the prospects are scarier now than they were a year ago. A year ago we were thinking babies and vacation and law school and job prospects. Then our life was thrown into upheaval and all those things were scattered to the edges of our field of vision. Now, as the dust begins to settle and the things we wanted have started to move closer to our grasp, it's babies on which I'm fixated. Because that's the thing we can't have (and the thing everyone around us seems to be having), and because for some reason I have it in my head that having a baby is the one thing that will make me feel like I have a normal life again (which is a lot of pressure for a new person and might be precisely why it's best we can't have a baby right now). All sorts of things hold that hope at arm's length - I have five years of hormone therapy to do during which time I am not allowed to get pregnant*; having had cancer renders me an inelligible candidate for many adoption agencies for at least a few years; medical bills and much time off of work has left us financially less stable than we once were, and adoption is expensive. And time-consuming. The whole scenario gets me thinking about myself as defective and that occasionally spirals into guilt about keeping Jason from being able to have the life he wanted. I was only mostly joking when I recently told him that he could easily leave me, marry someone else, and have a kid all well before he and I could even start trying.
Now I'm watching my dear friend's incredible daughter grow and it's a wonderful thing to see. And it fills a selfish part of me with envy. One of the best couples I know is expecting their first child and I'm wildly happy for them. Seeing one of my oldest friends grow an exciting little life in her lovely, round belly is kind of magical. And I want it for myself. I feel guilty; it is a selfish set of emotions that I struggle to control. I have another pregnant friends and I keep meaning to wish them well, check in, and then not doing it because I'm scared of my own emotions, and I'll be honest - I'm jealous of all these wonderful women with their cancer-free bodies, despite my better intentions and my happiness for them. I want to lavish them with gifts and hear about their pregnancies with a desperation that can only be inhabited by those who are unable to participate. I am the mama club outsider, too eager and not allowed to convert to their ranks. What sort of person am I?
This is where I get trapped in all the things I can't know, and how to make myself live this life now instead of waiting around for the things I wanted. I can't know for at least five years whether or not the chemo has made me infertile. That's a big question to just leave hanging around out there. I can't ever know if pregnancy and the associated hormones will flip a tiny cellular switch, making little meals for hungry cancer cells. I can't know whether or not my body even contains those cells. The ground beneath my feet is unsteady. I hate not knowing. I am that terribly nosy, obnoxious conversationalist pestering others to fill me in on what I've missed, unwilling to let Jason keep even the tiniest secret, seeking more details constantly. And here my very own body is full of huge, important secrets and I've the rest of my life (how long is that?) to find out what they are.
Maybe my problem is that I keep thinking that at some point this cancer voyage will come to an end. But it won't. It will progress in fits and starts but it won't end. The end of chemo is the beginning of hormone therapy. The end of hormone therapy is the beginning of trying to make a family, which is rife with its own exciting and frightening potentialities. And through all of this is the continuation of my life, taking care of myself and searching for ways to accept what I don't know, to accept that there isn't really an end to any of this, but that it will get better, to believe that the things I want like a baby and to be able to work full-time without medically necessary interruptions and to be financially stable enough to be elligible adoptive parents and to stop thinking of my life as something that exists between doctors' appointments and treatments are all out there for me. Because all those things are out there... I think.
I suspect that in a couple of weeks these things will feel a little more real, not quite so far out of reach, and over the next few months normality will come back to me in small, modified pieces. And I will relish each morsel.
*Technically, I could interrupt my Tamoxifen regimen to have a baby, but doctors do not advise doing so and they have little to no data on how this impacts the effectiveness of the drug. Also, because it is ill-advised to stop the therapy, they recommend restarting immediately after giving birth which cuts out the possibility of breast feeding. I think if I were to stop taking the drug to try to get pregnant, I'd spend a lot of time scared about how that might impact the rest of my life and as much as I want to shorten the wait, I am more afraid to shorten my life.
Saturday, January 5, 2013
lady parts
Here it is, the thing you all come here - or to almost any blog for that matter - in search of: very personal information about my life! Today's exciting personal information is this: I am having a period! A real-live fest of womanly bleeding, cramps, and lower-back aches! An actual accounting of the functionality of my reproductive system! I understand that this may not seem exciting to the casual observer, or maybe you're one of those folks who has just had it up to the eyeballs with women and their dang periods, but allow me to do a bit of scene-setting.
I haven't had a period, or especially normal physical functions since early October when we went through the whole in vitro process of pumping me up with hormones, harvesting and fertilizing eggs, and freezing the resultant embryos. Shortly thereafter I started chemo which made several things happen. First, it made me tired. Then it made me nauseated. Then it made my hair fall out. It made my skin dry up so that despite drinking LOTS of water, (begrudgingly) taking fewer and cooler showers, and moisturizing like a swamp-dweller transported to Death Valley, I still itch and flake. It makes my bones ache. The aching bones were just a side effect of the growth factor shots, but now are a side effect of both my current infusion drug, Taxol, and the growth factor shots. Ouch. It made my periods stop altogether. And, as if that weren't enough, it gives me hot flashes. Fucking hot flashes at 28 years old! Embarrassing and occasionally hilarious, like the time I was talking to students about travel and mentioned that I did a bit of European back-packing when suddenly a hot flash struck, making me turn BEET RED and SWEATY, which in turn made them very uneasy and very curious. Or the time I had one at a show and two generous men tried to make me feel better by asserting that they were sure they'd experienced the same thing. Sorry dudes, but you have not. I think I appreciate your effort to normalize this unusual phenomenon. Yes, I realize that men occasionally have hot flashes but, as in women, it corresponds to later-in-life changes in hormone levels and these guys were my age.
The only thing any doctors, books, or web forums said about my cycle stopping was that at my age, chances were good that it would return within the next YEAR or TWO, which left me with some serious concerns about the resiliency of my reproductive system, and pretty distressed about what these drugs are doing inside of me. It's strange how important this feels. I used an IUD for years and so had very few and very light menstrual cycles. I didn't anticipate feeling so jilted when the chemo sent me into amenorrhea, but in combination with the loss of so much else that felt normal and feminine, this absence, too, was quite glaring.
Welcome back.
I haven't had a period, or especially normal physical functions since early October when we went through the whole in vitro process of pumping me up with hormones, harvesting and fertilizing eggs, and freezing the resultant embryos. Shortly thereafter I started chemo which made several things happen. First, it made me tired. Then it made me nauseated. Then it made my hair fall out. It made my skin dry up so that despite drinking LOTS of water, (begrudgingly) taking fewer and cooler showers, and moisturizing like a swamp-dweller transported to Death Valley, I still itch and flake. It makes my bones ache. The aching bones were just a side effect of the growth factor shots, but now are a side effect of both my current infusion drug, Taxol, and the growth factor shots. Ouch. It made my periods stop altogether. And, as if that weren't enough, it gives me hot flashes. Fucking hot flashes at 28 years old! Embarrassing and occasionally hilarious, like the time I was talking to students about travel and mentioned that I did a bit of European back-packing when suddenly a hot flash struck, making me turn BEET RED and SWEATY, which in turn made them very uneasy and very curious. Or the time I had one at a show and two generous men tried to make me feel better by asserting that they were sure they'd experienced the same thing. Sorry dudes, but you have not. I think I appreciate your effort to normalize this unusual phenomenon. Yes, I realize that men occasionally have hot flashes but, as in women, it corresponds to later-in-life changes in hormone levels and these guys were my age.
The only thing any doctors, books, or web forums said about my cycle stopping was that at my age, chances were good that it would return within the next YEAR or TWO, which left me with some serious concerns about the resiliency of my reproductive system, and pretty distressed about what these drugs are doing inside of me. It's strange how important this feels. I used an IUD for years and so had very few and very light menstrual cycles. I didn't anticipate feeling so jilted when the chemo sent me into amenorrhea, but in combination with the loss of so much else that felt normal and feminine, this absence, too, was quite glaring.
Welcome back.
Sunday, December 30, 2012
holidays
Holidays are hard when you're not waffling in this weird state of mixed gratitude and frustration, when everyone is getting along and healthy and happy, when there is enough money and time to buy and make all the gifts you'd really like to give, when the weather does what it ought to do and sets the mood for the season. When any of those things are out of whack, it gets hard to find the spirit for christmas. It just didn't feel like it was ever actually going to happen, but it happened and in spite of my lack of christmas enthusiasm, it was nice to spend time with family and friends visiting from their far-flung homes. Sitting around a table last night I laughed more and harder than I have in weeks, maybe months. Thank you for that, friends.
Today I spent a substantial part of my evening looking up plastic surgeons. I am doing the slow, strange, mental work of giving myself over to the reality of my reconstructive option - an implant. Three months ago I hated the idea. Now I'm looking at surgeons' portfolios, assessing their skill, checking their credentials, and doing it all without crying or feeling sorry for myself. That's a big deal. In a way, to accept that an implant is what is available to me (given that I opt to have reconstructive surgery instead of wearing a prosthesis every day) is to accept what happened in September. I've struggled to accept that that tissue transplant failed inexplicably, as in rare cases they do. But to really take that in, to swallow it up and make it part of me, I have to acknowledge that it is unsafe, ill-advised, and unpredictable to think of reconstructing my breast with my own tissue again, which means that my plans for achieving normality post-cancer are shot to shit. It also makes my body feel unreliable which is pretty much the last thing I wanted to feel while fighting the mutation of my very own cells that could have killed me. Implants don't last that long and so will need to replaced at least once and likely more than once, which means that breast surgery is set to be a part of my life for good and I'm not crazy about that plan. So it goes.
I finish chemo on January 30th. A month after that I'll be cleared to start reconstruction which begins by having a balloon-like sack inserted under the muscle on the chest wall. Once that incision has had a month to heal, I'll go in for weekly-bi-weekly saline injections to fill up the tissue expander and stretch the breast mound which will probably take about six weeks. Once the skin and tissue have been stretched to the appropriate size, it'll be given a few weeks to settle at which point I'll go in to have the expander removed and replaced with a regular implant. From everything I've read, it seems like it could be a three to five month process just to get the implant in place, which is hopefully but not necessarily the end of the reconstructive surgery. It's a short time in the long-term, though that's sometimes hard to remember when the end looks this far away.
Tomorrow is new year's eve. I've never been so ready to say good bye to a particular year.
Today I spent a substantial part of my evening looking up plastic surgeons. I am doing the slow, strange, mental work of giving myself over to the reality of my reconstructive option - an implant. Three months ago I hated the idea. Now I'm looking at surgeons' portfolios, assessing their skill, checking their credentials, and doing it all without crying or feeling sorry for myself. That's a big deal. In a way, to accept that an implant is what is available to me (given that I opt to have reconstructive surgery instead of wearing a prosthesis every day) is to accept what happened in September. I've struggled to accept that that tissue transplant failed inexplicably, as in rare cases they do. But to really take that in, to swallow it up and make it part of me, I have to acknowledge that it is unsafe, ill-advised, and unpredictable to think of reconstructing my breast with my own tissue again, which means that my plans for achieving normality post-cancer are shot to shit. It also makes my body feel unreliable which is pretty much the last thing I wanted to feel while fighting the mutation of my very own cells that could have killed me. Implants don't last that long and so will need to replaced at least once and likely more than once, which means that breast surgery is set to be a part of my life for good and I'm not crazy about that plan. So it goes.
I finish chemo on January 30th. A month after that I'll be cleared to start reconstruction which begins by having a balloon-like sack inserted under the muscle on the chest wall. Once that incision has had a month to heal, I'll go in for weekly-bi-weekly saline injections to fill up the tissue expander and stretch the breast mound which will probably take about six weeks. Once the skin and tissue have been stretched to the appropriate size, it'll be given a few weeks to settle at which point I'll go in to have the expander removed and replaced with a regular implant. From everything I've read, it seems like it could be a three to five month process just to get the implant in place, which is hopefully but not necessarily the end of the reconstructive surgery. It's a short time in the long-term, though that's sometimes hard to remember when the end looks this far away.
Tomorrow is new year's eve. I've never been so ready to say good bye to a particular year.
Saturday, December 15, 2012
the hard part
I apologize to anyone who reads this, or hopes to read it, with any sort of regularity. As I've settled in to the routinized, slow portion of the cancer ordeal, I find myself having less to say about it. Scratch that. That's not accurate; I've got plenty to say and all sorts of things going on in my head re: cancer, but it's more difficult to process. Lacking events to report on means that my writing needs to draw almost entirely from what I'm thinking and feeling and there are a few issues with that. One, it's harder. Way harder. Two, it's intimate. There are some things I can't find my way through and I'm not sure all of you, or any of you, can come with on that journey. Three, it's more complicated which means the writing and sorting out is more demanding and most days it feels daunting to think of sitting down to write when it takes so much out of me just to get through a full day of work, or an empty day that begs filling with anything but time alone with my thoughts. Finally, it's repetitive. If my thoughts feel repetitive to myself, they'll surely be so to you. I think going over and over things in my own mind is part of the process, but I don't know that you all want to read variations on a single entry over and over. That said, this is sort of where my head's been of late...
The lump in my throat is persistent, an emotional weight and a distinct physical presence - a pill that lodged itself in my esophagus a week and a half ago and will not budge. It fuels the ever-present nausea, a mild irritation rising each time I swallow, the rippling of my esophagus pushing against the lump. There is a stomach-churning medicinal smell, acid, metallic, chemical, that arises unannounced -a rush to the olfactory system, swift and profuse- triggered by science classrooms, tomatoes, soaps and surface cleaners, the clean dish-soapy smell of recently washed glasses, and occasional fruits. It catches in my nose and throat, pungent, heavy, and hard to place. The odor comes from the infusion room, some combination of the port flush fluid and hospital grade cleaning products. I wish it would stay there. Jason cannot smell it even as we sit in the room together while I get my treatment. During our first visit, I could not smell it either.
My appetite returned with a vengeance a few nights ago as I readied myself for bed, sweet relief after having consumed roughly 1,200 calories over the course of three preceding days. Exhausting, sick-feeling days when my stomach both craved and rejected the nourishment the rest of me needed to will myself off of the sofa. I threw up for the first time. Lucky, I know. I really do know how very lucky I am, but at some point the source of gratitude starts to run dry. Whether or not this could be worse, this is my present. my life. and it kind of fucking sucks. It's taxing and depressing even to be a fortunate chemo patient.
As I come to the end of this set of medications and prepare to switch to to one single medication that promises to be easier on my system, I find I am emotionally conflicted. At once I am aware that I ought to feel nothing but relief - the situation which has not even been that bad is about to vastly improve (save the disappointing, if minor, side effect of losing my eyebrows and eyelashes), but what I actually feel is a sort of desperation. that I might crack at any moment. that in the face of the anti-climactic shift beyond the chemotherapy halfway point which should be a celebratory moment, all I really want to do is hide in a puddle of blankets and weep. In absence of the sense that I am or could be dying right now it is easy to lose track of why this is happening, why I chose it. Fear of death is too far off to inform my emotional reaction to chemo. Because I'm not dying now. So I'm not afraid of that. The fear that paralyzes me is one that no one can answer to - that this will come back and kill me in a five years, in a decade, at some sad mid-life time. Maybe this medication is stopping that from happening. Maybe it isn't. My sense of purpose wanes. Why these days sick and lonely, this burden to my family and friends, this financial stress? It is difficult to picture the future for which I am fighting when I feel so thoroughly wedged into an overwhelming, painful, present. Harder still when it's the things that future could hold that both give me hope and scare me senseless, so I try not to think much about it.
I can't figure out which is better: to feel this, the middling frustration and mental brittleness, the vague purpose and pervasive loss, or to perpetually remind myself that otherwise I might die from this disease. Which fear is greater? more damaging? more productive? more healing? more real? I wish I knew.
The lump in my throat is persistent, an emotional weight and a distinct physical presence - a pill that lodged itself in my esophagus a week and a half ago and will not budge. It fuels the ever-present nausea, a mild irritation rising each time I swallow, the rippling of my esophagus pushing against the lump. There is a stomach-churning medicinal smell, acid, metallic, chemical, that arises unannounced -a rush to the olfactory system, swift and profuse- triggered by science classrooms, tomatoes, soaps and surface cleaners, the clean dish-soapy smell of recently washed glasses, and occasional fruits. It catches in my nose and throat, pungent, heavy, and hard to place. The odor comes from the infusion room, some combination of the port flush fluid and hospital grade cleaning products. I wish it would stay there. Jason cannot smell it even as we sit in the room together while I get my treatment. During our first visit, I could not smell it either.
My appetite returned with a vengeance a few nights ago as I readied myself for bed, sweet relief after having consumed roughly 1,200 calories over the course of three preceding days. Exhausting, sick-feeling days when my stomach both craved and rejected the nourishment the rest of me needed to will myself off of the sofa. I threw up for the first time. Lucky, I know. I really do know how very lucky I am, but at some point the source of gratitude starts to run dry. Whether or not this could be worse, this is my present. my life. and it kind of fucking sucks. It's taxing and depressing even to be a fortunate chemo patient.
As I come to the end of this set of medications and prepare to switch to to one single medication that promises to be easier on my system, I find I am emotionally conflicted. At once I am aware that I ought to feel nothing but relief - the situation which has not even been that bad is about to vastly improve (save the disappointing, if minor, side effect of losing my eyebrows and eyelashes), but what I actually feel is a sort of desperation. that I might crack at any moment. that in the face of the anti-climactic shift beyond the chemotherapy halfway point which should be a celebratory moment, all I really want to do is hide in a puddle of blankets and weep. In absence of the sense that I am or could be dying right now it is easy to lose track of why this is happening, why I chose it. Fear of death is too far off to inform my emotional reaction to chemo. Because I'm not dying now. So I'm not afraid of that. The fear that paralyzes me is one that no one can answer to - that this will come back and kill me in a five years, in a decade, at some sad mid-life time. Maybe this medication is stopping that from happening. Maybe it isn't. My sense of purpose wanes. Why these days sick and lonely, this burden to my family and friends, this financial stress? It is difficult to picture the future for which I am fighting when I feel so thoroughly wedged into an overwhelming, painful, present. Harder still when it's the things that future could hold that both give me hope and scare me senseless, so I try not to think much about it.
I can't figure out which is better: to feel this, the middling frustration and mental brittleness, the vague purpose and pervasive loss, or to perpetually remind myself that otherwise I might die from this disease. Which fear is greater? more damaging? more productive? more healing? more real? I wish I knew.
Monday, November 26, 2012
sleep calls
There's something infantilizing about feeling this tired, and something reminiscent of pregnancy to feeling this smell-sensitive and nauseated. It seems I either spoke too soon or posted too late about the duration of the side effects - they're sticking around. The fatigue held lightly to my schedule in between the last treatments, but its grip is intensified this time around. Sunday I managed to rouse myself for a trip to the grocery store, returned to wash and chop fruits and vegetables, then made some muffins. All told, three hours of doing simple activities and it sent me graciously to the sofa for a two hour nap. I don't like sleeping so much. I have the sense of not being able to keep up and I suspect I felt the same way as a child struggling to stay up as late as the grown-ups. I am also reminded of my father, who spent family visits snoring in the living room, who slept through our plans over and over, who seemed to sleep through much of life in the first two-thirds of my life. I realize this is a temporary state of affairs and that I haven't slipped into a anti-depressant-addled free for all of unconsciousness, that this is a need my body has right now. But it feels so strange, as if my body is demanding that I drop out of my social life. And it's lonely, being tired like this.
I also feel a little spacey which is why this post is ending abruptly. It felt like there was something i wanted to say when I started writing...
I also feel a little spacey which is why this post is ending abruptly. It felt like there was something i wanted to say when I started writing...
Friday, November 23, 2012
patterns
This morning I woke up at 5:30, some combination of fierce thirst, and urgent need to pee, and powerful wind whipping around the house, knocking at the windows and shoving the doors. I often wake at least once in the night to guzzle a large glass of water and use the bathroom -things a nurse recently told me are healthy habits, all that drinking and flushing prevents this toxic medication from taking up in my kidneys for too long, corroding them. I managed to get back to sleep after entertaining notions of drinking tea and watching a pleasant sunrise, which turned out to be just a brightening of the dark gray sky, the sun rising in some indistinct place behind all these clouds. It is a gloomy morning.
Despite what my long absence from the blog may indicate, chemo isn't so bad. It follows a pattern:
Day 1 (Treatment day): fatigue, mild nausea
Day 2: less fatigue and nausea than day 1
Days 3 & 4: extreme fatigue, persistent but pretty mild nausea
Day 5: mostly normal
Today is day 4 in this most recent cycle, and true to the pattern I went to bed at 8:30 last night after having taken an afternoon nap and slept in until 10am. Past day four the fatigue sticks around in a gentle way, urging me to bed early, sapping energy I might have for Christmas projects, shopping, or sewing. Still, I manage to keep my routines and obligations. I work on my normal days, concealing my baldness beneath a wig that makes me feel nervous, like I might be found out at any moment for this hair charade.
Monday evenings I volunteer with the local youth advisory council, though it seems almost dishonest to call myself a volunteer. I do so little, and I suspect I am the one who gets the most out of my participation. I hope in the very least that I'm offering them something in our discussions. The kids are in high school, tactful, timid, and supportive in their rare inquiries about my cancer. Except for one student. He has autism and I appreciate his interest the most. Without fail when I see him, we have the same brief conversation that makes some of the other kids uneasy, their manners dictating that one ought not discuss "it" too loudly or casually, despite my openness.
He asks LOUDLY, in a jubilant manner that makes me smile every time, "So, Sara, how is your battle with breast cancer going?"
"Well, _______, I think I'm winning,"
"Yessss! That's great news!"
Then, as if on cue, the other students smile, too. Because it is great news.
Despite what my long absence from the blog may indicate, chemo isn't so bad. It follows a pattern:
Day 1 (Treatment day): fatigue, mild nausea
Day 2: less fatigue and nausea than day 1
Days 3 & 4: extreme fatigue, persistent but pretty mild nausea
Day 5: mostly normal
Today is day 4 in this most recent cycle, and true to the pattern I went to bed at 8:30 last night after having taken an afternoon nap and slept in until 10am. Past day four the fatigue sticks around in a gentle way, urging me to bed early, sapping energy I might have for Christmas projects, shopping, or sewing. Still, I manage to keep my routines and obligations. I work on my normal days, concealing my baldness beneath a wig that makes me feel nervous, like I might be found out at any moment for this hair charade.
Monday evenings I volunteer with the local youth advisory council, though it seems almost dishonest to call myself a volunteer. I do so little, and I suspect I am the one who gets the most out of my participation. I hope in the very least that I'm offering them something in our discussions. The kids are in high school, tactful, timid, and supportive in their rare inquiries about my cancer. Except for one student. He has autism and I appreciate his interest the most. Without fail when I see him, we have the same brief conversation that makes some of the other kids uneasy, their manners dictating that one ought not discuss "it" too loudly or casually, despite my openness.
He asks LOUDLY, in a jubilant manner that makes me smile every time, "So, Sara, how is your battle with breast cancer going?"
"Well, _______, I think I'm winning,"
"Yessss! That's great news!"
Then, as if on cue, the other students smile, too. Because it is great news.
Subscribe to:
Posts (Atom)