I will be taking my chemo treatments eight times, once every other week. On the day following each treatment, I have to return to the oncologist's office to get a shot of Neulasta - a medication derived from human growth factor that stimulates my bone marrow to start producing that we may quickly replenish my chemo-dwindled blood cell counts.
It aches, this cell-production stimulator. The gears within these bones are used to functioning at a slow steady pace. They find the idea of kicking into high speed work a depressingly laborious affair, and so they move begrudgingly into the drudgery that is saving my immune system. I feel like I've just pulled them out of retirement. I am grateful for this medical magic; it guarantees to make chemo more tolerable and less dangerous than the treatments given in the past. That said, my hips and my thighs, knees and arms, ache in a deep-down, unreachable way, not intense, but persistent and unmovable. Worsening the situation is the reality that yesterday I was knocked flat on my ass with fatigue and a constant, if minor, nausea. Thursday night I came home from work exhausted, managed to stay awake until about 8:30 when I was out cold until nearly 10:00 Friday morning, barring one interruption in sleep to take anti-nausea medicine. By the time Jason got home at 6:30, I estimate that I'd managed to stay awake for all of four hours. All those hours passed in bed surely didn't help my aching bones.
I have long experienced bone and muscle pain (thanks scoliosis!), that work together creating sharp pain sensations that can often be massaged and stretched to relief. This is a different feeling altogether, mostly in that it feels, appropriately, like it is so far inside of me. Moreover, it isn't connected to a muscle pain so while my temptation is rub my legs and anticipate relief, it doesn't solve my problem.
On brighter notes, I hardly feel sick to my stomach at all, and while food sounds pretty unappetizing, I did eat a dish of fruit and some toast. I think this may be the only thing I want to eat for the next month. I think I'm even up for tentative movie-going plans I made yesterday.
Hairs countdown: 11 days. The logic behind the countdown - Over 90% of patients lose about 90% of their hair between days 14-17 of treatment using the medications I am taking. The idea of waiting for that to happen, showering and coming away with clumps of hair circling the drain or stuck to my towel, waking with tufts stuck all over my pillow, it just sounds so depressing, so passive. So I'm just going to avoid all of that sad, slow hair loss by just doing it my own damn self... at the last possible minute.
Saturday, October 27, 2012
Thursday, October 25, 2012
the beginning
We put the power port to use yesterday for my first round of chemo. I didn't feel nervous or scared until the the nurse put the needle into the port on my chest which was 1. very painful, and 2. the precise moment I settled in to the fact that chemo was happening for real and I lost it for a few minutes. Not in a hiccup-y, disruptive way, but in a big hot, relatively quiet tears way. Jason is good at taking me out of these meltdown moments and even though I sort of hated him for talking the lyrics of "call me, maybe" at me, I squeezed his hand and we both laughed, a little choked up. He's good cancer company. Good company in general, but you know what I mean.
Things I learned about receiving chemotherapy:
1. Some folks who are getting their treatment are very loud, shouting everything they say and literally shouting out to nurses who are far away from them. This makes it difficult to relax in what is already a high-stress situation.
2. Other folks receiving their treatment do things like make long phone calls, leaving the automated phone system on speaker phone at top volume, which is a good way to ensure that other patients feel uncomfortable about their conversations.
3. The lights are fluorescent and too bright.
4. The thin screens that hang as dividers between patients' seating areas provide very little privacy. The seating areas all come in three-part sections, centered around a pole that houses the electrical outlets and televisions in each tiny section. The walls are actually two metal protrusions at the top and bottom of the pole, draped with a mesh screen with charming pictures of snowy evergreens or flip flops in sand.
5. The anti-nausea medication and one of the chemo drugs (cytoxan) are administered via iv drip. The other medication (adriamyacin) is administered by a nurse who pushes three syringes full of the vile looking red stuff into the iv. She does so in a hazmat poncho and gloves, which really makes receiving the medicine a lot more frightening.
6. Adriamyacin is charmingly nicknamed "the red devil," and when my nurse came by to give me my dose, the sweet woman sitting next to me who has just finished her round of a/c asked her husband to re-hang the flip flop we'd taken down so we could talk to one another a few minutes before.
7. I have to be careful about germs. I knew this, it's obvious. What was less obvious to me as my chemo patient neighbor explained necessary germ precautions to me, was just how little I ever trouble myself to avoid germs unless in a public bathroom.
I felt tired and mildly nauseated yesterday. Today I worked and mostly felt fine, suffering only a mild bout of nausea that was quickly remedied by vernor's and anti-nausea medication. I was, however, exhausted by the end of the day and am still really tired. Like, no joke ready for pajamas and bed kind of tired. So I think that's what I'm going to do.
Thanks for all the well-wishing. So far this red devil has nothing on me, though I suspect this won't be the case for too much longer.
Things I learned about receiving chemotherapy:
1. Some folks who are getting their treatment are very loud, shouting everything they say and literally shouting out to nurses who are far away from them. This makes it difficult to relax in what is already a high-stress situation.
2. Other folks receiving their treatment do things like make long phone calls, leaving the automated phone system on speaker phone at top volume, which is a good way to ensure that other patients feel uncomfortable about their conversations.
3. The lights are fluorescent and too bright.
4. The thin screens that hang as dividers between patients' seating areas provide very little privacy. The seating areas all come in three-part sections, centered around a pole that houses the electrical outlets and televisions in each tiny section. The walls are actually two metal protrusions at the top and bottom of the pole, draped with a mesh screen with charming pictures of snowy evergreens or flip flops in sand.
5. The anti-nausea medication and one of the chemo drugs (cytoxan) are administered via iv drip. The other medication (adriamyacin) is administered by a nurse who pushes three syringes full of the vile looking red stuff into the iv. She does so in a hazmat poncho and gloves, which really makes receiving the medicine a lot more frightening.
6. Adriamyacin is charmingly nicknamed "the red devil," and when my nurse came by to give me my dose, the sweet woman sitting next to me who has just finished her round of a/c asked her husband to re-hang the flip flop we'd taken down so we could talk to one another a few minutes before.
7. I have to be careful about germs. I knew this, it's obvious. What was less obvious to me as my chemo patient neighbor explained necessary germ precautions to me, was just how little I ever trouble myself to avoid germs unless in a public bathroom.
I felt tired and mildly nauseated yesterday. Today I worked and mostly felt fine, suffering only a mild bout of nausea that was quickly remedied by vernor's and anti-nausea medication. I was, however, exhausted by the end of the day and am still really tired. Like, no joke ready for pajamas and bed kind of tired. So I think that's what I'm going to do.
Thanks for all the well-wishing. So far this red devil has nothing on me, though I suspect this won't be the case for too much longer.
Saturday, October 20, 2012
power port
There is a port under my skin. It makes it more fun if I imagine it is some sort of machine (I am now bionic!), but really it's just four small parts, two rubber, one metal, and one bright purple plastic. It is, however, delightfully called Power Port, and comes with a purple keychain, rubber bracelet, and wallet card, all to remind me to remind my doctors and any security personnel I may encounter that I have a port -no, no, a Power Port!- which could set off metal detectors and airport scanners. I guess if I ever wanted to sneak a pair of nail clippers onto an airplane, this is my chance.
It makes a quarter-sized lump on my chest about a half an inch tall, an inch below my collar bone. There is another incision in my neck just above my clavicle that was used to guide the insertion into the vein. Wearing any shirts but turtlenecks just got awkward. Now, in addition to trying to hide the hollowness where my breast used to be, I have this strange protrusion to contend with. Oh wardrobe, you left me woefully unprepared for the days when my chest would become the site of much dismantling, removing, stitching, gluing, and implanting. I bought all my shirts with the optimistic presumption that it wouldn't often be my goal to conceal my collar bone and the rather un-sultry few inches of skin directly below it. So it goes. Cancer is rife with unanticipated inconveniences.
I recently went to the local prosthetics shop and found that the process of getting a prosthesis is less straightforward than I anticipated. First, I had to be measured. Then, I was handed catalogs full of pictures of bras that mostly look like the unsexiest, most medical garments you can imagine, many of which are modeled by women old enough to be my mother, and selected the very few that didn't look that far outside the usual purview of my taste in undergarments. "Of course! Those are the newest ones. They're really getting better about making them... more attractive," said the friendly certified prosthesis fitter. After that, I had a strange, embarrassingly tearful, conversation with her about what mattered most to me in a synthetic breast. My tears ended abruptly when she told me that losing a body part -any part- is comparable to losing a loved one. A t-chart appeared in my mind: my breast on one side and my grandmother on the other. "Oh, no. It's not that bad." And I remembered I was in a prosthetics shop, where other people went for new legs and hands, and how lucky I was to still have those really important bits. The fitter put in an order for all the bras and silicone breast forms, told me to call her if I needed anything and I'm sure she meant it in the absurdly generous way where she'd talk me out of a teary episode again if I needed it. In a couple weeks I go back to see if any of them fit properly. If yes, I get to go home with my selections. If not, we start all over again. Fingers crossed for success on the first try, though I have a new personal policy of never getting my hopes about anything ever because it doesn't pan out well for me when I do. I was even a little bummed after this appointment as my previous conversations with the kind folks at the shop led me to believe I'd be leaving with my new pretend boob that very day. FYI: A prosthetics shop just looks like a doctor's office and there is nothing cool about it at all.
Interesting discovery: I can wear my old bras, but with no breast on the right side, they tend to ride up a little over my hollow, making it a bit uncomfortable. I found that the small bead-filled hand-warmer pouch my dear friend made is a perfect weight to keep the bra in place and properly filled so that under a tank top (which sits high enough on my chest to cover the gap between my chest wall and the cup), it looks convincingly like I have two breasts that are the same size!
Back to the port. I recently learned the following interesting, horrifying fact: In rare cases, one of the chemo medications I'll be receiving can leak through a vein (as in, seep/burn through the vein wall) and cause a CHEMICAL BURN FROM THE INSIDE OUT that could require
skin grafting. This doesn't happen often because doctors administer the
medicine in water to avoid said vein-melting, but if for whatever reason
the medication isn't evenly distributed in the water, burns
can still happen. It can also happen if a needle inserted into the vein accidentally pokes clear through it. More common, and way less terrifying, is the simple reality that the chemo meds are corrosive and tough on the body so when they're injected into smaller veins in the arms repeatedly, veins tend to show wear by collapsing and shrinking. The port's rubber top is a safe place for the doctors to inject the meds without having to worry about leakage and the white rubber tube tunnels the meds safely (if creepily) into a major vein in my chest! making for a more direct delivery of medication to my bloodstream with lower risk of vein damage. A doctor will just feel on the top of the protruding port for three tiny bumps that mark the edges of the rubber injection pad, center the needle in between them, and set up the iv there on my chest. Science. Weird.
I was scared heading into the procedure because they use the same combination of sedative and pain killer that was used for the egg harvest for which I was assured there that I would feel little and remember less, and that just wasn't true. I spent the whole procedure quite aware, so the idea that I would be just as aware while a tube was pushed into my vein and a doctor inserted a device into my chest sounded alarming. "Use a lot of those meds. Seriously. I don't want to be able to talk," was my repeated directive to the nurse at my iv. She kindly delivered and I woke up as the doctor applied the last of the bandages to the sound of my own soft snoring. If only sleep came so easily during the healing process...
My first chemo appointment is at 8:30 Wednesday morning. I'm nervous in a way that feels inarticulate, hard to place.
It makes a quarter-sized lump on my chest about a half an inch tall, an inch below my collar bone. There is another incision in my neck just above my clavicle that was used to guide the insertion into the vein. Wearing any shirts but turtlenecks just got awkward. Now, in addition to trying to hide the hollowness where my breast used to be, I have this strange protrusion to contend with. Oh wardrobe, you left me woefully unprepared for the days when my chest would become the site of much dismantling, removing, stitching, gluing, and implanting. I bought all my shirts with the optimistic presumption that it wouldn't often be my goal to conceal my collar bone and the rather un-sultry few inches of skin directly below it. So it goes. Cancer is rife with unanticipated inconveniences.
I recently went to the local prosthetics shop and found that the process of getting a prosthesis is less straightforward than I anticipated. First, I had to be measured. Then, I was handed catalogs full of pictures of bras that mostly look like the unsexiest, most medical garments you can imagine, many of which are modeled by women old enough to be my mother, and selected the very few that didn't look that far outside the usual purview of my taste in undergarments. "Of course! Those are the newest ones. They're really getting better about making them... more attractive," said the friendly certified prosthesis fitter. After that, I had a strange, embarrassingly tearful, conversation with her about what mattered most to me in a synthetic breast. My tears ended abruptly when she told me that losing a body part -any part- is comparable to losing a loved one. A t-chart appeared in my mind: my breast on one side and my grandmother on the other. "Oh, no. It's not that bad." And I remembered I was in a prosthetics shop, where other people went for new legs and hands, and how lucky I was to still have those really important bits. The fitter put in an order for all the bras and silicone breast forms, told me to call her if I needed anything and I'm sure she meant it in the absurdly generous way where she'd talk me out of a teary episode again if I needed it. In a couple weeks I go back to see if any of them fit properly. If yes, I get to go home with my selections. If not, we start all over again. Fingers crossed for success on the first try, though I have a new personal policy of never getting my hopes about anything ever because it doesn't pan out well for me when I do. I was even a little bummed after this appointment as my previous conversations with the kind folks at the shop led me to believe I'd be leaving with my new pretend boob that very day. FYI: A prosthetics shop just looks like a doctor's office and there is nothing cool about it at all.
Interesting discovery: I can wear my old bras, but with no breast on the right side, they tend to ride up a little over my hollow, making it a bit uncomfortable. I found that the small bead-filled hand-warmer pouch my dear friend made is a perfect weight to keep the bra in place and properly filled so that under a tank top (which sits high enough on my chest to cover the gap between my chest wall and the cup), it looks convincingly like I have two breasts that are the same size!
Back to the port. I recently learned the following interesting, horrifying fact: In rare cases, one of the chemo medications I'll be receiving can leak through a vein (as in, seep/burn through the vein wall) and cause a CHEMICAL BURN FROM THE INSIDE OUT that could require
skin grafting. This doesn't happen often because doctors administer the
medicine in water to avoid said vein-melting, but if for whatever reason
the medication isn't evenly distributed in the water, burns
can still happen. It can also happen if a needle inserted into the vein accidentally pokes clear through it. More common, and way less terrifying, is the simple reality that the chemo meds are corrosive and tough on the body so when they're injected into smaller veins in the arms repeatedly, veins tend to show wear by collapsing and shrinking. The port's rubber top is a safe place for the doctors to inject the meds without having to worry about leakage and the white rubber tube tunnels the meds safely (if creepily) into a major vein in my chest! making for a more direct delivery of medication to my bloodstream with lower risk of vein damage. A doctor will just feel on the top of the protruding port for three tiny bumps that mark the edges of the rubber injection pad, center the needle in between them, and set up the iv there on my chest. Science. Weird.I was scared heading into the procedure because they use the same combination of sedative and pain killer that was used for the egg harvest for which I was assured there that I would feel little and remember less, and that just wasn't true. I spent the whole procedure quite aware, so the idea that I would be just as aware while a tube was pushed into my vein and a doctor inserted a device into my chest sounded alarming. "Use a lot of those meds. Seriously. I don't want to be able to talk," was my repeated directive to the nurse at my iv. She kindly delivered and I woke up as the doctor applied the last of the bandages to the sound of my own soft snoring. If only sleep came so easily during the healing process...
My first chemo appointment is at 8:30 Wednesday morning. I'm nervous in a way that feels inarticulate, hard to place.
Monday, October 15, 2012
gray days
Saturday morning we got up at 5:30 and made a sleepy, cold trek to Ann Arbor to have my eggs harvested. Groggy after the extraction, I perked up when I heard a doctor announce the tally - 26 eggs. The nurse said she'd never seen a harvest so large. I returned to my sleepy state at ease.
Just a few days prior, I'd been notified that sometimes as few as 10 eggs are harvested. As some are lost at each stage of the process (maturity, fertilization, freezing, thawing, implantation), sometimes a couple is left with only one opportunity to create a pregnancy from this whole ordeal. Being that, for us, that chance is five years from now -five years later than we hoped we'd be trying to get pregnant- the idea that our chances rested on so few embryos with such a slim chance of being taken up by my uterus on the first and possibly only shot, well, it scared the shit out of me. One chance just didn't feel like enough. And it all but eliminated the possibility of surrogacy. We talked about starting a family earlier than the end of my Tamoxifen regimen. Generous friends offered up their wombs. It seemed tempting when I had in my head that there would be more than one opportunity to implant embryos. With so few on hand, the risk seemed great that they might be lost in one fell swoop; the idea that that effort might happen in someone else's body, negating my ability to carry the kid of my own genetic making, well, that scared the shit out of me, too. I spent the days in between that appointment and the harvest nervous, cautiously hopeful.
But 26 eggs! 26 eggs undoes those fears. At least, it undoes those fears until the doctor calls and says that only six of those eggs were mature, that of those six only three were successfully fertilized, that they might not all make it through freezing and thawing. When you get that phone call, 26 doesn't matter at all, except to intensify the blow, to suck the wind from sails inflated by high hopes. It's enough to send you running from the table where you are about to share lunch with a friend to sob in the handicapped stall of a public restroom while Rod Stewart plays just loudly enough to force you to ask the doctor to repeat everything he has to tell you. "Six?! As in 1, 2, 3, 4, 5, 6? Six." And then, "Three?! Three. 3. 3?"
I am glad that that chance is out there, even if it feels so tenuous. But I'm exhausted by these let-downs. I'm not sure I can weather another. Maybe my attitude is all wrong. I just hoped that the failsafe would feel... safer.
In other news, let the countdown begin: Chemo starts one week from Wednesday.
Just a few days prior, I'd been notified that sometimes as few as 10 eggs are harvested. As some are lost at each stage of the process (maturity, fertilization, freezing, thawing, implantation), sometimes a couple is left with only one opportunity to create a pregnancy from this whole ordeal. Being that, for us, that chance is five years from now -five years later than we hoped we'd be trying to get pregnant- the idea that our chances rested on so few embryos with such a slim chance of being taken up by my uterus on the first and possibly only shot, well, it scared the shit out of me. One chance just didn't feel like enough. And it all but eliminated the possibility of surrogacy. We talked about starting a family earlier than the end of my Tamoxifen regimen. Generous friends offered up their wombs. It seemed tempting when I had in my head that there would be more than one opportunity to implant embryos. With so few on hand, the risk seemed great that they might be lost in one fell swoop; the idea that that effort might happen in someone else's body, negating my ability to carry the kid of my own genetic making, well, that scared the shit out of me, too. I spent the days in between that appointment and the harvest nervous, cautiously hopeful.
But 26 eggs! 26 eggs undoes those fears. At least, it undoes those fears until the doctor calls and says that only six of those eggs were mature, that of those six only three were successfully fertilized, that they might not all make it through freezing and thawing. When you get that phone call, 26 doesn't matter at all, except to intensify the blow, to suck the wind from sails inflated by high hopes. It's enough to send you running from the table where you are about to share lunch with a friend to sob in the handicapped stall of a public restroom while Rod Stewart plays just loudly enough to force you to ask the doctor to repeat everything he has to tell you. "Six?! As in 1, 2, 3, 4, 5, 6? Six." And then, "Three?! Three. 3. 3?"
I am glad that that chance is out there, even if it feels so tenuous. But I'm exhausted by these let-downs. I'm not sure I can weather another. Maybe my attitude is all wrong. I just hoped that the failsafe would feel... safer.
In other news, let the countdown begin: Chemo starts one week from Wednesday.
Thursday, October 11, 2012
growing things
Boy, time flies when you're stimming. That's weird lingo I just learned for folks who are medically stimulating their ovaries' follicles to produce many, many eggs for the purposes of scary needle harvesting, petri dish fertilizing, and cryofreezing for later use.
For the past week I have been giving myself shots every night, which is almost as unpleasant as it sounds. It's not so painful, but it takes me a number of big breaths to will my hand to poke a small hole in my own stomach and then flood said hole with stinging medication. That said, the worst of it is certainly my own nerves and it's all over pretty quickly. On the bright side, it makes me feel like a total badass to give myself not just one, but TWO shots every day.
The worst part of this process is that it necessitates an appointment at the fertility clinic every other day where they draw my blood and I have an ultrasound. Time spent in the office has yet to exceed 45minutes. The drive takes three hours and it's all timed so as to prevent me from being able to work.
The first day I went in for the ultrasound I was mighty proud of myself for thinking ahead. I have gotten pretty good at wearing things that doctors won't make me remove entirely. Seeing the surgeon? He's going to look at my chest and will make me wear a gown, but I can put my sweater over it if it opens in the front. Cold problem solved. Knowing we'd be trying to get a look at things that sit really low in my abdomen and that I'd be asked to at least partially undress so I could wear an outrageously over-sized hospital gown that -refusing my hard work and weird knots- would repeatedly slip open, I broke my own only fashion rule (wear real pants when leaving the house) and showed up in a pair of yoga pants. The soft, stretchy waistband designed to fold over seemed like the perfect solution to being allowed to keep wearing my clothes. A nurse led me to the exam room where a she handed me a sheet, "You'll need to undress from the waist down."
"But I wore these pants, see?" I said, proudly lifting the hem of my shirt so she could see just how very ultrasound-friendly a wardrobe selection I had made, "So I can just fold the top down and we're good, no interference with the pictures. It's always so cold in here."
"Uhh, miss? It's a vaginal ultrasound."
"..."
So it goes. I still wear as many of my clothes as possible: knee-high socks, a sheet to hide from view the ultrasound and its probing, warm winter vest, thick sweater, scarf, and knit hat. I feel a little ridiculous wearing so many items of clothing while such a crucial one is missing; I feel vulnerable not doing so. It's interesting, if a little awkward, to study the images of my ovaries and their now-huge, black follicles, fluid-filled and plump with little eggs as the probe finds them. I ask a lot of questions. The configuration of four of the follicles looks remarkably like a skull, down to a small triangle where one usually finds two nostril openings (which didn't seem ominous until I typed that - good thing my superstition is only residual from a childhood of Catholicism and more enjoyable ghost stories). My ovaries are hormone-inflated giant versions of their usual selves. I can feel them, just a little.
Tonight I will switch up the medical routine, moving on up from follicle stimulants to a maturation trigger. Saturday morning we will head to the clinic for the last time until we're ready to give pregnancy a go and the doctors will get our gametes together to make sweet science on the 10th anniversary of the first time we decided to date each other. Romance.
For the past week I have been giving myself shots every night, which is almost as unpleasant as it sounds. It's not so painful, but it takes me a number of big breaths to will my hand to poke a small hole in my own stomach and then flood said hole with stinging medication. That said, the worst of it is certainly my own nerves and it's all over pretty quickly. On the bright side, it makes me feel like a total badass to give myself not just one, but TWO shots every day.
The worst part of this process is that it necessitates an appointment at the fertility clinic every other day where they draw my blood and I have an ultrasound. Time spent in the office has yet to exceed 45minutes. The drive takes three hours and it's all timed so as to prevent me from being able to work.
The first day I went in for the ultrasound I was mighty proud of myself for thinking ahead. I have gotten pretty good at wearing things that doctors won't make me remove entirely. Seeing the surgeon? He's going to look at my chest and will make me wear a gown, but I can put my sweater over it if it opens in the front. Cold problem solved. Knowing we'd be trying to get a look at things that sit really low in my abdomen and that I'd be asked to at least partially undress so I could wear an outrageously over-sized hospital gown that -refusing my hard work and weird knots- would repeatedly slip open, I broke my own only fashion rule (wear real pants when leaving the house) and showed up in a pair of yoga pants. The soft, stretchy waistband designed to fold over seemed like the perfect solution to being allowed to keep wearing my clothes. A nurse led me to the exam room where a she handed me a sheet, "You'll need to undress from the waist down."
"But I wore these pants, see?" I said, proudly lifting the hem of my shirt so she could see just how very ultrasound-friendly a wardrobe selection I had made, "So I can just fold the top down and we're good, no interference with the pictures. It's always so cold in here."
"Uhh, miss? It's a vaginal ultrasound."
"..."
So it goes. I still wear as many of my clothes as possible: knee-high socks, a sheet to hide from view the ultrasound and its probing, warm winter vest, thick sweater, scarf, and knit hat. I feel a little ridiculous wearing so many items of clothing while such a crucial one is missing; I feel vulnerable not doing so. It's interesting, if a little awkward, to study the images of my ovaries and their now-huge, black follicles, fluid-filled and plump with little eggs as the probe finds them. I ask a lot of questions. The configuration of four of the follicles looks remarkably like a skull, down to a small triangle where one usually finds two nostril openings (which didn't seem ominous until I typed that - good thing my superstition is only residual from a childhood of Catholicism and more enjoyable ghost stories). My ovaries are hormone-inflated giant versions of their usual selves. I can feel them, just a little.
Tonight I will switch up the medical routine, moving on up from follicle stimulants to a maturation trigger. Saturday morning we will head to the clinic for the last time until we're ready to give pregnancy a go and the doctors will get our gametes together to make sweet science on the 10th anniversary of the first time we decided to date each other. Romance.
Thursday, October 4, 2012
helping
Paperwork intimidates me. Filling out forms, keeping track
of dates, following nitpicky instructions – it all makes my eyes blur. When
reading something technical and detailed, I lose the ability to focus my eyes,
a curtain drops in the space between eyeball and brain and I have to repeatedly
start over. I am precisely the person you could swindle with a contract. I get
hung up on the questions which are always too straightforward considering that
the circumstances never are. “Were you unemployed before your diagnosis?” Yes
and no; I went in to work on the day I was diagnosed because I had work to do,
but I was not paid because the last day of the school year was three days prior.
I had work in the Fall, but I did not work during the summer and filed for unemployment
two weeks after the date of my diagnosis. So was I, or wasn’t I? No? I think
the answer is no.
I try to spend some of my days looking for assistance. It is
a nightmare. I cannot tell you the number of sites I have visited for various
patient advocacy, co-payment assistance, debt-relief, and direct bill-payment
support agencies, painstakingly reading their qualification guidelines, only to
be told that they are all presently out of funds for breast cancer patients. I
have learned that it is the practice of these agencies to compartmentalize
their funding, so that if I had bladder cancer or lymphoma instead, I might be
eligible for funds; those accounts have not been tapped by patients more savvy
or proactive than myself. Or, more accurately, those funds are larger and are
rightly set aside for the targets of deadlier diseases.
Jason tells me not to worry about the money. He tells me all
the time because I worry about it all the time. But it gets to me. A few months
back this cancer popped up and I handed him a heavy burden – to support us both
financially, to keep track of our finances and pay the insurance and hospital
bills as they came, to be sturdy when I was not, to waylay his educational
plans – and it is a burden he has borne admirably, carried as though it were a
lighter load than it really is. Cancer was like the abrupt stop of our train
engine, each car hitting the one before it with the heavy thud of its own
inertia stopped. Meanwhile I have navigated the appointments; kept track of my
care; read about cancer and nutrition and side-effects and doctors and
surgeries; gotten depressed and spent more than a few listless days wondering
what the fuck happened to my life, feeling sorry for myself on the sofa over chemotherapy
studies and statistics and episodes of Northern Exposure. I burden him further by
seeking praise or assurance whenever I accomplish some minor task: “I vacuumed and paid the water bill out of my
savings account! I took out the trash and
the recycling!” as though there is something miraculous about accomplishing
tasks, in the plural. They are declarations always met with happy encouragement,
and tempered by an internal, “congratufuckinglations.” I am a regular Donna
Reed. That being the circumstance, it hits me hard when I try to be proactive,
to find a way to bear the burden of the cost load, and I can’t do it. The
frustration is immense. The train is long, the collisions keep coming.
There are other days, like Tuesday where nothing happens but
I still manage to spend the entire day on the phone going back and forth about
prescriptions and who has which form and why U of M staff failed yet again to
properly handle very important paperwork with a very important deadline.
Suddenly a day has passed and the only thing I’ve done is get one prescription
ordered and see that someone will call me back within the week about more
tests. How, I wonder daily, does anyone do this alone?
Ah, cancer, my personal, wretched little earthquake.
Tomorrow I work. I haven’t been so excited since we were
vacation planning.
Tuesday, October 2, 2012
adjusting
Since the first surgery I have felt like a foreigner in my own skin. It has horrified to me know that just a week ago I lay, skin open on an operating room table while a sterile, stainless
nozzle washed away what couldn't be scraped, an abrupt push of
fluid coursing over me, antiseptic. I have felt vulnerable and damaged, like confidence and sexuality were flushed from my system with so many bits of ruined tissue. As though those things were located in a particular place-- not in some sense of vanity about my body, but in it's relative normality, in the simple, predictable, reality that all the pieces were there.
I was so sure I wasn't that attached to my breasts, but now, as I contemplate this unbalanced physicality, I cannot but think how, as little as I may have liked my them, as little as I thought of them, they lent me at least a little of the stuff of womanhood. It would be easier if it weren't just one missing. The severe asymmetry is something in and of itself to contend with.
I once imagined that after a mastectomy, the chest would be flat, as though the only thing cut away was the protrusion of the breast itself. In reality, the wall of muscle that wraps around ribs is scraped, muscle and fat pulled from the collar bone to the shoulder, just inside the armpit, and across to the sternum, so what is left behind is concave, a palpable gap, a shallow sinkhole. This was all done as the first step of my first surgery. The reconstruction then filled in the empty space, or at least most of it. Last Monday was the undoing of the reconstruction, a step back to square one.
My v-neck shirts hang, skewed in such a way that the entire collar lies too far to the right, exposing sometimes all, sometimes just the outer edge of the concavity. This is a difficult adjustment. Still, something about it looks safer, cleaner, less damaged than what held its place so recently. In that way, it is easier to interact with my body in ways I once took for granted, mostly showering, and dressing. Still, the absence startles me on occasion, as I sit holding a book open and reach across my body with my free right hand for the cup of tea steeping on the end table to my left, when I turn onto my side in bed and my arm slumps, crossing over me on it's drop toward the mattress.
For now, I have finagled a temporary solution that makes it easier for me to be out in the world, minimizes the sense that my body is a sideshow spectacle.
Strangely enough, for all the difficulty these repeated adjustments have brought, I'm finally settling in. At least at this point I know what's in store.
Let the chemo countdown begin.
I was so sure I wasn't that attached to my breasts, but now, as I contemplate this unbalanced physicality, I cannot but think how, as little as I may have liked my them, as little as I thought of them, they lent me at least a little of the stuff of womanhood. It would be easier if it weren't just one missing. The severe asymmetry is something in and of itself to contend with.
I once imagined that after a mastectomy, the chest would be flat, as though the only thing cut away was the protrusion of the breast itself. In reality, the wall of muscle that wraps around ribs is scraped, muscle and fat pulled from the collar bone to the shoulder, just inside the armpit, and across to the sternum, so what is left behind is concave, a palpable gap, a shallow sinkhole. This was all done as the first step of my first surgery. The reconstruction then filled in the empty space, or at least most of it. Last Monday was the undoing of the reconstruction, a step back to square one.
My v-neck shirts hang, skewed in such a way that the entire collar lies too far to the right, exposing sometimes all, sometimes just the outer edge of the concavity. This is a difficult adjustment. Still, something about it looks safer, cleaner, less damaged than what held its place so recently. In that way, it is easier to interact with my body in ways I once took for granted, mostly showering, and dressing. Still, the absence startles me on occasion, as I sit holding a book open and reach across my body with my free right hand for the cup of tea steeping on the end table to my left, when I turn onto my side in bed and my arm slumps, crossing over me on it's drop toward the mattress.
For now, I have finagled a temporary solution that makes it easier for me to be out in the world, minimizes the sense that my body is a sideshow spectacle.
Strangely enough, for all the difficulty these repeated adjustments have brought, I'm finally settling in. At least at this point I know what's in store.
Let the chemo countdown begin.
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