It has been an awfully long time since I've written anything here. It turned into a space to air my negativity, which, in turn, made it a space that fueled my negativity. I didn't need any help in that arena, so it seemed best to leave it alone for a while.
A lot of things have happened. There is a spot on my liver and another on my lung. We don't know what they are, but in six months they haven't changed. Maybe that's something, and maybe it isn't. In another six months, and every six months for the foreseeable future, we will keep looking.
I started and finished a course of radiation. It was hard and painful and exhausting. My skin burst and I got terribly sad.
I started new meds. One is a monthly injection that stops my ovaries from working. Another is a tiny pill that stops estrogen from being produced in other parts of my body. One treats the side-effects of the other two, which initially gave me terrible hot flashes and wreaked havoc on my sleep.
A mass has been removed from my right breast. The surgeon is confident that it is a cyst. The official pathology report hasn't come in. I've spent months in fear of this little bump, hours lightly prodding it, as if I could will it away or coax some sort of confession out of it. And now it's gone. There is relief in its absence, and in the doctor's confidence in its harmlessness. Official word is due by Tuesday.
This morning Jason when on vacation. There have been a lot of times over the course of the past two years when I would have asked him not to go, when my anxiety that the other shoe had reached its precipice was too big, my need for him too pressing. But I've been working hard on planning for life even if we're waiting to hear that there may be more cancer and so, fuck the other shoe. I'm sick of waiting for disaster to befall me and sick of not making plans because another disaster may be just around the corner and because I haven't really gotten break from searching for the next catastrophe. Jason going on vacation is an important part of this business of not waiting. He's tired of waiting, too. I'll spare you the details of our discussion--part totally rational adult, part pep-talk.
I bought myself a plane ticket to visit friends I see too rarely. I called DHS to talk with them about adoption, and I called an agency we may work with. I have a fun plan every weekend for the next month and a half. I'm joining the Y with one of my dearest friends. We're making plans to fix up the house. The snow is melting. Jason is nearly done with his degrees. I'm probably cancer-free. Life, it would seem, is good. Shoes or no shoes.
Sunday, March 8, 2015
Wednesday, August 27, 2014
easier
Last night I went upstairs with Jason. He was getting ready to hop on the elliptical and I was going to read in bed. I sat down and instead of reading, I found myself crying, not for any one reason but because sometimes this is all just so impossibly sad.
We had seen the oncologist earlier in the day. She explained my new medication regimen (ovarian suppression + an aromotase inhibitor*) and that it kicks our possible pregnancy efforts another three years down the road. She talked about chemo and how it could offer a small benefit, but also carries with it the smallish risk of permanent neuropathy and damage to my ovaries. She also used the word "curable" in reference to my disease. Curable. And that sounded like magic, a glistening possibility amid so much very darkness.
Still, I get sad. See, I spent so much time and effort adjusting myself to an end to surgeries and a date not so terribly far off when we could try to have a baby and I gripped it with all my might because I needed it so badly. I needed it to reassure myself that some new version of normal was out there. That life would go on and that it could be long and full. That it wouldn't all be cancer and fear.
And then this. I feel positively sucker punched, a stunned, gasping sort of feeling. And some days are harder than others.
So I sat and cried, and Jason brought me tissues, laid next to me and kissed my surgical arm, listened at the times I could talk and at the times when I couldn't. He picked up The Princess Bride from his bedside table and read to me (The Princess Bride, it turns out, is rather hilarious) until I fell asleep, able for the first time in weeks to sleep (as I normally do) on my side.
I woke up this morning to a kitchen full of treats: a red velvet cake cooling in two pans on the stove, an enormous balloon, a card, a bottle of fancy juice in the refrigerator.
Today is our third anniversary.
I wish everyone had someone who could make them feel so wonderfully cared for. It makes these days easier, and I'm grateful every day.
We had seen the oncologist earlier in the day. She explained my new medication regimen (ovarian suppression + an aromotase inhibitor*) and that it kicks our possible pregnancy efforts another three years down the road. She talked about chemo and how it could offer a small benefit, but also carries with it the smallish risk of permanent neuropathy and damage to my ovaries. She also used the word "curable" in reference to my disease. Curable. And that sounded like magic, a glistening possibility amid so much very darkness.
Still, I get sad. See, I spent so much time and effort adjusting myself to an end to surgeries and a date not so terribly far off when we could try to have a baby and I gripped it with all my might because I needed it so badly. I needed it to reassure myself that some new version of normal was out there. That life would go on and that it could be long and full. That it wouldn't all be cancer and fear.
And then this. I feel positively sucker punched, a stunned, gasping sort of feeling. And some days are harder than others.
So I sat and cried, and Jason brought me tissues, laid next to me and kissed my surgical arm, listened at the times I could talk and at the times when I couldn't. He picked up The Princess Bride from his bedside table and read to me (The Princess Bride, it turns out, is rather hilarious) until I fell asleep, able for the first time in weeks to sleep (as I normally do) on my side.
I woke up this morning to a kitchen full of treats: a red velvet cake cooling in two pans on the stove, an enormous balloon, a card, a bottle of fancy juice in the refrigerator.
Today is our third anniversary.
I wish everyone had someone who could make them feel so wonderfully cared for. It makes these days easier, and I'm grateful every day.
Thursday, August 21, 2014
differences
There are, most likely, some differences between you and me--namely, that I have a disease and hopefully, probably, you do not. It changes things, this cancer. A lot of well-meaning people (whom I adore) are quick to remind me that anyone can die at any time--right out of the clear blue--that tragedies hang around in secret places for everyone and fall upon them unpredictably. I know. But the spectral reality of the unforeseen and the wonders and disasters it may hold are vastly different from the palpable disease I've had twice now. This is no potential errant teenager texting a friend from behind the wheel while you head home, happy, from the farmers' market. This is a disease that has twice demonstrated its very real aggression, showing up after extensive surgery, chemotherapy, and daily medication. It necessitates a new response, in turn aggressive and persistent. It means that the future that unrolls before me is probably laden with more snags than yours, and it may well be shorter. I'm not being gloomy, I'm being realistic. This is true, and I have to parse out how best to hold that reality, to swallow and store it safely, because I have a life to live in the meantime.
I am certain that every person who has reminded me that we may all get hit by buses or swing through Colorado and pick up the plague has meant well, has not intended to diminish my experience. But those risks belong to everyone, collectively they are meted out in tiny doses and then carried, a little particle by everyone so that our measurements of the risk may remind us of their very smallness. Mine is a more precise risk that I have no choice but to possess all to myself, however much support and love you all provide. And it is lonely, achingly lonely in a way that squeezes my heart and leans on my stomach.
My math just isn't the same. And I'm glad for that, impossibly relieved that this sort of burden is not widely borne. I want you to be healthy with dependable longevity. I don't want you bulldozing the terrain by creating fears of your own; it feels dishonest, or at least, beside the point.
I am certain that every person who has reminded me that we may all get hit by buses or swing through Colorado and pick up the plague has meant well, has not intended to diminish my experience. But those risks belong to everyone, collectively they are meted out in tiny doses and then carried, a little particle by everyone so that our measurements of the risk may remind us of their very smallness. Mine is a more precise risk that I have no choice but to possess all to myself, however much support and love you all provide. And it is lonely, achingly lonely in a way that squeezes my heart and leans on my stomach.
My math just isn't the same. And I'm glad for that, impossibly relieved that this sort of burden is not widely borne. I want you to be healthy with dependable longevity. I don't want you bulldozing the terrain by creating fears of your own; it feels dishonest, or at least, beside the point.
Thursday, August 14, 2014
surgery again
Tomorrow I will have another surgery to remove cancer from my chest. This time the disease has taken up in the skin, a soft-tissue recurrence. The surgery is outpatient and therefore promises to be a fairly minor procedure. Skin will be removed, lymph nodes will be removed, all will be sent to pathology to look for more cancer cells and I will be sent home, ostensibly cancer-free. Easy.
But I can't shake this irrational thought that I'm in for the first surgery I had two years ago to remove cancer, the one that left me utterly dependent and in agonizing pain, the one that coerced my very willing mother through her breaking point, that was followed by weeks of surgical drain maintenance, pain-medicated fog and stretches for my arm that wanted so badly to seize up and move less forever.
But it isn't that surgery, I know. Regardless, I am scared for reasons both rational and irrational. The surgeon is, after all, looking in the lymph nodes for more cancer and finding cancer in the lymphatic system would obviously be bad news. I am also scared that she will find easily clear margins around the tumor and that the nodes are spotless. Because if those nodes are clean and if the margins around the tumor are small and clean, that means, from a medical perspective, that I need only minimal adjuvant therapies. But I don't want minimal follow-up treatments. I want everything. I want radiation and chemo and stronger daily meds and another mastectomy and to be stripped bare of every organ and bit of skin, laid out on a table, scrubbed clean with cell-destroying antiseptic, and reassembled, safe. Because I do not feel safe. Because we did everything we could do the last time around and here I am again, with this fucking disease and I just want it gone. So I do not want to be told by any happy doctor that this lucky patient can get away with just a short round of radiation. I can't feel the security in that, though I know it's there, right on top, waving its jubilant little hands. I recognize that this perspective is coming from a place of fear and damage, so don't go thinking I'm all irrational all of the time, I'm not. Just scared.
But I can't shake this irrational thought that I'm in for the first surgery I had two years ago to remove cancer, the one that left me utterly dependent and in agonizing pain, the one that coerced my very willing mother through her breaking point, that was followed by weeks of surgical drain maintenance, pain-medicated fog and stretches for my arm that wanted so badly to seize up and move less forever.
But it isn't that surgery, I know. Regardless, I am scared for reasons both rational and irrational. The surgeon is, after all, looking in the lymph nodes for more cancer and finding cancer in the lymphatic system would obviously be bad news. I am also scared that she will find easily clear margins around the tumor and that the nodes are spotless. Because if those nodes are clean and if the margins around the tumor are small and clean, that means, from a medical perspective, that I need only minimal adjuvant therapies. But I don't want minimal follow-up treatments. I want everything. I want radiation and chemo and stronger daily meds and another mastectomy and to be stripped bare of every organ and bit of skin, laid out on a table, scrubbed clean with cell-destroying antiseptic, and reassembled, safe. Because I do not feel safe. Because we did everything we could do the last time around and here I am again, with this fucking disease and I just want it gone. So I do not want to be told by any happy doctor that this lucky patient can get away with just a short round of radiation. I can't feel the security in that, though I know it's there, right on top, waving its jubilant little hands. I recognize that this perspective is coming from a place of fear and damage, so don't go thinking I'm all irrational all of the time, I'm not. Just scared.
Saturday, August 9, 2014
lucky
Seven years ago Jason came back to Kalamazoo. He had just finished four years of military service. I was in the throes of ending a miserable relationship. We hung out, as friends, like we did whenever he returned to Kalamazoo on leave. We went to the park. We went to see his mechanic, who gave me flowers. We ate ice cream at the Frosty Boy. We had a drink at a tiny, dingy bar. I remember the day in lovely snapshots: laughing on the swings, the sun through the windshield, the mechanic's dirty coveralls, both of us laughing and fighting with ice cream, the longing to never go home. We had spent four years apart and still, I was impossibly, hopelessly, giddily in love.
This evening we went back to the Frosty Boy, and rather than looking across the table at the person I wanted so desperately to build a life with, I got to look at the person with whom I share a life and all of the wonders and nightmarish bumps it has handed us in these past seven years. We said less tonight, sharing a relief too big for words, the relief of a clean bone scan and no metastatic cancer. The relief of less cancer.
Sometimes, you get lucky.
This evening we went back to the Frosty Boy, and rather than looking across the table at the person I wanted so desperately to build a life with, I got to look at the person with whom I share a life and all of the wonders and nightmarish bumps it has handed us in these past seven years. We said less tonight, sharing a relief too big for words, the relief of a clean bone scan and no metastatic cancer. The relief of less cancer.
Sometimes, you get lucky.
Friday, August 8, 2014
looking
I always panic when they break out the needles. I know it promises to hurt very little, and that compared with other pains I have experienced, the prick of a needle is, well, just that. Even so, I breathe quickly and tap my hand frantically until Jason comes to hold it. And while the nurse is wishing I would just calm the fuck down already, he mouths to words to terrible pop songs to distract me. In the end, it's never as bad as I think it will be.
I panicked again when the bone scan monitor zeroed in on me like a slim, high-tech light box printed with grid measurements. It sank quickly toward my face, stopping just short of my nose to hum and scan, like being pinned under the abrasively curious eye of a robot, suspiciously lacking the breath that ought to have been heaving in my face, searching my bones with such invasive rigor, clueless as to the consequences of its findings.The attendant strapped a tight band of elastic around my arms and feet as though patients are apt to make a break for it. I understand the temptation.
I prefer the CT scan, which, while very similar to the bone scan, is significantly shorter and only entails passing through a narrow cylinder where x-ray beams work in concert to create a complete image of my insides.
I knew that we wouldn't learn anything today, but the hopeful puppy in my heart kept its nose upturned, sniffing, thinking that maybe--just maybe--some kind doctor would come out of the control room and declare these scans undeniably clean. Just so I could sleep tonight. Or read. Or write the many lessons I haven't yet written. Or do anything but wait.
No such doctor appeared.
And so we wait, again, with hope and fear, thumbing each possibility over and over. Learning a pocketful of beach stones by touch.
Metastatic disease is just...sitting there, being possible, a sinkhole under the road waiting to be discovered. Unknowable. Disastrous. Nonexistent?
Please, Monday, get here quickly.
I panicked again when the bone scan monitor zeroed in on me like a slim, high-tech light box printed with grid measurements. It sank quickly toward my face, stopping just short of my nose to hum and scan, like being pinned under the abrasively curious eye of a robot, suspiciously lacking the breath that ought to have been heaving in my face, searching my bones with such invasive rigor, clueless as to the consequences of its findings.The attendant strapped a tight band of elastic around my arms and feet as though patients are apt to make a break for it. I understand the temptation.
I prefer the CT scan, which, while very similar to the bone scan, is significantly shorter and only entails passing through a narrow cylinder where x-ray beams work in concert to create a complete image of my insides.
I knew that we wouldn't learn anything today, but the hopeful puppy in my heart kept its nose upturned, sniffing, thinking that maybe--just maybe--some kind doctor would come out of the control room and declare these scans undeniably clean. Just so I could sleep tonight. Or read. Or write the many lessons I haven't yet written. Or do anything but wait.
No such doctor appeared.
And so we wait, again, with hope and fear, thumbing each possibility over and over. Learning a pocketful of beach stones by touch.
Metastatic disease is just...sitting there, being possible, a sinkhole under the road waiting to be discovered. Unknowable. Disastrous. Nonexistent?
Please, Monday, get here quickly.
Thursday, August 7, 2014
here we go again
Tuesday I went to the East Ann Arbor Medical Center for my last reconstructive surgery, eager for the relief and healing that lie on the other side of anesthetized sleep. No more surgery. A reclamation of my body. A bit more rebuilding in service of moving on to my life, whole and healthy. A small knot of scar tissue was removed and sent to pathology, just to be safe. Fat was grafted onto new locations to conceal where it had been cut away in previous operations. I awoke in high spirits and feeling rather like I'd been run over. Intense pain or not, here I was sitting at the end of a two-year long operative journey. What sweet relief.
I got a phone call Wednesday afternoon. I recognized U of M's number and answered, anticipating a nurse on the other end asking if I was doing alright, and for a moment I was so touched that my surgeon of the hectic OR schedule would call to check in on me. "Sara," he said in his typical mixture of urgency and gravity, "How are you doing? Is Jason home with you? I have the results from pathology...the tissue we removed is cancerous. You are having a recurrence. Dr. ... will call you within the hour. Are you ok? I'm so sorry. Would you like me to talk with Jason?"
Ok, thank you. Yes. No. no no no no. Yes. No. Thank you. thank you. My voice shrinking, heart racing, hands shaking.
June 11, 2012. Late Monday morning. Jason is at work and I am standing at the top of the stairs, looking out the window when the phone rings. It is the curt PA from my primary care doctor's office, ironically named Joy, calling to tell me I have cancer. Time stops. I call Jason. By the time I manage to drag myself downstairs, he is home. An instant.
In the days that followed we called everyone to tell them The News, saying it so many times over it started to lose its meaning. Phone call after phone call of me, steely and numb on one end, while family and friends were thrown into shock and sorrow on the other.
I made some of those calls again last night, listened to my aunts beg it away and try to rationalize an unpredictable phenomenon that offers no explanation for its presence. It is just here, for no particular reason at all. A trick of replication, a miscommunication, an accident of biology.
This morning a nurse called to let us know that I had an appointment in breast imaging. For a moment I was sure this wasn't my life. I could so clearly see us there, holding hands flat on our backs in bed, staring wide-eyed and groggy at the ceiling, wishing with all our might that we didn't have to get up to go in search of more cancer.
At the appointment, an anxious nurse who clearly had not looked at my chart before coming to see me asked questions about my medical history and failed to hide her surprise at the sheer number and very recentness of my operations. She took me to the same ultrasound room I visited two years ago, where a calm radiologist informed me that a series of precancerous lesions would necessitate a mastectomy. I lay on the same bed in the same position while a new doctor ran the same ultrasound wand over the same breast looking for new cancer. What she found was an ill-defined tumor, warped by the seeping and swelling of the post-operative tissue, and ominous calcification in the surrounding skin.
There are a lot of things we don't know yet, like whether this recurrence is isolated or if it has metastasized to other parts of my body. I will have a bone scan and a ct scan done tomorrow to try to find out. Sometime next week, I will have another surgery to remove the affected skin and to extract and analyze another small set of lymph nodes to make sure they're clean. In a few weeks, when I'm healed from these operations, I'll have an MRI to get more detailed pictures of areas of concern. In the meantime, I haven't the slightest what to do with myself. The air feels syrupy, hours slipping by too quickly and without incident, my emotions on rotation between incredible fear and disbelief, with periodic, unguided anger thrown in for good measure. The waiting is the very worst part.
I am so, so scared.
I got a phone call Wednesday afternoon. I recognized U of M's number and answered, anticipating a nurse on the other end asking if I was doing alright, and for a moment I was so touched that my surgeon of the hectic OR schedule would call to check in on me. "Sara," he said in his typical mixture of urgency and gravity, "How are you doing? Is Jason home with you? I have the results from pathology...the tissue we removed is cancerous. You are having a recurrence. Dr. ... will call you within the hour. Are you ok? I'm so sorry. Would you like me to talk with Jason?"
Ok, thank you. Yes. No. no no no no. Yes. No. Thank you. thank you. My voice shrinking, heart racing, hands shaking.
June 11, 2012. Late Monday morning. Jason is at work and I am standing at the top of the stairs, looking out the window when the phone rings. It is the curt PA from my primary care doctor's office, ironically named Joy, calling to tell me I have cancer. Time stops. I call Jason. By the time I manage to drag myself downstairs, he is home. An instant.
In the days that followed we called everyone to tell them The News, saying it so many times over it started to lose its meaning. Phone call after phone call of me, steely and numb on one end, while family and friends were thrown into shock and sorrow on the other.
I made some of those calls again last night, listened to my aunts beg it away and try to rationalize an unpredictable phenomenon that offers no explanation for its presence. It is just here, for no particular reason at all. A trick of replication, a miscommunication, an accident of biology.
This morning a nurse called to let us know that I had an appointment in breast imaging. For a moment I was sure this wasn't my life. I could so clearly see us there, holding hands flat on our backs in bed, staring wide-eyed and groggy at the ceiling, wishing with all our might that we didn't have to get up to go in search of more cancer.
At the appointment, an anxious nurse who clearly had not looked at my chart before coming to see me asked questions about my medical history and failed to hide her surprise at the sheer number and very recentness of my operations. She took me to the same ultrasound room I visited two years ago, where a calm radiologist informed me that a series of precancerous lesions would necessitate a mastectomy. I lay on the same bed in the same position while a new doctor ran the same ultrasound wand over the same breast looking for new cancer. What she found was an ill-defined tumor, warped by the seeping and swelling of the post-operative tissue, and ominous calcification in the surrounding skin.
There are a lot of things we don't know yet, like whether this recurrence is isolated or if it has metastasized to other parts of my body. I will have a bone scan and a ct scan done tomorrow to try to find out. Sometime next week, I will have another surgery to remove the affected skin and to extract and analyze another small set of lymph nodes to make sure they're clean. In a few weeks, when I'm healed from these operations, I'll have an MRI to get more detailed pictures of areas of concern. In the meantime, I haven't the slightest what to do with myself. The air feels syrupy, hours slipping by too quickly and without incident, my emotions on rotation between incredible fear and disbelief, with periodic, unguided anger thrown in for good measure. The waiting is the very worst part.
I am so, so scared.
Sunday, March 2, 2014
numbers, useful and less so
February was brutal. I'm sure you noticed. Perhaps you, too, lost your ability to feel wonder or awe and stared out of poorly sealed windows trying to remember what it felt like to be hot, struggled to get up in the morning, and couldn't seem to tap into the motivation to do anything that needed to be done.
I got through the first anniversary of finishing chemo with relative ease, though one year closer to the end of predictive, comforting data, the aspiration to get back to the place and time where we were fighting the disease with a full arsenal weighed heavy in my mind. And it seems I was looking at it all wrong.
I think I'm learning to let go.
Those numbers, as much as I have tried to make of them, as tightly as I have clung to them, and as useful as they were for getting me through the decisions about adjuvant therapy, mean so much less than I'd like them to. I needed to be reminded of that. These numbers don't mean that I won't get cancer within the next nine years; they mean that I probably won't get cancer in the next nine years. There is no perfectly safe zone. I'd slipped into a pattern of quite unscientific thinking, and it failed. I have so much less control and less information than I'd hoped, and this, somehow, is so much easier to manage. If I can never know, then I can stop obsessing about cancer waiting for me out in the shadowy alleys of my future because it may be one block or one hundred miles away and I just don't get to know. What, in the face of such unpredictability, is the point of gripping so tightly to threads that cannot support my intense, inaccurate hope? Uncertainty has disarmed me, and I am so very relieved.
I have a new oncologist whom I like very much. She is at once terribly positive and fantastically practical, which I find very comforting in a doctor. I am sure my feelings toward her are in no small part due to the news she shared with me: while I will still be on Tamoxifen for ten years in total, I can take a break as soon as two years from now to have a baby. Just two beautifully short years lie between now and trying to conceive (naturally! She doesn't even want me to use the embryos yet), instead of the four I had anticipated. This news feels like a fragile little thing, as though it might be taken from me if I celebrate it too loudly, so consider this a quiet declaration, the very happiest of quiet declarations.
I got through the first anniversary of finishing chemo with relative ease, though one year closer to the end of predictive, comforting data, the aspiration to get back to the place and time where we were fighting the disease with a full arsenal weighed heavy in my mind. And it seems I was looking at it all wrong.
I think I'm learning to let go.
Those numbers, as much as I have tried to make of them, as tightly as I have clung to them, and as useful as they were for getting me through the decisions about adjuvant therapy, mean so much less than I'd like them to. I needed to be reminded of that. These numbers don't mean that I won't get cancer within the next nine years; they mean that I probably won't get cancer in the next nine years. There is no perfectly safe zone. I'd slipped into a pattern of quite unscientific thinking, and it failed. I have so much less control and less information than I'd hoped, and this, somehow, is so much easier to manage. If I can never know, then I can stop obsessing about cancer waiting for me out in the shadowy alleys of my future because it may be one block or one hundred miles away and I just don't get to know. What, in the face of such unpredictability, is the point of gripping so tightly to threads that cannot support my intense, inaccurate hope? Uncertainty has disarmed me, and I am so very relieved.
I have a new oncologist whom I like very much. She is at once terribly positive and fantastically practical, which I find very comforting in a doctor. I am sure my feelings toward her are in no small part due to the news she shared with me: while I will still be on Tamoxifen for ten years in total, I can take a break as soon as two years from now to have a baby. Just two beautifully short years lie between now and trying to conceive (naturally! She doesn't even want me to use the embryos yet), instead of the four I had anticipated. This news feels like a fragile little thing, as though it might be taken from me if I celebrate it too loudly, so consider this a quiet declaration, the very happiest of quiet declarations.
Tuesday, January 28, 2014
come indoors
Yesterday Jason and I watched a movie where one of the characters died of cancer. This set my emotions into overdrive because my biggest struggle since getting diagnosed is my certainty that this is how I will die, and worse, that it will happen relatively early in my life.
I am two days short of my one-year anniversary of completing chemotherapy and, like I explained to Jason, I feel no comfort as the treatment recedes into the past. Instead, I feel uneasiness, like I am on a conveyor belt moving slowly closer to the ten-year mark where the data stops offering predictions about my health. That's a scary point to be headed for. And now, instead of being ten years away, it is only nine years away. I want to go back, to the security of chemotherapy, to the security of using the most aggressive tools we have to stop myself from dying. But that is impossible for two reasons: 1. Physics, 2. I'm pretty sure the doctors won't just keep giving me chemo because I'm having a hard moving on. Maybe it's worth asking? I kid.
I was explaining this to Jason and he said, quite matter-of-factly, that he believed I was looking at it incorrectly. Not as in, "You need to be more positive in your thinking," but, "Your thinking is factually misguided." The logic behind his assessment is simple: ten years of continuing treatment is enough time to find out if anything new is growing.
That makes sense. It makes perfect sense. And I'd never thought of it that way.
Naturally, the alarm system in my bran started ringing, an army of neurotic overseers, jumping up and down, waving their hands wildly overhead, screaming their protestations in desperate hopes of keeping me frightened and as such, vigilant--"But it could start growing at the 7 or 8 year mark, and then you might not know! There is never any certainty! That may not be a totally accurate interpretation of those numbers which are a report on the likelihood of recurrence within ten years of finishing chemo, and not of years eleven through forever!" But a tightness released in my chest and I thought that maybe, just maybe, Jason's logic was a perfectly reasonable one that I could get behind.
Most of the time I'm just scared to relax, as though by staying fearful I am on high alert and therefore won't let anything slip by. I realize that this is impossible, that there is even a line of reasoning that says that keeping said vigilance is stressful and filling me up with inflammation that is a boon to growing cancers. The fight or flight part of my brain is working its magic, convincing the rational bits that staying in the terrifying wilderness with the sense that the beast might always be there is better because then at least it won't be such a fucking shock. But it doesn't do any good to wait for the beast. No amount of panicked searching over my shoulder will force it to reveal itself any sooner than the medical measures already in place. I feel like my frightened, quivering self has been invited indoors, and maybe here I can sit, and breathe a little more slowly.
I am two days short of my one-year anniversary of completing chemotherapy and, like I explained to Jason, I feel no comfort as the treatment recedes into the past. Instead, I feel uneasiness, like I am on a conveyor belt moving slowly closer to the ten-year mark where the data stops offering predictions about my health. That's a scary point to be headed for. And now, instead of being ten years away, it is only nine years away. I want to go back, to the security of chemotherapy, to the security of using the most aggressive tools we have to stop myself from dying. But that is impossible for two reasons: 1. Physics, 2. I'm pretty sure the doctors won't just keep giving me chemo because I'm having a hard moving on. Maybe it's worth asking? I kid.
I was explaining this to Jason and he said, quite matter-of-factly, that he believed I was looking at it incorrectly. Not as in, "You need to be more positive in your thinking," but, "Your thinking is factually misguided." The logic behind his assessment is simple: ten years of continuing treatment is enough time to find out if anything new is growing.
That makes sense. It makes perfect sense. And I'd never thought of it that way.
Naturally, the alarm system in my bran started ringing, an army of neurotic overseers, jumping up and down, waving their hands wildly overhead, screaming their protestations in desperate hopes of keeping me frightened and as such, vigilant--"But it could start growing at the 7 or 8 year mark, and then you might not know! There is never any certainty! That may not be a totally accurate interpretation of those numbers which are a report on the likelihood of recurrence within ten years of finishing chemo, and not of years eleven through forever!" But a tightness released in my chest and I thought that maybe, just maybe, Jason's logic was a perfectly reasonable one that I could get behind.
Most of the time I'm just scared to relax, as though by staying fearful I am on high alert and therefore won't let anything slip by. I realize that this is impossible, that there is even a line of reasoning that says that keeping said vigilance is stressful and filling me up with inflammation that is a boon to growing cancers. The fight or flight part of my brain is working its magic, convincing the rational bits that staying in the terrifying wilderness with the sense that the beast might always be there is better because then at least it won't be such a fucking shock. But it doesn't do any good to wait for the beast. No amount of panicked searching over my shoulder will force it to reveal itself any sooner than the medical measures already in place. I feel like my frightened, quivering self has been invited indoors, and maybe here I can sit, and breathe a little more slowly.
Wednesday, January 8, 2014
the worst news
When I was newer to the experience of having cancer, I wrote here that the only news worse than cancer was More Cancer. Because at that point we were dealing with finding out whether or not I had More Cancer and it seemed that my capacity to deal with the disease would dissolve if it reached a certain measurement or existed over a certain area. But then there was More Cancer and we removed it and it was awful, but it was ok, because it was better to know about it than to leave it untreated. Ironically, there was some comfort in finding More Cancer because it felt like we had found All of the Cancer, and that was good and safe.
It started to seem like the worst news wasn't More Cancer, but that everything After Cancer changes and that life becomes permeated with a brittleness I struggle to explain. Other things--like giant medical bills and the disaster with my mother and not being able to have kids and how I was woefully underprepared for the paralyzing fear and deep sadness that have filled up the spaces in my brain that were once so efficiently managing doctors and treatment--came along to occupy my thoughts. I've continued to fear More Cancer, but I always place it in the future, somewhere after that frightening data drop-off that can tell me nothing about the efficacy of my treatments after ten years. For ten years I am safe, and come 2023 I will have reached the frightening precipice of cancerous possibility. In the meantime, these other things, with their immediacy, seemed scarier because they are problems I do not know how to solve. We have means of removing More Cancer, and I can manage them with a modicum of professionalism.
And then two moles started to change in all the ways that set alarm bells ringing. One of them, once round, smooth, and a dark chocolate brown began to leak color into the pale surrounding skin, like a sponge dampening a towel on which it has been set. The smooth, small protrusion of it became bumpy and black. The other turned from a petite dark brown spot to a red-brown speck with a blurry tan border. I'd been trying not to be alarmed, to just pay attention to the changes so that I could talk to my primary care doctor about them at my upcoming appointment.
And then the larger, darker one fell off. I was looking at it after a shower to monitor changes when I touched it lightly to see if it still felt bumpy and at barely being grazed, it fell off. This is not a good sign. It also possibly a sign of nothing, but all of these things are also signs of Something.
I go to see the primary care doctor tomorrow. I don't know if he's planning on doing an excision so we can get these things biopsied (which is my hope), or if he's just going to look at them and set up another appointment for excision. But I'm getting more biopsies either way. Because we're looking for More Cancer.
I was right the first time, about the worst news.
***Update: It seems that all my worry was likely (thankfully!) for naught. I had both moles removed today and my doctor says that he is 99.9% sure they are nothing. You may have noticed that I was freaking out a little bit about that.
It started to seem like the worst news wasn't More Cancer, but that everything After Cancer changes and that life becomes permeated with a brittleness I struggle to explain. Other things--like giant medical bills and the disaster with my mother and not being able to have kids and how I was woefully underprepared for the paralyzing fear and deep sadness that have filled up the spaces in my brain that were once so efficiently managing doctors and treatment--came along to occupy my thoughts. I've continued to fear More Cancer, but I always place it in the future, somewhere after that frightening data drop-off that can tell me nothing about the efficacy of my treatments after ten years. For ten years I am safe, and come 2023 I will have reached the frightening precipice of cancerous possibility. In the meantime, these other things, with their immediacy, seemed scarier because they are problems I do not know how to solve. We have means of removing More Cancer, and I can manage them with a modicum of professionalism.
And then two moles started to change in all the ways that set alarm bells ringing. One of them, once round, smooth, and a dark chocolate brown began to leak color into the pale surrounding skin, like a sponge dampening a towel on which it has been set. The smooth, small protrusion of it became bumpy and black. The other turned from a petite dark brown spot to a red-brown speck with a blurry tan border. I'd been trying not to be alarmed, to just pay attention to the changes so that I could talk to my primary care doctor about them at my upcoming appointment.
And then the larger, darker one fell off. I was looking at it after a shower to monitor changes when I touched it lightly to see if it still felt bumpy and at barely being grazed, it fell off. This is not a good sign. It also possibly a sign of nothing, but all of these things are also signs of Something.
I go to see the primary care doctor tomorrow. I don't know if he's planning on doing an excision so we can get these things biopsied (which is my hope), or if he's just going to look at them and set up another appointment for excision. But I'm getting more biopsies either way. Because we're looking for More Cancer.
I was right the first time, about the worst news.
***Update: It seems that all my worry was likely (thankfully!) for naught. I had both moles removed today and my doctor says that he is 99.9% sure they are nothing. You may have noticed that I was freaking out a little bit about that.
Monday, December 23, 2013
more hard parts
I couldn't have picked more perfectly uncomfortable radio program topics if I'd been sitting at a table writing this morning with a team of gifted screenwriters instead of living it. As it happens, I was living it and not writing it, though I wish it could have been the other way around.
On the way to my mother's appointment with the orthopedic surgeon, Diane Rhem interviewed two men about the new pope's views on abortion and family planning and poverty. We drove in silence, each pretending to ignore the broadcast, each pretending that she wasn't judging me and that I, in turn, wasn't angry with her for that judgement. As if she has any idea of what it was like...
She spent the hour or so at the doctor's office being impossibly chipper, cracking jokes and insisting that I could leave if I wanted to. I maintained civility. I'm not ready to be her friend yet, not without some sort of coming to terms with the past year and half.
We waited at the check out counter. She nervously eyed an elderly couple, leaned toward me and whispered loudly, "I don't want to get old."
"I don't know what to tell you." All I could think was how much I hope that I can get old, and how old she is in spite of her age.
At our next stop, she lost patience with my inability to play at being friends and yelled at me as I tried to help her into the store.
She came out--stubbornly pulling herself along with one functional foot, three bottles of wine in plastic bags on her lap, crutches held awkwardly at her side--and ignored me when I tried to help her into the car.
On our way back to the apartment, Terry Gross interviewed the makers of a new television series about adults with elderly parents receiving palliative care. They talked about the burden and the privilege of being there for the awful time our loved ones spend in the hospital. about being advocates and caretakers. about love.
And while she stared out the window brooding, I snapped.
I told her that she didn't get to punish me for having a hard time with this. I reminded her that she had lied to me and said she was dying, that she had been vicious while I was sick and scared for my life, that she had concocted strange stories about me and Jason as though I might somehow come to believe a fiction about my own actions. "But I'm here," I said, "taking you where you need to go and walking your dogs, and I'll keep doing it, but you do not get to demand that I not feel what I'm feeling." She turned back to the window, silent. I cried.
Wordlessly, she refused my help out of the car or up the stairs where she slammed the door in my face.
It's hard to know what to do next, if anything.
Cue Lynn Rosetto Kasper's explanation of the best holiday recipes for eating away your guilt and sorrow.
On the way to my mother's appointment with the orthopedic surgeon, Diane Rhem interviewed two men about the new pope's views on abortion and family planning and poverty. We drove in silence, each pretending to ignore the broadcast, each pretending that she wasn't judging me and that I, in turn, wasn't angry with her for that judgement. As if she has any idea of what it was like...
She spent the hour or so at the doctor's office being impossibly chipper, cracking jokes and insisting that I could leave if I wanted to. I maintained civility. I'm not ready to be her friend yet, not without some sort of coming to terms with the past year and half.
We waited at the check out counter. She nervously eyed an elderly couple, leaned toward me and whispered loudly, "I don't want to get old."
"I don't know what to tell you." All I could think was how much I hope that I can get old, and how old she is in spite of her age.
At our next stop, she lost patience with my inability to play at being friends and yelled at me as I tried to help her into the store.
She came out--stubbornly pulling herself along with one functional foot, three bottles of wine in plastic bags on her lap, crutches held awkwardly at her side--and ignored me when I tried to help her into the car.
On our way back to the apartment, Terry Gross interviewed the makers of a new television series about adults with elderly parents receiving palliative care. They talked about the burden and the privilege of being there for the awful time our loved ones spend in the hospital. about being advocates and caretakers. about love.
And while she stared out the window brooding, I snapped.
I told her that she didn't get to punish me for having a hard time with this. I reminded her that she had lied to me and said she was dying, that she had been vicious while I was sick and scared for my life, that she had concocted strange stories about me and Jason as though I might somehow come to believe a fiction about my own actions. "But I'm here," I said, "taking you where you need to go and walking your dogs, and I'll keep doing it, but you do not get to demand that I not feel what I'm feeling." She turned back to the window, silent. I cried.
Wordlessly, she refused my help out of the car or up the stairs where she slammed the door in my face.
It's hard to know what to do next, if anything.
Cue Lynn Rosetto Kasper's explanation of the best holiday recipes for eating away your guilt and sorrow.
Friday, December 20, 2013
bright spots and dark spots
I haven't used the space to write about my mother. I think because, on some level, her big-brotheresque stories about being able to constantly monitor me still linger in the back of my mind and I think she'll find it. I don't think I've got any readers who don't know me, and if you know me, you probably know that she and I have a horrible relationship. You probably also know that we haven't actually spoken to each other in over a hear. I use that term, "speaking," fairly liberally, because since I told her that I wouldn't talk to her until she stopped screaming at me (for not appropriately assuaging her fears that I might die while I was dealing with my diagnosis and subsequent surgery and adjuvant therapy planning), she hasn't actually spoken words to me, but has screamed via text message about how she's dying (not true) and how I am a terrible person for abandoning her.
Sometimes I think she's right. Most of the time I appreciate the quiet weeks in between the texts.
She is not well. I know that. But I couldn't keep letting that be my primary concern in life once I ran into something so large that it took all of my focus and strength. I needed to take care of myself before I could take care of her.
A week ago she broke her ankle.
I picked her up from the hospital and took her home and have been stopping by every day to walk her dogs.
It's awful.
At first she was terse, resentful of needing my help, I'm sure. She's moved on to pretending that nothing is wrong, ignoring me or playing dumb or tossing out trump cards when I indicate that I, too, know what it's like to be incapacitated by surgery. To feel frustrated and gloomy and scared. To be in pain that seems like it might never end. To be dependent.
She wasn't there for me in those days. Indeed, two days after getting home from two surgeries and a week in the hospital, she picked a fight with me that led to the ensuing year and half of (relative) silence.
So she pretends that those days never existed, or that if they did, I am just melodramatic, exaggerating for pity, which lets her be the bigger victim.
And I keep going over there. Keep biting my tongue. Keep not screaming at her for accusing me of shaving my head after finishing chemo to garner more sympathy. And not confronting her about how she lied and told me she had lung cancer, or about how she tried to make me think that Jason was cheating on me.
And I spend a little part of each day feeling like I might explode. And I don't know what to do.
I keep thinking that there ought to be a point when shit stops piling up. I can't be the case that all of my life will be this perpetual onslaught of disasters, right? But it doesn't ever seem to stop and I'm just so fucking tired.
I suppose in these dark moments, it is easy to overlook the bright ones that come in between, and there certainly are bright spots.
Sometimes I think she's right. Most of the time I appreciate the quiet weeks in between the texts.
She is not well. I know that. But I couldn't keep letting that be my primary concern in life once I ran into something so large that it took all of my focus and strength. I needed to take care of myself before I could take care of her.
A week ago she broke her ankle.
I picked her up from the hospital and took her home and have been stopping by every day to walk her dogs.
It's awful.
At first she was terse, resentful of needing my help, I'm sure. She's moved on to pretending that nothing is wrong, ignoring me or playing dumb or tossing out trump cards when I indicate that I, too, know what it's like to be incapacitated by surgery. To feel frustrated and gloomy and scared. To be in pain that seems like it might never end. To be dependent.
She wasn't there for me in those days. Indeed, two days after getting home from two surgeries and a week in the hospital, she picked a fight with me that led to the ensuing year and half of (relative) silence.
So she pretends that those days never existed, or that if they did, I am just melodramatic, exaggerating for pity, which lets her be the bigger victim.
And I keep going over there. Keep biting my tongue. Keep not screaming at her for accusing me of shaving my head after finishing chemo to garner more sympathy. And not confronting her about how she lied and told me she had lung cancer, or about how she tried to make me think that Jason was cheating on me.
And I spend a little part of each day feeling like I might explode. And I don't know what to do.
I keep thinking that there ought to be a point when shit stops piling up. I can't be the case that all of my life will be this perpetual onslaught of disasters, right? But it doesn't ever seem to stop and I'm just so fucking tired.
I suppose in these dark moments, it is easy to overlook the bright ones that come in between, and there certainly are bright spots.
Friday, December 6, 2013
sweet relief
This thing I've been waiting for for over a year finally happened. It happened and I didn't even notice, but I suppose that's exactly how monumental events of this variety ought to happen.
I went the entire day--from the time I got up and get dressed, through my work day of moving around and crouching and huddling with students over their writing, of putting on taking off my jacket, until I got home and had made dinner--without thinking about my breasts. At no point did I have to try to discretely adjust my prosthesis, pull my scarf lower, my sweater tighter, or my collar higher to hide the awkward, abrupt protrusion that housed the hard, bulbous tissue expander. When I used the bathroom I didn't bother looking at my chest to see if the prosthesis was lopsided or if my bra was fitted weirdly over the expander (where I lack sensation). No stretch was interrupted with the genuine fear that I'd disordered my cumbersome, temporary breasts. The expander didn't push into my bicep, nudging uncomfortably to remind me of its presence.
I just got up and went to work and did regular people things, and thought about regular people things, without being distracted by feeling like a very irregular person. I haven't done that in a very long time.
I went the entire day--from the time I got up and get dressed, through my work day of moving around and crouching and huddling with students over their writing, of putting on taking off my jacket, until I got home and had made dinner--without thinking about my breasts. At no point did I have to try to discretely adjust my prosthesis, pull my scarf lower, my sweater tighter, or my collar higher to hide the awkward, abrupt protrusion that housed the hard, bulbous tissue expander. When I used the bathroom I didn't bother looking at my chest to see if the prosthesis was lopsided or if my bra was fitted weirdly over the expander (where I lack sensation). No stretch was interrupted with the genuine fear that I'd disordered my cumbersome, temporary breasts. The expander didn't push into my bicep, nudging uncomfortably to remind me of its presence.
I just got up and went to work and did regular people things, and thought about regular people things, without being distracted by feeling like a very irregular person. I haven't done that in a very long time.
Wednesday, November 27, 2013
surgery
Yesterday I had a surgery. The awkward, hard tissue expander that had been in place for months was removed in replaced with a much more breast-like implant.
The tissue expander was an odd, plastic pouch inserted under the muscle at my mastectomy site, slowly inflated by shots into the hard port. It crinkled and made a hollow sound with a strange rippling reverberation against my ribs when I bumped it . As it grew, it was stretched to beyond the size of my natural breast, expanding in an unnatural, somewhat cylindrical protrusion on my chest. It stuck out a bit past my rib cage so that every time I loved my arm, I brushed against it. It was difficult to dress, in its last expansion phase necessitating that I wear my prosthetic breast over top of my natural breast to compensate for the extreme size difference.
Now it is gone, and in its wake is a body that will soon feel much more normal, much less like a construction site, easier to dress, comfortable.
This is an important part of my new normal.
The tissue expander was an odd, plastic pouch inserted under the muscle at my mastectomy site, slowly inflated by shots into the hard port. It crinkled and made a hollow sound with a strange rippling reverberation against my ribs when I bumped it . As it grew, it was stretched to beyond the size of my natural breast, expanding in an unnatural, somewhat cylindrical protrusion on my chest. It stuck out a bit past my rib cage so that every time I loved my arm, I brushed against it. It was difficult to dress, in its last expansion phase necessitating that I wear my prosthetic breast over top of my natural breast to compensate for the extreme size difference.
Now it is gone, and in its wake is a body that will soon feel much more normal, much less like a construction site, easier to dress, comfortable.
This is an important part of my new normal.
Friday, November 15, 2013
staying, from this end
I've had a lot of people remind me, as though left to my own devices I'd forget, that I'm lucky to have Jason. I know it, and I say it a lot, too. He's good support. He makes me laugh. He makes me feel smart and important. But that's not what they mean, and sometimes it's not what I mean either.
What we all collectively mean, at least sometimes, when we say this is that I'm lucky that he stayed.
I don't know that he even knows the extent of it, but doctors and nurses asked regularly how he was coping and how his coping was affecting me. They were always relieved to hear that I wasn't afraid he'd leave, which is so heartbreaking. Even the women who fitted me for my prosthesis kept reminding me that my husband was going to be so happy. They were wrong about that. He wasn't the one who cared.
It does not say good things about what we expect from men that so many people approach his having stayed with such gratitude and surprise. It insults Jason. It indicates that abandonment is a common experience for a lot of women, so say the nurses, doctors, and prosthesis fitters, most common for women with breast cancer.
On another level, it does terrible things to me. Because I already fell apart about what a burden it was. Because on some level I do not believe that I'm worth the trouble. Because there were times when I wished he would leave me so that he could have the sort of life I wanted him to have. The one he wanted. The one we planned. Because I sat sobbing more times than I can count, cursing the fact that the insurance came through his job, because if it didn't I could have just left, given that he showed no signs of being willing to pick a different life for himself. Because if we all think it's remarkable that he stuck by me, then don't we all think, just a little, that he would have preferred not to? Because if we think that, then aren't we all agreeing that I'm really not worth the trouble?
Because I already feel so fucking lucky and indebted that I'm struggling to consider myself his equal.
So I'm glad that my family is completely head over heels for him. And I'm glad that the people who ask have a positive story to file alongside their collection of bad ones: The Good Man Who Stayed. And I'm glad that on some level I know that he was never going anywhere. What I don't always know is why it was worth staying. But I don't think I can handle another reminder of how lucky I am. But I could take a few that this--that staying--was exactly what we all thought would happen. That it is worthwhile. Because that's the thing I still struggle to believe.
What we all collectively mean, at least sometimes, when we say this is that I'm lucky that he stayed.
I don't know that he even knows the extent of it, but doctors and nurses asked regularly how he was coping and how his coping was affecting me. They were always relieved to hear that I wasn't afraid he'd leave, which is so heartbreaking. Even the women who fitted me for my prosthesis kept reminding me that my husband was going to be so happy. They were wrong about that. He wasn't the one who cared.
It does not say good things about what we expect from men that so many people approach his having stayed with such gratitude and surprise. It insults Jason. It indicates that abandonment is a common experience for a lot of women, so say the nurses, doctors, and prosthesis fitters, most common for women with breast cancer.
On another level, it does terrible things to me. Because I already fell apart about what a burden it was. Because on some level I do not believe that I'm worth the trouble. Because there were times when I wished he would leave me so that he could have the sort of life I wanted him to have. The one he wanted. The one we planned. Because I sat sobbing more times than I can count, cursing the fact that the insurance came through his job, because if it didn't I could have just left, given that he showed no signs of being willing to pick a different life for himself. Because if we all think it's remarkable that he stuck by me, then don't we all think, just a little, that he would have preferred not to? Because if we think that, then aren't we all agreeing that I'm really not worth the trouble?
Because I already feel so fucking lucky and indebted that I'm struggling to consider myself his equal.
So I'm glad that my family is completely head over heels for him. And I'm glad that the people who ask have a positive story to file alongside their collection of bad ones: The Good Man Who Stayed. And I'm glad that on some level I know that he was never going anywhere. What I don't always know is why it was worth staying. But I don't think I can handle another reminder of how lucky I am. But I could take a few that this--that staying--was exactly what we all thought would happen. That it is worthwhile. Because that's the thing I still struggle to believe.
Thursday, November 7, 2013
reminders
I knew when I accepted a job at a parochial school that there would
be many challenges; as a non-religious person, just this new proximity
to people and their faith was foreign territory.
The first time I sat through mass, blood boiling over the hypocrisy of people who would claim to love and forgo judgement praying to their god that others be denied the right to marry, I knew that this promised to be tough in ways I hadn't anticipated.
And then I found myself sitting opposite a slight, plain-faced seventeen-year-old girl and wishing her infertile. I didn't keep wishing it, but for a minute I sent mental daggers and my own meaningless prayer into the universe that experience might teach her what I know that she does not.
She was explaining to me that when she becomes a doctor, she intends to be an activist of sorts, one that does her utmost to halt the twin scourges of abortion and in vitro fertilization. This was how I learned that the Catholic church preaches against the use of in vitro fertilization.
But you have no idea, you are just a child.
I wanted to explain to her that until she has sat on the crumpling paper of an examination table listening to an oncologist tell her that disease makes pregnancy risky and treatment may make it impossible, she cannot possibly write off medial procedures--let alone seek to make them unavailable--for people in circumstances she cannot possibly understand. There is just so very much she does not know.
She wanted me to help her with a college entrance essay, and I did, though my blood seethed thinking of the ways this girl would judge me if she knew anything at all about my life. I bit my tongue carefully, talked about writing conventions.
I work in a place where judgement comes easily, slipping off the tongues of coworkers without a second thought. It is difficult to get through a day without feeling casually judged or picking up little reminders that I am not playing by the right set of rules dropped carelessly by so many of my coworkers.
But generally, my classroom is a little haven of tough questions and good books, of patience and love, a place where value judgements are addressed firmly, with efficiency and sincerity. I suppose that's why it felt like such an affront when this girl attacked something so intensely personal and dear to me.
I don't let them do that to each other; it hadn't occurred to me that I might, however inadvertently, be the target.
The first time I sat through mass, blood boiling over the hypocrisy of people who would claim to love and forgo judgement praying to their god that others be denied the right to marry, I knew that this promised to be tough in ways I hadn't anticipated.
And then I found myself sitting opposite a slight, plain-faced seventeen-year-old girl and wishing her infertile. I didn't keep wishing it, but for a minute I sent mental daggers and my own meaningless prayer into the universe that experience might teach her what I know that she does not.
She was explaining to me that when she becomes a doctor, she intends to be an activist of sorts, one that does her utmost to halt the twin scourges of abortion and in vitro fertilization. This was how I learned that the Catholic church preaches against the use of in vitro fertilization.
But you have no idea, you are just a child.
I wanted to explain to her that until she has sat on the crumpling paper of an examination table listening to an oncologist tell her that disease makes pregnancy risky and treatment may make it impossible, she cannot possibly write off medial procedures--let alone seek to make them unavailable--for people in circumstances she cannot possibly understand. There is just so very much she does not know.
She wanted me to help her with a college entrance essay, and I did, though my blood seethed thinking of the ways this girl would judge me if she knew anything at all about my life. I bit my tongue carefully, talked about writing conventions.
I work in a place where judgement comes easily, slipping off the tongues of coworkers without a second thought. It is difficult to get through a day without feeling casually judged or picking up little reminders that I am not playing by the right set of rules dropped carelessly by so many of my coworkers.
But generally, my classroom is a little haven of tough questions and good books, of patience and love, a place where value judgements are addressed firmly, with efficiency and sincerity. I suppose that's why it felt like such an affront when this girl attacked something so intensely personal and dear to me.
I don't let them do that to each other; it hadn't occurred to me that I might, however inadvertently, be the target.
Wednesday, September 18, 2013
memory
When things keep happening, as things are wont to do, it gets easy to fall in line with a routine that then makes it easy to sink into feeling like life has always been this way. Like there was never cancer to contend with. Like I don't still fear for my life. Like it all transpired in a life that belongs to someone else.
It didn't, though. It happened right here in this living room, this house, this town. This body. And you were there for it, you remember.
I just have such trouble fitting the whole experience into my sense of my own life. Square peg, round hole. And so it is that I generally set about my days like any other person, only sometimes I want to stop and scream, DID YOU KNOW I HAD CANCER?! BECAUSE I DID AND IT WAS THE SCARIEST THING THAT HAS EVER HAPPENED TO ME AND SOMETIMES I'M STILL VERY, VERY SCARED.
But usually I'm not. Usually, I feel just like anyone else. Until these memories slam into me, tiny flashes of my own face in the mirror as I fasten a scarf around my baldness. My own finger nails, sore and brittle, peeling away from the tips of my fingers. The darkness that pervaded days when I lay sick and inactive. An image of my own feet, pacing in circles while I wait for a doctor or insurance agent on the phone.
I'm still looking for the places where all of these pegs fit. And trying hard to convince myself that I'm really making the space they need, instead of just wishing I could forget them all.
Which is really the contradictory kicker, because on one hand I want so badly to pretend it never happened, and on the other I am so scared that already there are things I've forgotten.
It didn't, though. It happened right here in this living room, this house, this town. This body. And you were there for it, you remember.
I just have such trouble fitting the whole experience into my sense of my own life. Square peg, round hole. And so it is that I generally set about my days like any other person, only sometimes I want to stop and scream, DID YOU KNOW I HAD CANCER?! BECAUSE I DID AND IT WAS THE SCARIEST THING THAT HAS EVER HAPPENED TO ME AND SOMETIMES I'M STILL VERY, VERY SCARED.
But usually I'm not. Usually, I feel just like anyone else. Until these memories slam into me, tiny flashes of my own face in the mirror as I fasten a scarf around my baldness. My own finger nails, sore and brittle, peeling away from the tips of my fingers. The darkness that pervaded days when I lay sick and inactive. An image of my own feet, pacing in circles while I wait for a doctor or insurance agent on the phone.
I'm still looking for the places where all of these pegs fit. And trying hard to convince myself that I'm really making the space they need, instead of just wishing I could forget them all.
Which is really the contradictory kicker, because on one hand I want so badly to pretend it never happened, and on the other I am so scared that already there are things I've forgotten.
Friday, September 6, 2013
back at it
Hello my few abandoned readers. A lot has happened since I last made an entry here. I have a full-time teaching job. Oddly, this job is at a tiny parochial high school and two weeks in I am certain that I stick out like a horribly liberal sore thumb that just cannot be fitted to the conservative confines of this school. I don't think I'll get fired, but it looms as a more-real possibility than it has at any other job I've ever worked.
The job has its rewards. And its serious trials.
I am nearing the end of the reconstructive surgery process. My chest is now home to a strange contraption that stretches my muscle and skin, preparing them to eventually house the implant that will take the place of my long-gone cancerous breast.
I got my first post-chemo haircut last week. Just a trim, really, but it was satisfying to need that trim, and to put myself in the books for another cut now that the presence of hair on my head is a certainty.
Generally, things are good.
Still, reminders pop up that life keeps being hard in myriad ways.
Someone that you do not know whom I love very much tried to end his life a few weeks ago. He did not succeed, but survives with brain damage that is likely to leave him permanently dependent.
I talked to his mother tonight. We talked about bravery and about saying sentences you never thought you'd have to say. We talked about postponing the saying of said sentences because maybe, just maybe, we could hold out long enough and eventually they wouldn't be true.
But they are.
Her son has brain damage.
And she is brave. She is brave because she didn't cave in under the immeasurable weight of this disaster. Because she finds positivity to propel her through each day. But then--as she said, and as I said when people told me I was brave--what other option do we have? The irony of asking this question in light of this situation does not escape us. Still, it doesn't feel like bravery to keep going.
But I want to tell her that she is brave and strong and full of love and that these are admirable and important qualities. I want her to know that about herself.
And I want for her to have some reprieve from the people around her being in perpetually painful situations, some of their own making and others that are just chance. I want it to matter that she has tried to make their lives good. To change the course of events trickling back to and heaping themselves upon her.
It seems like there are people whose lives are not plagued by heartache and disaster. I hear about them, and I think I know a few. But maybe everyone's life is this hard and I am just unaware. I guess I don't believe in whatever metric might be used to gauge one against the other anyway.
This has been a year of many great losses, some good and some bad. Moving on keeps happening, regardless of how actively I participate. Maybe coming back here is a way to be an agent in the process.
The job has its rewards. And its serious trials.
I am nearing the end of the reconstructive surgery process. My chest is now home to a strange contraption that stretches my muscle and skin, preparing them to eventually house the implant that will take the place of my long-gone cancerous breast.
I got my first post-chemo haircut last week. Just a trim, really, but it was satisfying to need that trim, and to put myself in the books for another cut now that the presence of hair on my head is a certainty.
Generally, things are good.
Still, reminders pop up that life keeps being hard in myriad ways.
Someone that you do not know whom I love very much tried to end his life a few weeks ago. He did not succeed, but survives with brain damage that is likely to leave him permanently dependent.
I talked to his mother tonight. We talked about bravery and about saying sentences you never thought you'd have to say. We talked about postponing the saying of said sentences because maybe, just maybe, we could hold out long enough and eventually they wouldn't be true.
But they are.
Her son has brain damage.
And she is brave. She is brave because she didn't cave in under the immeasurable weight of this disaster. Because she finds positivity to propel her through each day. But then--as she said, and as I said when people told me I was brave--what other option do we have? The irony of asking this question in light of this situation does not escape us. Still, it doesn't feel like bravery to keep going.
But I want to tell her that she is brave and strong and full of love and that these are admirable and important qualities. I want her to know that about herself.
And I want for her to have some reprieve from the people around her being in perpetually painful situations, some of their own making and others that are just chance. I want it to matter that she has tried to make their lives good. To change the course of events trickling back to and heaping themselves upon her.
It seems like there are people whose lives are not plagued by heartache and disaster. I hear about them, and I think I know a few. But maybe everyone's life is this hard and I am just unaware. I guess I don't believe in whatever metric might be used to gauge one against the other anyway.
This has been a year of many great losses, some good and some bad. Moving on keeps happening, regardless of how actively I participate. Maybe coming back here is a way to be an agent in the process.
Saturday, April 20, 2013
new work
When I was 23, I was driving home one night from one of many grueling
conversations with an ex who was determined not to let our relationship
end. A drunk driver blew through a stop sign going at least 45mph down a
residential street and struck my car just in front of the driver's side
door. The impact flattened the hood of my car and sent me spinning
until I finally came to a rest in my black car that now had no
headlights facing oncoming traffic. I sincerely wasn't sure I was alive
or conscious until I realized that the sound I could hear was no longer
my squealing tires, but rather, my own voice screaming. A few people came out of
their houses, consoled me on the side of the road, waited for the
police, and took note of the direction in which the drunk driver had run away from the scene.
A day or two later, my mom drove me out to the scrap lot where my car had been towed to collect a few belongings from the car (title, books, etc.). I froze up as soon as we found the car, looking at the twisted heap of metal in the daylight put a new perspective on what I'd walked away from. My mother cried, terrified at the carnage before her. It had been easier in the immediacy of the accident to think of other things, to let shock do its job. And so it was when I walked up to the sliding glass doors and expansive lobby of the University of Michigan Cancer Center.
The drive was easy, light on the traffic and just rushed enough that I was preoccupied with the time, racing to be less late. Frantic, I tapped the steering wheel waiting impatiently for traffic lights to turn, made my up the winding Medical Center Drive and parked near the entrance to the University of Michigan Cancer Center. Six months and three days from the last time I walked into this hospital. Six months, three days, and one hour from when my surgeon came to me to say he wasn't sure he could save the dying tissue on my chest, when I sobbed to nurses and begged them to wait just a little longer so I could at least see Jason before going in for emergency surgery. Six months, three days, and two hours from the moment my surgeon had been pulled from the operating room, abandoning another patient, to evaluate me. Six months was not enough time.
Every step toward the door tightened a vice on my chest, pushed harder and harder on tears eager to burst from their ducts. What a mess. Unconsolable, I steadied my quavering voice as best I could while I answered intake questions. I left my forms at the front desk to try to settle my nerves in the bathroom, only to return for them and jettison myself into the same weepy, shaky state in which I'd entered the medical office.
A nurse practitioner and surgeon each did a physical exam, and arrived at the same verdict: my scars are healing nicely, I am healthy, there is no suspicion of more cancer in my lymph nodes, left breast, or on the chest wall - all clear. Safe, right? But all I could think was that I wanted to leave. My eyes dove for the exit door again and again. I wanted to be away from this place because even in the face of very good news, I cannot seem to associate this building with anything but loss and the agony that was those unsure days after my first surgery, when I sweated and slept in interrupted spurts, when I couldn't eat for days, when I couldn't move or look at my body out of the sheer shock of how I'd been cut apart, when I felt incessantly woozy, itchy, and nauseated from pain killers that seemed to be failing miserably at their job, when I watched my mother crack under the stress of it all.
When my life was saved.
Why, in the face of all this, is it so hard to remember that all of that was in service of making sure I'm still here on this planet?
I'm realizing more and more that this has all been very traumatic for me, as melodramatic as I feel using that word, and I am reminded of my first oncologist's warning that many patients emerge from treatment with symptoms of trauma. I'm not diagnosing myself as such, but trying to lend validity (for myself) to the way I feel.
I think a lot about all the things I should do now that I know my time on this planet could have been so brief, but I've gained at least a few more years. And then I get so fucking scared about how I might still not be long for this earth and I can't seem to move. I fantasize about travel and making art, about parenting and creating some beautiful thing that announces that I've been through some shit but I came out the other end and I love my very precious life. And then, in the way one's heart will steel itself in advance of known loss, I retreat-just a little-afraid to love my own life, lest I lose it too soon.
This is my new work- to take this fear and know it, name it, own it, and set aside, to assure myself that it doesn't belong here. Not anymore.
A day or two later, my mom drove me out to the scrap lot where my car had been towed to collect a few belongings from the car (title, books, etc.). I froze up as soon as we found the car, looking at the twisted heap of metal in the daylight put a new perspective on what I'd walked away from. My mother cried, terrified at the carnage before her. It had been easier in the immediacy of the accident to think of other things, to let shock do its job. And so it was when I walked up to the sliding glass doors and expansive lobby of the University of Michigan Cancer Center.
The drive was easy, light on the traffic and just rushed enough that I was preoccupied with the time, racing to be less late. Frantic, I tapped the steering wheel waiting impatiently for traffic lights to turn, made my up the winding Medical Center Drive and parked near the entrance to the University of Michigan Cancer Center. Six months and three days from the last time I walked into this hospital. Six months, three days, and one hour from when my surgeon came to me to say he wasn't sure he could save the dying tissue on my chest, when I sobbed to nurses and begged them to wait just a little longer so I could at least see Jason before going in for emergency surgery. Six months, three days, and two hours from the moment my surgeon had been pulled from the operating room, abandoning another patient, to evaluate me. Six months was not enough time.
Every step toward the door tightened a vice on my chest, pushed harder and harder on tears eager to burst from their ducts. What a mess. Unconsolable, I steadied my quavering voice as best I could while I answered intake questions. I left my forms at the front desk to try to settle my nerves in the bathroom, only to return for them and jettison myself into the same weepy, shaky state in which I'd entered the medical office.
A nurse practitioner and surgeon each did a physical exam, and arrived at the same verdict: my scars are healing nicely, I am healthy, there is no suspicion of more cancer in my lymph nodes, left breast, or on the chest wall - all clear. Safe, right? But all I could think was that I wanted to leave. My eyes dove for the exit door again and again. I wanted to be away from this place because even in the face of very good news, I cannot seem to associate this building with anything but loss and the agony that was those unsure days after my first surgery, when I sweated and slept in interrupted spurts, when I couldn't eat for days, when I couldn't move or look at my body out of the sheer shock of how I'd been cut apart, when I felt incessantly woozy, itchy, and nauseated from pain killers that seemed to be failing miserably at their job, when I watched my mother crack under the stress of it all.
When my life was saved.
Why, in the face of all this, is it so hard to remember that all of that was in service of making sure I'm still here on this planet?
I'm realizing more and more that this has all been very traumatic for me, as melodramatic as I feel using that word, and I am reminded of my first oncologist's warning that many patients emerge from treatment with symptoms of trauma. I'm not diagnosing myself as such, but trying to lend validity (for myself) to the way I feel.
I think a lot about all the things I should do now that I know my time on this planet could have been so brief, but I've gained at least a few more years. And then I get so fucking scared about how I might still not be long for this earth and I can't seem to move. I fantasize about travel and making art, about parenting and creating some beautiful thing that announces that I've been through some shit but I came out the other end and I love my very precious life. And then, in the way one's heart will steel itself in advance of known loss, I retreat-just a little-afraid to love my own life, lest I lose it too soon.
This is my new work- to take this fear and know it, name it, own it, and set aside, to assure myself that it doesn't belong here. Not anymore.
Saturday, February 9, 2013
the ups and ons
It's hard to believe I didn't update when I finished chemo, because that felt like a serious milestone, because that was a big milestone. In the mean time there has been some good and some bad that I won't go into here.
I'm starting to not be able to keep up with the blog, so I think I'm going to set it aside for a while (something I've already been doing gradually). I think once spring rolls around and I'm starting reconstructive surgery and there is more consistent sunshine, I'll be better about updating. Right now most of my energy and creativity is sapped by the classroom. I get to this blank page and the thought of filling it with the sort of writing anyone might want to read seems impossible. Currently, I'm working an average of ten hours a day and still doing work on the weekends and still waiting for the last round of chemo meds to run their course - getting back to a normal energy level is a ways off and presently, this job and putting decently healthy dinners on the table is about all I can accomplish. I get to the weekend feeling pretty beat and needing lots of rest. The good thing is that I do rest. The bad thing is that I might be over-working myself, just a little. The positive rationale for doing so is that everyone at my current (temporary) job seems very intent on helping me find a permanent one and I have an interview coming up this Friday.
I don't think I want to write much about my last chemo treatment because I won't give it its due. It was an amazing feeling and a good friend shared the whole day with me, laughing and keeping things positive, and if I write about it now, it'll come off as a list of minor events culminating in the mediocre telling of a major life event. I don't want to do that.
Weird side effect of the chemo that is just starting - my fingernails are separating from the skin beneath them that keeps each one attached to the ends of my fingers. I am unnerved by this process. I'm trying to be gentle with my hands and I'm not prodding at them or anything, but every time I look at my fingers the white tip of my nail has grown, reaching further and further toward the nail bed. I'm not sure how to react. It isn't gross yet, but it seems to be headed that way - the slow progression to a fairly insignificant, but uncomfortable, strange, and socially semi-repugnant end result of being a person in the world with NO FINGERNAILS. ew. Also, how long before they grow back? Will the grow back in a weird way? What does one do to protect that newly unearthed, tender pink flesh where there ought to be nice, hard nails? I have a lot of questions. Which brings me to another thing (sorry to be so disjointed) - perspective. While losing my fingernails might normally seem like a huge ordeal, and it is definitely of concern, I keep thinking I have to remind you as I type that I realize that this is not actually a very big deal. Because it isn't. And because all sorts of things that once seemed like a big deal will probably not ever seem like such a big deal again. Because I've been through chemo, and even that was a much easier round than many people endure. And I'm here. And I'm pretty sure I'm not going anywhere. The purpose behind the chemo is sinking in again. I think I trust it. And I'm ready to keep going.
Thank you, dear few readers. It's meant a lot to me that you have bothered to read my rambling, bumbling, and frequently depressive ranting. For now, I'm going to turn myself over to a different kind of healing, focus on putting together my new normal, reassemble a social life, and adjust to the slow cancer battle - the one that is long-term and about lifestyle and a little daily pill.
Check back in the spring!
much love.
I'm starting to not be able to keep up with the blog, so I think I'm going to set it aside for a while (something I've already been doing gradually). I think once spring rolls around and I'm starting reconstructive surgery and there is more consistent sunshine, I'll be better about updating. Right now most of my energy and creativity is sapped by the classroom. I get to this blank page and the thought of filling it with the sort of writing anyone might want to read seems impossible. Currently, I'm working an average of ten hours a day and still doing work on the weekends and still waiting for the last round of chemo meds to run their course - getting back to a normal energy level is a ways off and presently, this job and putting decently healthy dinners on the table is about all I can accomplish. I get to the weekend feeling pretty beat and needing lots of rest. The good thing is that I do rest. The bad thing is that I might be over-working myself, just a little. The positive rationale for doing so is that everyone at my current (temporary) job seems very intent on helping me find a permanent one and I have an interview coming up this Friday.
I don't think I want to write much about my last chemo treatment because I won't give it its due. It was an amazing feeling and a good friend shared the whole day with me, laughing and keeping things positive, and if I write about it now, it'll come off as a list of minor events culminating in the mediocre telling of a major life event. I don't want to do that.
Weird side effect of the chemo that is just starting - my fingernails are separating from the skin beneath them that keeps each one attached to the ends of my fingers. I am unnerved by this process. I'm trying to be gentle with my hands and I'm not prodding at them or anything, but every time I look at my fingers the white tip of my nail has grown, reaching further and further toward the nail bed. I'm not sure how to react. It isn't gross yet, but it seems to be headed that way - the slow progression to a fairly insignificant, but uncomfortable, strange, and socially semi-repugnant end result of being a person in the world with NO FINGERNAILS. ew. Also, how long before they grow back? Will the grow back in a weird way? What does one do to protect that newly unearthed, tender pink flesh where there ought to be nice, hard nails? I have a lot of questions. Which brings me to another thing (sorry to be so disjointed) - perspective. While losing my fingernails might normally seem like a huge ordeal, and it is definitely of concern, I keep thinking I have to remind you as I type that I realize that this is not actually a very big deal. Because it isn't. And because all sorts of things that once seemed like a big deal will probably not ever seem like such a big deal again. Because I've been through chemo, and even that was a much easier round than many people endure. And I'm here. And I'm pretty sure I'm not going anywhere. The purpose behind the chemo is sinking in again. I think I trust it. And I'm ready to keep going.
Thank you, dear few readers. It's meant a lot to me that you have bothered to read my rambling, bumbling, and frequently depressive ranting. For now, I'm going to turn myself over to a different kind of healing, focus on putting together my new normal, reassemble a social life, and adjust to the slow cancer battle - the one that is long-term and about lifestyle and a little daily pill.
Check back in the spring!
much love.
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