I've heard from many of you that you want an update - how am I doing? How are things now? The short answer is, I am well. The cancer hasn't recurred. My sense of self has come back, for the most part. But, especially at this time of year, I feel echoes of three years ago.
Three years ago this morning, I woke up knowing that in just a few hours I would be caught up in the medical machinery of surgery - the gowns and IVs, the businesslike bravery expected of patients, the paperwork and formal rituals of permission. And I knew that the next time I woke up would be in recovery, with bags of saline where my breasts had been. My memories are faded now, with certain moments standing in to represent the day.
I remember waking in my bedroom, it was still dark, and chilly. I sat up, and the reality of it all - the cancer, the surgery, the changes - all hit me at once. In a moment, though, the inevitability of it all settled in, and I brushed those quick tears away.
I remember seeing myself whole for the last time, in the shower. I wasn't worried about losing my breasts and looking normal as much as I was just...attached to a part of me. Those tears went with the water, and I hardly felt them.
I remember being in the car in front of the hospital, in the moment before committing - once I opened my door, the process would take over. My mother had reminded me the night before that by the end of this day, I wouldn't have cancer anymore. I concentrated on her words, her voice as she said them - the hope, and the excitement - and opened the door.
I remember the funny busy-ness of the prep, all of which felt so unreal. I remember Dr. S's cool hands on my chest as she marked out the territory with a Sharpie. I remember fighting with the nurses to let me keep my wedding ring on while I was in surgery - a way to hold love in my hand, and a way to not be completely naked and unprotected.
I remember the last few minutes, alone with Zack, before they wheeled me off, a space of safety carved out of a frightening day.
I remember waking up, groggy, feeling like I'd done a zillion chest presses before being wrapped in an iron band. It hurt to breathe, nausea and tightness and pain all inextricable, and too much for my drug-fogged mind to tease apart.
I remember my parents, standing in the doorway of my room, lit from behind by the light of the hall. They just wanted to see me - to assure themselves that no matter what had happened to me, I remained.
Many of these feelings rstay with me, even now. In quiet moments, I'll sometimes be startled by the enormity of it all - the loss, and the fear, and the hurt - but the routines of everyday life soon damp it back down and I go on. I'll sometimes pause, wishing I could just have a little more time to come to grips with things, but I know that a day will pass in 24 hours, no matter what happens in that day. And I can do anything for 24 hours. I still find myself reaching for strength, for support, and my choice to finish my doctorate - and the isolation that requires - sometimes resonates with the sense of overwhelming aloneness and vulnerability cancer treatment could create.
The treatment I am on now - the hormone therapy to keep any residual cancer at bay - is easy, relative to the chemo, surgery, and radiation I went through three years ago. At the same time, it is difficult in a different way. It is constant, and permanent, and irritating, and must be integrated with my regular life. The medicine accelerates the processes of age - wrinkling, aches and pains, insomnia, difficulty putting on muscle mass, etc. The inevitable emotional transition from being a young, desirable woman to being a middle aged, invisible woman is inextricably linked in my mind to the cancer and surgical de-sexing that I went through. Veterinarians call it "altering", and I do feel, in many ways, altered. I know that this is where I should say something enlightened about creating my own sense of sexy youth, that femininity is inside not outside, and that cancer survivors can be cancer vixens, too. But even this, that I know what the "proper" response is but can't seem to make myself have it, in some ways complicates my feelings about the whole matter. Besides, I have never liked pink.
The transition from patient-to-person has been hard (though, it is an extraordinarily nice problem to have). I'm often skeptical of good things - that they will last, or that there isn't a nasty surprise buried inside. I'm easily tired, I ache, and have physical limitations that I need to work around, all of which can be frustrating. I find myself feeling alone and isolated. And, I am very, very tired of trying to find shirts that fit.
But here I am, in 2010, past the halfway mark on the journey to 5-year survival. That I'll be OK, that I will *live*, gets more real with every milestone. In many ways, the troubles I've had are all repurcussions of taking on the mantle of an everyday, ordinary life in all its unpredicatable joy.
So, again, in short, I am well. I am working at a job I enjoy. I am finishing a dissertation that...I will finish. I have family and friends to love. Zack is happy in his new profession. Mostly, I get up every day and do what needs doing, look for joy where I can, and make things work. Like anyone does. Because a post-cancer life is an ordinary life, with everything that means. If you would think of me today, do so by remembering what you live for, and what gives you joy.
Friday, December 3, 2010
Wednesday, December 3, 2008
Year One
I just received flowers celebrating the one-year anniversary of being cancer-free. Thank you.
It has been a long, crazy year. Of course, I was still having radiation and more surgeries until May, so it hasn't all been a vacation. Looking back at my experience of the year, it hasn't been a smooth recovery either physically or emotionally. But, adjusting to - ahem - a mortality concern feels a lot like learning any other new skill or way of thinking. At first it was overwhelming, and everything I did I perceived through that filter. Then it was frustrating. I couldn't escape, and I still had (have) residual physical pain. Now I am working at integrating my new experiences with what came before. By the way, I can tell you from insider experience that those people who say their lives completely change after cancer and nothing from the past matters? They must have better drugs than me because in my experience, the things from the past just get colored by the new reality, not erased. (If you find out what those drugs are, please ship a box to my address. Next day air.)
The most positive part of this year has been the huge changes in my family dynamic, particularly around cancer. My siblings and cousins are being tested for the gene that made me so vulnerable to cancer, making sure that my generation won't get sucker-punched again. This has already paid huge dividends. My mom is recovering from a double mastectomy to remove a very early stage cancer, one that would have been found in a few years - and have been much more advanced - under normal screening procedures. My cancer was the size of a lime, hers the size of a grain of rice. She needs no chemo, no radiation, and we never have to worry again about her dying of breast cancer.
I've noticed that many people with cancer struggle with the purpose of it. Is it punishment? A test? A lesson? A trial? Lots of people look to a divinity, or to the universe, for answers. But I already see the payoff of my experience in my mom's diagnosis and my relatives' testing and screening. I can't have children, but I have given something precious to the next generation: knowledge. My mom will see her grandchildren grow up, and they will get her love and presence as part of the bedrock of their world. Caty, Jim, my cousins, they all will know for certain whether they have the mutation and will get access to the screening and prevention they need to protect themselves. More than this, though, we talk to each other a lot. We call, and message, and email, and send pictures, and generally stay in touch. We're not just related, we're family.
On the more negative side, though, I'm still feeling a stew of uncertainty, physical pain, emotional exhaustion, and a dollop of regret. As my horizon creeps forward, I must make choices and plans but all of my prior bases for decision have been blown away. In some ways, I have already done the most important thing I will ever do - I protected my friends and loved ones by being an example. What do I do now?
I suppose that is a question for year two.
Thank you again for everything. I couldn't be here without you.
It has been a long, crazy year. Of course, I was still having radiation and more surgeries until May, so it hasn't all been a vacation. Looking back at my experience of the year, it hasn't been a smooth recovery either physically or emotionally. But, adjusting to - ahem - a mortality concern feels a lot like learning any other new skill or way of thinking. At first it was overwhelming, and everything I did I perceived through that filter. Then it was frustrating. I couldn't escape, and I still had (have) residual physical pain. Now I am working at integrating my new experiences with what came before. By the way, I can tell you from insider experience that those people who say their lives completely change after cancer and nothing from the past matters? They must have better drugs than me because in my experience, the things from the past just get colored by the new reality, not erased. (If you find out what those drugs are, please ship a box to my address. Next day air.)
The most positive part of this year has been the huge changes in my family dynamic, particularly around cancer. My siblings and cousins are being tested for the gene that made me so vulnerable to cancer, making sure that my generation won't get sucker-punched again. This has already paid huge dividends. My mom is recovering from a double mastectomy to remove a very early stage cancer, one that would have been found in a few years - and have been much more advanced - under normal screening procedures. My cancer was the size of a lime, hers the size of a grain of rice. She needs no chemo, no radiation, and we never have to worry again about her dying of breast cancer.
I've noticed that many people with cancer struggle with the purpose of it. Is it punishment? A test? A lesson? A trial? Lots of people look to a divinity, or to the universe, for answers. But I already see the payoff of my experience in my mom's diagnosis and my relatives' testing and screening. I can't have children, but I have given something precious to the next generation: knowledge. My mom will see her grandchildren grow up, and they will get her love and presence as part of the bedrock of their world. Caty, Jim, my cousins, they all will know for certain whether they have the mutation and will get access to the screening and prevention they need to protect themselves. More than this, though, we talk to each other a lot. We call, and message, and email, and send pictures, and generally stay in touch. We're not just related, we're family.
On the more negative side, though, I'm still feeling a stew of uncertainty, physical pain, emotional exhaustion, and a dollop of regret. As my horizon creeps forward, I must make choices and plans but all of my prior bases for decision have been blown away. In some ways, I have already done the most important thing I will ever do - I protected my friends and loved ones by being an example. What do I do now?
I suppose that is a question for year two.
Thank you again for everything. I couldn't be here without you.
Monday, November 10, 2008
Alter Egos, Mixed Feelings (or, Cancer, Leave Us Alone)
First: I remain free of evidence of any new cancer.
The world, though, seems to be covered in pink and cancer keeps coming up as a topic everywhere. I just can't get away from it.
Is it fair that I love the incredible community action around breast cancer, but absolutely hate going to the grocery store in October? Bags, mugs, shirts, hair things, yogurt, soup...if I wanted I could go a month wearing, using, and eating nothing but pink be-ribboned products. I am passionate about breast cancer awareness, early mammograms for everyone, gene testing for families with a history of cancer, and comprehensive prevention. But, jeez, leave me alone for a week! When a bored checker at Jewel asked if I wanted to donate, nodding to a construction paper-wrapped soup can next to the credit card machine, I nearly replied that I'd already given two 34Cs to the cause, but bit my tongue just in time. And the radio ads - gah! And a political advertisement that made me incandescently angry, so angry I voted against the candidate. The photo on the front of the card showed a father in a tux walking a faded-out bride down the aisle. The text read something like (in my fury, I shredded it), 'A father's dream is to walk his daughter down the aisle. But what if breast cancer took her before he could? Candidate X voted against funding mammograms...vote for me instead'. If my father had received that card! Thoughtless, cheap, emotional manipulation. Grump, grump, mutter, mutter.
We had appointments at a new dentist this week, which meant I faced the inevitable new patient paperwork. I dutifully checked all of the new boxes - yes to cancer, yes to surgeries (how many was it, Zack, 4? No, 5, there was the port surgery. Right, I had nearly managed to forget that moment where I came out of the anaesthetic-induced memory loss and remembered I had CANCER, I am so glad the dentist appointment reminded me of that), yes to radiation, write in chemo, list the meds. Not fun, but I expected that little, prickly reminder of my fabulous year of fun and prizes. During the appointment, though, the dentist asked if the cancer was genetic (nod), because it runs in his family and he is worried about his daughters but they refuse to be tested. Well, doc, (scrape, swish, Mr. Thirsty), if it runs in your family, you could be tested first. If you are negative, they can't have it either. (Turn your head, please. Perfect.) If you are positive, they will know exactly which mutation to look for, making the test about a tenth the cost. (Just a little polishing now.) The dentist vowed to get tested at his next doctor's appointment, and I knew I had done a good thing. "Way to go, Cancer Girl," offered Zack, hanging a name on what we'd both noticed as my alter ego.
Over the weekend, we saw a play with friends. A sub-plot involved a little boy dying of consumption. (Ever notice how many movies and TV shows have cancer as a plot point? A crapload.) At the end, the townspeople gathered by the grave, and the main character gave a speech. Let us remember this death, to remind us to be good, to be kind, even if we go out into the world and do great things let us always remember this moment of fellow-feeling. It went on for ten minutes, while the cute children looked misty before they clasped hands and walked off into the fade-to-black. But what about the kid? I wanted to stand up and yell. How nice for you, to have your lives transformed by this catalyst, to go out in the world and be better for knowing him. Ilyushin is still dead! What did he get out of this deal? What if I don't want to be Cancer Girl? I wanted a kid, and a career, and a long future with my beloved, and instead I get to inspire dentists to get BRCA tests!
And, now, we come to the real reason I am so overwhelmed. Two weeks ago, Zack and I went with his cousin to the Mayo Clinic as support troops while she had her mastectomy. N did great - she was up and lively by the first evening, in great spirits, and is healing well. What got me was her roommate - double mastectomy with axillary dissection staged at 3C. She looked so...broken. So fragile, and sick, and hurting. So tired. She was obviously well-loved and well-supported, she had constant visitors. In a quiet moment, I introduced myself. "Will I be as skinny as you, when I finish?" she asked, wistfully. "Not everyone gets fat from the chemo", I replied. (I carefully avoided discussing bucket days). "How are you, now?" she finally asked. I held out my arms and smiled for her inspection, saying, "I was in that bed a year ago". "I can't believe it," she breathed. Neither can I. But the world doesn't seem to want me to forget it, either.
The world, though, seems to be covered in pink and cancer keeps coming up as a topic everywhere. I just can't get away from it.
Is it fair that I love the incredible community action around breast cancer, but absolutely hate going to the grocery store in October? Bags, mugs, shirts, hair things, yogurt, soup...if I wanted I could go a month wearing, using, and eating nothing but pink be-ribboned products. I am passionate about breast cancer awareness, early mammograms for everyone, gene testing for families with a history of cancer, and comprehensive prevention. But, jeez, leave me alone for a week! When a bored checker at Jewel asked if I wanted to donate, nodding to a construction paper-wrapped soup can next to the credit card machine, I nearly replied that I'd already given two 34Cs to the cause, but bit my tongue just in time. And the radio ads - gah! And a political advertisement that made me incandescently angry, so angry I voted against the candidate. The photo on the front of the card showed a father in a tux walking a faded-out bride down the aisle. The text read something like (in my fury, I shredded it), 'A father's dream is to walk his daughter down the aisle. But what if breast cancer took her before he could? Candidate X voted against funding mammograms...vote for me instead'. If my father had received that card! Thoughtless, cheap, emotional manipulation. Grump, grump, mutter, mutter.
We had appointments at a new dentist this week, which meant I faced the inevitable new patient paperwork. I dutifully checked all of the new boxes - yes to cancer, yes to surgeries (how many was it, Zack, 4? No, 5, there was the port surgery. Right, I had nearly managed to forget that moment where I came out of the anaesthetic-induced memory loss and remembered I had CANCER, I am so glad the dentist appointment reminded me of that), yes to radiation, write in chemo, list the meds. Not fun, but I expected that little, prickly reminder of my fabulous year of fun and prizes. During the appointment, though, the dentist asked if the cancer was genetic (nod), because it runs in his family and he is worried about his daughters but they refuse to be tested. Well, doc, (scrape, swish, Mr. Thirsty), if it runs in your family, you could be tested first. If you are negative, they can't have it either. (Turn your head, please. Perfect.) If you are positive, they will know exactly which mutation to look for, making the test about a tenth the cost. (Just a little polishing now.) The dentist vowed to get tested at his next doctor's appointment, and I knew I had done a good thing. "Way to go, Cancer Girl," offered Zack, hanging a name on what we'd both noticed as my alter ego.
Over the weekend, we saw a play with friends. A sub-plot involved a little boy dying of consumption. (Ever notice how many movies and TV shows have cancer as a plot point? A crapload.) At the end, the townspeople gathered by the grave, and the main character gave a speech. Let us remember this death, to remind us to be good, to be kind, even if we go out into the world and do great things let us always remember this moment of fellow-feeling. It went on for ten minutes, while the cute children looked misty before they clasped hands and walked off into the fade-to-black. But what about the kid? I wanted to stand up and yell. How nice for you, to have your lives transformed by this catalyst, to go out in the world and be better for knowing him. Ilyushin is still dead! What did he get out of this deal? What if I don't want to be Cancer Girl? I wanted a kid, and a career, and a long future with my beloved, and instead I get to inspire dentists to get BRCA tests!
And, now, we come to the real reason I am so overwhelmed. Two weeks ago, Zack and I went with his cousin to the Mayo Clinic as support troops while she had her mastectomy. N did great - she was up and lively by the first evening, in great spirits, and is healing well. What got me was her roommate - double mastectomy with axillary dissection staged at 3C. She looked so...broken. So fragile, and sick, and hurting. So tired. She was obviously well-loved and well-supported, she had constant visitors. In a quiet moment, I introduced myself. "Will I be as skinny as you, when I finish?" she asked, wistfully. "Not everyone gets fat from the chemo", I replied. (I carefully avoided discussing bucket days). "How are you, now?" she finally asked. I held out my arms and smiled for her inspection, saying, "I was in that bed a year ago". "I can't believe it," she breathed. Neither can I. But the world doesn't seem to want me to forget it, either.
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