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.
Wednesday, December 3, 2008
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.
Wednesday, July 9, 2008
Six Months....All Clear
Today I had my first official post-cancer checkup with Dr. B. and I remain NED (no evidence of disease). Go body! I know we said we were done with the blog, but for those of you who still sneak back to see if we maybe said something else, I'll still post about the big medical checkups.
The cancer statistics for recurrence and survival take the 'definitive surgery' as the post-cancer starting point. So even though I feel like my post-cancer journey started in April, after the final surgery, I am officially 6 months out. I really can't imagine how people who do chemo after their mastectomies feel about the starting point - I certainly wouldn't feel 'post-cancer' if I were still bald and having bucket days. I have a hard enough time accepting radiation as cancer free time.
The transition back from my cancer adventure has been much harder than I imagined. This makes me pretty grumpy: since I had 13 days from diagnosis to chemo at the beginning, I feel like it would be fair if I only needed two weeks to transition back. Thank heavens I am an academic and get summer vacation - I have really needed the time to get my head (and heart) around everything that happened to me this year.
An example - I cry instantly, without warning, and seemingly without (specific) cause. Now this could be because a) I spent a year facing my own mortality and am dealing with the emotional aftermath that I didn't have time for while I was busily trying not to die, b) I got hacked into, had bits removed, was irradiated, poisoned, lost 15 pounds, and I have no remaining physical reserves, c) I have no estrogen, and am newly in menopause with all the emotional volatility that implies, d) the medicine I am taking to prevent a recurrence makes my joints hurt which keeps me from sleeping very well, so I am seriously overtired, or e) my joints hurt all the time, and my pectoral muscle adhered to my ribs so moving my arm hurts, and not being able to reach down and put on my own socks gets very frustrating. No matter which explanation - or combination - holds true, I am still pissed off because it is further evidence that I am not better yet, don't have control of my body yet, and because I WON, dammit. The rules are: you win, everyone cheers, and you go home and feel better. I am scared to death that even if the cancer doesn't come back - and, oh yes, I am afraid of it coming back - I am still going to hurt all the time, forever. I can accept that I had to have a mastectomy to get the cancer out, and I can accept that the reconstruction didn't work so I look very different. What I didn't anticipate, and didn't expect, was that the mastectomy site would continue to hurt and that I wouldn't get my full mobility back. Every time I reach for a coffee cup, use a paintbrush, or take a deep breath I can feel the painful stretch across my ribcage. Just a teeny, constant reminder of the cancer. But how do I stomach complaining that I hurt when my chemo-buddy, the woman who showed me the ropes, soothed my fears, and taught me about bravery and grace in the face of cancer, she died while I lived.
Clearly, I haven't put this experience behind me yet. I do know things will get better, but this transition has been difficult. I also haven't lost sight of how unbelievably lucky I continue to be - when the joint pain started we thought it was cancer in my bones. Do I wish I didn't hurt? Absolutely. Would I choose pain over death? Duh. But I still cry at nothing.
The cancer statistics for recurrence and survival take the 'definitive surgery' as the post-cancer starting point. So even though I feel like my post-cancer journey started in April, after the final surgery, I am officially 6 months out. I really can't imagine how people who do chemo after their mastectomies feel about the starting point - I certainly wouldn't feel 'post-cancer' if I were still bald and having bucket days. I have a hard enough time accepting radiation as cancer free time.
The transition back from my cancer adventure has been much harder than I imagined. This makes me pretty grumpy: since I had 13 days from diagnosis to chemo at the beginning, I feel like it would be fair if I only needed two weeks to transition back. Thank heavens I am an academic and get summer vacation - I have really needed the time to get my head (and heart) around everything that happened to me this year.
An example - I cry instantly, without warning, and seemingly without (specific) cause. Now this could be because a) I spent a year facing my own mortality and am dealing with the emotional aftermath that I didn't have time for while I was busily trying not to die, b) I got hacked into, had bits removed, was irradiated, poisoned, lost 15 pounds, and I have no remaining physical reserves, c) I have no estrogen, and am newly in menopause with all the emotional volatility that implies, d) the medicine I am taking to prevent a recurrence makes my joints hurt which keeps me from sleeping very well, so I am seriously overtired, or e) my joints hurt all the time, and my pectoral muscle adhered to my ribs so moving my arm hurts, and not being able to reach down and put on my own socks gets very frustrating. No matter which explanation - or combination - holds true, I am still pissed off because it is further evidence that I am not better yet, don't have control of my body yet, and because I WON, dammit. The rules are: you win, everyone cheers, and you go home and feel better. I am scared to death that even if the cancer doesn't come back - and, oh yes, I am afraid of it coming back - I am still going to hurt all the time, forever. I can accept that I had to have a mastectomy to get the cancer out, and I can accept that the reconstruction didn't work so I look very different. What I didn't anticipate, and didn't expect, was that the mastectomy site would continue to hurt and that I wouldn't get my full mobility back. Every time I reach for a coffee cup, use a paintbrush, or take a deep breath I can feel the painful stretch across my ribcage. Just a teeny, constant reminder of the cancer. But how do I stomach complaining that I hurt when my chemo-buddy, the woman who showed me the ropes, soothed my fears, and taught me about bravery and grace in the face of cancer, she died while I lived.
Clearly, I haven't put this experience behind me yet. I do know things will get better, but this transition has been difficult. I also haven't lost sight of how unbelievably lucky I continue to be - when the joint pain started we thought it was cancer in my bones. Do I wish I didn't hurt? Absolutely. Would I choose pain over death? Duh. But I still cry at nothing.
Subscribe to:
Posts (Atom)
