I had been working on a post about Quinn's terrible sleep habits lately, but I just can't bring myself to complain about my lack of sleep or my toddler in the wake of Friday's horror. Not yet, not when so many parents are burying their children the week before Christmas.
When I heard the awful news Friday morning, I fought the urge to drive straight to daycare to hold my own little boy. I picked him up early that day, held him extra close, caved to his requests to rock him "mo mo" (more, more) before I put him to bed that night, found so much comfort in his chubby little arms wrapped around my neck.
I'm lucky I don't have to explain any of this to Quinn, don't have to find the right words to talk to a child about something so unspeakable. Because I don't know what I'd say. There are no words.
Like all of us, my heart is broken for Newtown. I am sickened, and saddened, and so angry. It might take me a little while to get back to griping about a toddler who just wants to cuddle in the middle of the night.
Monday, December 17, 2012
Thursday, December 6, 2012
Reflection
Sometimes I surprise myself when I catch my reflection in the mirror in the morning. I don't expect to look so sick, because - for the most part - I don't feel sick. I still wake up expecting to look like I used to, like somehow overnight all of this cancer crap will have just been a bad dream. But then there's my image in the bathroom mirror, reminding me that I'm still in this fight, still getting chemo every three weeks, still facing Stage IV cancer.
People continually tell me how great I look, and I appreciate it. I really do. But there's a process that goes into leaving the house every day so that I don't look like a cancer patient. Somehow, putting on a little blush (and some eyebrows) makes me feel better, almost normal.
I go back and forth in my head about why I wear a wig or even a headscarf most days. On the one hand, I do want to feel normal, and while I realize a scarf doesn't accomplish this, it somehow doesn't scream cancer the way my bald head does. On the other hand, if I'm really kicking cancer's ass, shouldn't I be a poster child for what that looks like, baldness and all? Most days, I'm not that brave. And truth be told, I don't want the sympathy stares.
I have a crop of fuzz on my head, but it's about as thick as the hair on Chris' arms (so, not very thick). But I have very little in the way of eyebrows or eyelashes. My skin has taken on that chemo sallowness that comes at a certain point after so much poison has been pumped through your body. And I have flaky patches of dryness everywhere because chemo sucks the moisture right out of your cells, no matter how much water you drink; living in Arizona probably doesn't help.
So I thought I'd share my process for looking presentable.
I start with this:
Sorry about the scowl. I hadn't had coffee yet.
And a little foundation and blush always helps...
A little eyeliner (to make it look like there are eyelashes) and some mascara to the few hairs still hanging on, and we're almost there!
And a wig and some lipstick...
Ta-da! And while the end result's not bad, I'm really looking forward to having hair again and all that entails - basically, a long-term remission (like twenty years would be nice).
People continually tell me how great I look, and I appreciate it. I really do. But there's a process that goes into leaving the house every day so that I don't look like a cancer patient. Somehow, putting on a little blush (and some eyebrows) makes me feel better, almost normal.
I go back and forth in my head about why I wear a wig or even a headscarf most days. On the one hand, I do want to feel normal, and while I realize a scarf doesn't accomplish this, it somehow doesn't scream cancer the way my bald head does. On the other hand, if I'm really kicking cancer's ass, shouldn't I be a poster child for what that looks like, baldness and all? Most days, I'm not that brave. And truth be told, I don't want the sympathy stares.
I have a crop of fuzz on my head, but it's about as thick as the hair on Chris' arms (so, not very thick). But I have very little in the way of eyebrows or eyelashes. My skin has taken on that chemo sallowness that comes at a certain point after so much poison has been pumped through your body. And I have flaky patches of dryness everywhere because chemo sucks the moisture right out of your cells, no matter how much water you drink; living in Arizona probably doesn't help.
So I thought I'd share my process for looking presentable.
I start with this:
Sorry about the scowl. I hadn't had coffee yet.
And a little foundation and blush always helps...
Eyebrows are also good! Here's one...
And the other... I used to draw them on with pencil, but lately I'm liking a waxy product that I paint on with a brush. So much for chemo making it FASTER to get ready in the mornings. Also, who knew I had make-up skills at all? This is a whole new world for me, and Sephora may or may not be my new favorite store.
A little eyeliner (to make it look like there are eyelashes) and some mascara to the few hairs still hanging on, and we're almost there!
Only takes this many products...
And a wig and some lipstick...
Ta-da! And while the end result's not bad, I'm really looking forward to having hair again and all that entails - basically, a long-term remission (like twenty years would be nice).
Tuesday, November 27, 2012
Thanks
In the spirit of the season, and without getting too mushy on you, I should let you all know what I am most thankful for this year: my dad's margins were clean. His doctors were able to remove all of the cancer. We got the news the day before Thanksgiving, in the midst of a spectacularly chaotic week at my mother-in-law's house. I cried, of course, when I saw my dad's text: "They got it all - all the edges are clear." Suddenly it didn't matter that Quinn hadn't napped in five days or that I'd been tethered to my laptop attempting to work with a clingy toddler pulling the threads of my sweaters loose or that we were trying to prep the house for a 13-person dinner while keeping Quinn out of the pool and away from Grandma's feral cat. My dad was cancer-free. There is nothing like the sense of calm that news brings.
I am also thankful for all of you for reaching out to ask me about my dad, for supporting me when I'm exhausted and scared and running on fumes, for bringing me dinner or calling me to let me cry or texting me pictures of another successful pub crawl that raised more than $1200 for metastatic breast cancer research. I can't say it enough: you guys rock. Thank you.
And I am thankful that I can help answer questions for another young mom who sent me a message last week with the news that she'd been diagnosed with breast cancer. Her little boy is five months old; she had surgery today and will start chemo next month. I hate that anyone else has to go through this, has to cry into their pillow at two in the morning because cancer hit far earlier than it should, has to wonder if they'll get to watch their little boy grow up.
As Chris says anytime I get anxious about this: "You are watching him grow up."And so will this woman, who is also stronger than this damn disease.
Which brings me to what I'm continually thankful for - my boys. Quinn's arms wrapped tight around my neck as he says, "Rock, rock, rock" in the rocking chair before I put him to bed at night. Chris' arms wrapped around my waist in bed at night, as I cry over a woman I didn't know who died of lung cancer in a book I probably shouldn't be reading. Even when I'm at my worst (and holy cow does chemo give new meaning to that phrase: short-tempered, splotchy-faced, eyebrow-less), my boys keep me grounded - even if that means Quinn knocking me over and jumping on my back like I'm his personal trampoline - and remind me what this time of year is all about.
See? Only a little mushy.
I am also thankful for all of you for reaching out to ask me about my dad, for supporting me when I'm exhausted and scared and running on fumes, for bringing me dinner or calling me to let me cry or texting me pictures of another successful pub crawl that raised more than $1200 for metastatic breast cancer research. I can't say it enough: you guys rock. Thank you.
And I am thankful that I can help answer questions for another young mom who sent me a message last week with the news that she'd been diagnosed with breast cancer. Her little boy is five months old; she had surgery today and will start chemo next month. I hate that anyone else has to go through this, has to cry into their pillow at two in the morning because cancer hit far earlier than it should, has to wonder if they'll get to watch their little boy grow up.
As Chris says anytime I get anxious about this: "You are watching him grow up."And so will this woman, who is also stronger than this damn disease.
Which brings me to what I'm continually thankful for - my boys. Quinn's arms wrapped tight around my neck as he says, "Rock, rock, rock" in the rocking chair before I put him to bed at night. Chris' arms wrapped around my waist in bed at night, as I cry over a woman I didn't know who died of lung cancer in a book I probably shouldn't be reading. Even when I'm at my worst (and holy cow does chemo give new meaning to that phrase: short-tempered, splotchy-faced, eyebrow-less), my boys keep me grounded - even if that means Quinn knocking me over and jumping on my back like I'm his personal trampoline - and remind me what this time of year is all about.
See? Only a little mushy.
Tags
family,
support,
thanksgiving
Thursday, November 8, 2012
Shaken
Sorry for the radio silence, guys. Just as I was hitting a happy plateau of life with a chronic illness, I got hit with a double whammy of news that shook me pretty hard. First, a member of my extended family was told she had ovarian cancer and a tumor that looked to be the size of a grapefruit. She had surgery and expected to undergo intense chemo, but got news this week that they were able to remove all of the cancer and she will just need to have her blood monitored for the indefinite future. All of us who know and love her are breathing huge sighs of relief tonight.
Then, last week, I got a phone call that felt nearly equivalent to the one I got last August telling me my cancer had spread - like I had been punched in the gut. My dad called to tell me that a mole he'd had removed from his chest was malignant, even though he'd been told repeatedly it was "probably nothing" - seriously, that phrase should be banned from doctors' offices. It turns out that the spot was melanoma, the most deadly form of skin cancer.
Cancer couldn't just affect me - it had to come after my dad, too?
Yesterday, my dad went in for surgery to have a wider swath of skin around the area removed; his doctors are confident it had not spread and the surgery was sufficient to call him cancer-free. The surgical pathology report in a week and a half will confirm this; I'm trying not to spend all of that time biting my nails.
In all honesty, my dad has probably taken this news better than I have, and I've spent the better part of this week trying to figure out exactly why it hit me so hard, when he has reassured me over and over that his doctors are confident. It isn't just the fear of losing him, but the news also shook up a hornet's nest of emotions I thought I'd laid to rest about my own mortality. I looked at Chris one night last weekend, tears streaming down my cheeks, and said, "I don't want to die of cancer."
"I don't know why you'd think that," he said. "You've beaten this twice."
But my dad's news reminded me that we don't have much control over how or why or who this disease hits, or who will beat it. Now I just have to recalibrate how to be okay with that, but it might take some time for my dust to settle. Please bear with me in the meantime.
Then, last week, I got a phone call that felt nearly equivalent to the one I got last August telling me my cancer had spread - like I had been punched in the gut. My dad called to tell me that a mole he'd had removed from his chest was malignant, even though he'd been told repeatedly it was "probably nothing" - seriously, that phrase should be banned from doctors' offices. It turns out that the spot was melanoma, the most deadly form of skin cancer.
Cancer couldn't just affect me - it had to come after my dad, too?
Yesterday, my dad went in for surgery to have a wider swath of skin around the area removed; his doctors are confident it had not spread and the surgery was sufficient to call him cancer-free. The surgical pathology report in a week and a half will confirm this; I'm trying not to spend all of that time biting my nails.
In all honesty, my dad has probably taken this news better than I have, and I've spent the better part of this week trying to figure out exactly why it hit me so hard, when he has reassured me over and over that his doctors are confident. It isn't just the fear of losing him, but the news also shook up a hornet's nest of emotions I thought I'd laid to rest about my own mortality. I looked at Chris one night last weekend, tears streaming down my cheeks, and said, "I don't want to die of cancer."
"I don't know why you'd think that," he said. "You've beaten this twice."
But my dad's news reminded me that we don't have much control over how or why or who this disease hits, or who will beat it. Now I just have to recalibrate how to be okay with that, but it might take some time for my dust to settle. Please bear with me in the meantime.
Tuesday, October 30, 2012
Making Strides
I spent all weekend recovering from a 3-mile walk. I napped when Quinn napped, went to bed at 9:15 Saturday night, and developed a spasm in my lower back that lasted for two days. At least I wasn't winded during the walk? It's little consolation for how old I'm apparently getting. Let me explain how a noncompetitive morning stroll turned into a total-body workout.
Quinn and I participated in the American Cancer Society's Making Strides 5K walk in Tempe on Saturday morning. My little - and I use the word "little" only because he's young - snuggle monkey insisted on being carried for the first half of the walk. Every time I tried to put him in his stroller, he'd arch his back like it was filled with snakes, or worse - broccoli. When I tried letting him walk beside me, knowing it would slow my pace but thinking it would at least give my upper body a break, he'd sit down in the middle of the road. Chris and I call this his "riot police" move - his whole body goes limp like he's protesting the 1% and resisting arrest. I'd bend down to pick him up again, apologizing to the walkers who almost tripped over us as we broke their strides. All the carrying, wrestling, and bending to pick up my wiggle monster took its toll.
My chest and shoulder muscles were on fire, but I couldn't resist his cheek on my shoulder, even if we were making awful time, even if I was spoiling him rotten. And then my hat blew off in the wind, but I didn't even mind displaying my bald head to the world. I was hugging my little boy - and we were at a cancer walk, after all.
Quinn and I participated in the American Cancer Society's Making Strides 5K walk in Tempe on Saturday morning. My little - and I use the word "little" only because he's young - snuggle monkey insisted on being carried for the first half of the walk. Every time I tried to put him in his stroller, he'd arch his back like it was filled with snakes, or worse - broccoli. When I tried letting him walk beside me, knowing it would slow my pace but thinking it would at least give my upper body a break, he'd sit down in the middle of the road. Chris and I call this his "riot police" move - his whole body goes limp like he's protesting the 1% and resisting arrest. I'd bend down to pick him up again, apologizing to the walkers who almost tripped over us as we broke their strides. All the carrying, wrestling, and bending to pick up my wiggle monster took its toll.
My chest and shoulder muscles were on fire, but I couldn't resist his cheek on my shoulder, even if we were making awful time, even if I was spoiling him rotten. And then my hat blew off in the wind, but I didn't even mind displaying my bald head to the world. I was hugging my little boy - and we were at a cancer walk, after all.
A few coworkers and friends joined us, including Quinn's best friend from daycare, Sydney. We had to pause often for snack breaks. No joke, I think we walked at about a one mile-per-hour pace.
Which was good, because the hour leading up to the walk was intense. Chris was out of town, I had to drop my best friend off at the airport for an early-morning flight prior to the walk, and it was also ASU's homecoming on Saturday, so traffic was a nightmare, even at 7 a.m. I was the team leader for my company's team, but showed up fifteen minutes late because I might have bitten off more than I can chew by promising to meet anywhere with a toddler at 7:30 a.m.
As I was running down Mill Avenue with my bright green stroller and shoeless toddler, trying to catch up with my teammates before the start, a guy in a pink shirt asked me if I was okay. "Just running late," I said. "This'll probably be the most competitive part of my day."
I caught up with my team a couple of blocks up the road; we weren't late for the start, and it probably wouldn't have mattered much anyway, it was such a laid-back event. The guy in the pink shirt came up to me and handed me an extra t-shirt from his team. "Good luck to you," he said, a seriousness in his voice letting me know he wasn't just talking about the walk. This is the shirt he gave me; it was so perfect after the sprint of a morning I'd had...
Monday, October 22, 2012
Scanxiety
The period leading up to a PET scan and the time spent waiting for results are often fraught with what people in cancer-land dub "scanxiety." I don't really know how to describe the feeling except to say you try really hard not to get your hopes up, but there they go, imagining your future - one in which you have hair again and that new house you've been shopping for. One in which you've sat at a sidewalk cafe sipping red wine and fattening yourself up on freshly made pasta in Italy itself, maybe as the Mediterranean breeze blows through that new hair of yours. It's a future in which you teach your little boy how to tie his shoes and cheer him on at his first baseball game. Your hopes take on a mind of their own during this period, and you panic at every thought in which the outcome might not be what you want. I can go on and on about how none of us really knows our future and how important it is to live in the present, but when it's time again for my scans every third month, all those platitudes fly straight out the window.
Last week, as I drove to pick Quinn up from daycare the afternoon after my PET scan, I got a call from my oncologist's office confirming my appointment for the following day. No word about scan results, just a matter-of-fact, all-business call to confirm an appointment. Routine, I'm sure. But it set me off--my heart started racing, my palms got all sweaty on the steering wheel, and I convinced myself that it must mean bad news, since last December, when it had been good news, they'd called and told me over the phone.
I immediately called Chris to see if he could calm me down. "They probably don't even have the results yet," he tried to comfort me. My throat was closing up and I was contemplating how I would pull over on the exit ramp leading from one freeway to another since I was not sure I could safely drive. "Worst case scenario, they've got lots of other drugs they can try," he said. He was right--as usual when it comes to these things--but rational thought isn't at the forefront of my head in the midst of a panic attack.
So when we hung up, I called my oldest friend, Alana, who was in the middle of her own craze trying to pack for a weekend trip with twenty minutes until she had to leave for her flight. Her frenzy took my mind off my own stress and she even made me laugh a bit. I promised her I'd call as soon as I had any news.
Less than a minute after our call ended, my phone rang. It was my oncologist, calling to tell me that my PET scan was completely clear. "They don't see anything," he said.
"Totally clear?" I asked. "There's nothing at all?" I checked again. I wanted to make absolutely certain I'd heard him correctly before I told anyone.
I hugged Quinn extra hard at pick-up that day. "We did it again," I whispered in his ear.
I still have another three months of this chemo cocktail, as my oncologist wants to be absolutely certain this time we knock out each and every one of these cells. But assuming another clean scan mid-January, he'll take me off the chemo component and leave me on the other two maintenance drugs. If our luck continues, this will put me into long-term remission. On the other hand, I'll continue to have scans every three months, so if anything does come up, we'll catch it early again and I'm confident I'll continue to respond well to treatment.
"Totally clear?" I asked. "There's nothing at all?" I checked again. I wanted to make absolutely certain I'd heard him correctly before I told anyone.
I hugged Quinn extra hard at pick-up that day. "We did it again," I whispered in his ear.
I still have another three months of this chemo cocktail, as my oncologist wants to be absolutely certain this time we knock out each and every one of these cells. But assuming another clean scan mid-January, he'll take me off the chemo component and leave me on the other two maintenance drugs. If our luck continues, this will put me into long-term remission. On the other hand, I'll continue to have scans every three months, so if anything does come up, we'll catch it early again and I'm confident I'll continue to respond well to treatment.
Chris and I celebrated our four-year wedding anniversary and my clean scan this weekend. And I feel like I have another lease on life, even if I have to renegotiate this contract every three months. Turns out, I'm a pretty good negotiator.
Monday, October 8, 2012
Enough
I had my fourth round of this new chemo a week ago today. After some adjustments to my side-effect medications - a little less steroid here, a little more anti-nausea there, taking Claritin the night before my Neulasta shot to minimize bone pain (which is apparently caused by a histamine reaction) - and I almost felt like a new person this time around. My side effects were very minimal; I just got hit with some bone pain and fatigue today, but I also went to bed late last night after chasing Quinn all around the train park yesterday so that might have contributed.
One of Chris' friends asked him how we were holding up lately, and I think Chris summed it up well: we're probably not any more tired than if we had a second child. I still have the energy to make it to yoga two or three times a week. I cook dinner about twice as often. I'm still working full-time, although it's nothing compared to Chris' full-time. We're both tired, so I'm not really sure I can blame cancer entirely.
Quinn is nineteen months old now, and has learned how to tell us "no" - always twice, as in "No, no." He continues to be a perpetual motion machine, climbing everything - the back of the couch, the barstools that lead up to the kitchen counter, the higher the better - without fear or hesitation. At the park, only the highest, most-inaccessible-to-moms slides will do. Even better if they're connected by mesh-enclosed footbridges ten feet in the air. It's a good thing that kid's got coordination.
The truth is we're finding our groove in this new reality. Sure, I wish we could go back to the life we had before cancer, but that is not going to happen. We were given a monumental diagnosis that is not leaving our lives anytime soon. We are living with this beast, which doesn't seem like so much of a beast anymore as much as a pest problem. (I should know - I lived in DC for eight years. In one apartment, my cats literally chased the walls because they could hear the rats running around inside them. It's like I was being trained for life wih cancer.)
Soon after my recurrence, other women with Stage IV disease told me they lived their lives normally, pausing for treatment every few weeks and scans every few months. They didn't let cancer rule their lives, and I didn't quite believe them. I was puzzled at their responses to living with chronic illness. One friend said simply, "I've never felt sick." Luckily, neither have I.
Still, I didn't really think it was possible for cancer not to occupy the most space in my brain, but slowly, I've gotten to that point. I'd rather focus on Quinn's antics, meal planning, working on a book proposal, and our travel plans for the holidays. While I miss my hair, this new normal is okay. Today, I feel pretty great, and that's enough.
One of Chris' friends asked him how we were holding up lately, and I think Chris summed it up well: we're probably not any more tired than if we had a second child. I still have the energy to make it to yoga two or three times a week. I cook dinner about twice as often. I'm still working full-time, although it's nothing compared to Chris' full-time. We're both tired, so I'm not really sure I can blame cancer entirely.
Quinn is nineteen months old now, and has learned how to tell us "no" - always twice, as in "No, no." He continues to be a perpetual motion machine, climbing everything - the back of the couch, the barstools that lead up to the kitchen counter, the higher the better - without fear or hesitation. At the park, only the highest, most-inaccessible-to-moms slides will do. Even better if they're connected by mesh-enclosed footbridges ten feet in the air. It's a good thing that kid's got coordination.
The truth is we're finding our groove in this new reality. Sure, I wish we could go back to the life we had before cancer, but that is not going to happen. We were given a monumental diagnosis that is not leaving our lives anytime soon. We are living with this beast, which doesn't seem like so much of a beast anymore as much as a pest problem. (I should know - I lived in DC for eight years. In one apartment, my cats literally chased the walls because they could hear the rats running around inside them. It's like I was being trained for life wih cancer.)
Soon after my recurrence, other women with Stage IV disease told me they lived their lives normally, pausing for treatment every few weeks and scans every few months. They didn't let cancer rule their lives, and I didn't quite believe them. I was puzzled at their responses to living with chronic illness. One friend said simply, "I've never felt sick." Luckily, neither have I.
Still, I didn't really think it was possible for cancer not to occupy the most space in my brain, but slowly, I've gotten to that point. I'd rather focus on Quinn's antics, meal planning, working on a book proposal, and our travel plans for the holidays. While I miss my hair, this new normal is okay. Today, I feel pretty great, and that's enough.
Thursday, October 4, 2012
Awareness
I have mixed emotions about October. I used to love the changing of the air to crisp autumn, the crunch of leaves under my feet, the promise of pumpkins and cider and holidays just around the corner. But it was 104 degrees in Phoenix yesterday, with little relief in sight - not exactly comfort-food weather. I ate room-temperature soup for lunch the other day just to try to get myself in the mood; it didn't quite do the trick.
October also now brings with it a mix of trepidation for me and most other breast cancer survivors I know, as the world seems perpetually draped in pink for these thirty-one days. And it's not the color that turns my stomach in knots, or even the message of awareness blaring nonstop across the public airwaves. There may still be some people whose lives will be saved because they were not paying much attention to breast cancer (it wasn't more than a blip on my radar either before my diagnosis) - and this will be the October that woke them up, made them start paying attention to their bodies.
What irks me and other survivors is the commercialization of a deadly disease. It's the bumper sticker slogans asking us to "Save the Tatas," when this should really be about people's lives. As the month kicks off with football players donning pink ribbons and every other business shelling out pink products in the name of awareness, I am hoping that more and more of these campaigns get beyond the bumper stickers, beyond the hype of awareness. For those of us living with this disease - or beyond it - we are all too aware. Our families and friends are very aware. What we need is a cure, or at the very least, research toward better treatment options.
As I write this, a friend - a woman who has fought and beat Stage IV breast cancer three times already - is in the hospital fighting for her life again. The cancer has spread to her liver. She is 37 years old. When I was still in the throes of grief after learning of my recurrence, I was given this woman's information and told to call her. When we spoke, she told me she firmly believed she was here to encourage other women, to show them they can be stronger than cancer, and that she still has a lot of work left to do in this world. I don't know if she knows how much that conversation lifted me up out of some of my darkest days. She was and is such a beacon of hope for me and every other survivor who knows her. And what she needs is not another reminder dressed in pink, but rather funding for research into metastatic disease and how to stop it in its tracks.
Coincidentally, I had my tenth chemo infusion on Monday, October 1st. In two weeks I'll find out whether this new combination of drugs is working - and how well. As I sat in the green recliner Monday morning, a woman walked up to the nurse's station with tears streaming down her cheeks. She wore a scarf on her head. "Did you hear the news?" she said to one of the nurses. "The cancer is all gone - it's over." Even as I write this, I'm in tears thinking of how elated this survivor was, because I remember very clearly that feeling when I received that phone call last December telling me my cancer was gone.
I want to share just one other story, of a woman I met during my last round of chemo in mid-September. Her triple-negative, inflamattory breast cancer had spread to her muscles and skin, making the whole right side of her upper body immobile. Probably in her mid-50s, she was beautiful, with soft blonde hair and a big smile. She was worried about fitting into a dress for her daughter's wedding in January because treatment had made her gain twenty pounds. And the new treatment she was starting - as a last ditch effor to reduce the cancer so she could be admitted to a clinical trial - was going to make her lose her 17 months of hair growth again. She was upset she'd have to wear a wig to watch her daughter get married. She told me she is in constant pain. The doctors are at a loss, and I got the sense that she was just hoping to make it to January before she let go. While I didn't draw the luckiest card in the deck when it comes to cancer, this woman certainly put things in a new perspective for me. At least my cancer still has promising treatment options.
Painting the town pink - raising awareness - does little to save the more than 40,000 people who will lose their lives this year to breast cancer. Those of us living with this disease are pretty fed up with businesses who use our illness to make money in the name of awareness. But there are a few organizations who do good work - not just in October but throughout the year. They rely on this month to set their fundraising goals for the remaining eleven months. I implore you to do your research when buying a product with a pink ribbon on it - see where the money goes, how much to research new treatments, how much to actual patients who can't afford treatments or preventative care, how much to a business' bottom line.
And use this month as a reminder to be aware - not only of where your money goes but also of your body. It is the best indicator you have, and if something isn't right, you know it best.
October also now brings with it a mix of trepidation for me and most other breast cancer survivors I know, as the world seems perpetually draped in pink for these thirty-one days. And it's not the color that turns my stomach in knots, or even the message of awareness blaring nonstop across the public airwaves. There may still be some people whose lives will be saved because they were not paying much attention to breast cancer (it wasn't more than a blip on my radar either before my diagnosis) - and this will be the October that woke them up, made them start paying attention to their bodies.
What irks me and other survivors is the commercialization of a deadly disease. It's the bumper sticker slogans asking us to "Save the Tatas," when this should really be about people's lives. As the month kicks off with football players donning pink ribbons and every other business shelling out pink products in the name of awareness, I am hoping that more and more of these campaigns get beyond the bumper stickers, beyond the hype of awareness. For those of us living with this disease - or beyond it - we are all too aware. Our families and friends are very aware. What we need is a cure, or at the very least, research toward better treatment options.
As I write this, a friend - a woman who has fought and beat Stage IV breast cancer three times already - is in the hospital fighting for her life again. The cancer has spread to her liver. She is 37 years old. When I was still in the throes of grief after learning of my recurrence, I was given this woman's information and told to call her. When we spoke, she told me she firmly believed she was here to encourage other women, to show them they can be stronger than cancer, and that she still has a lot of work left to do in this world. I don't know if she knows how much that conversation lifted me up out of some of my darkest days. She was and is such a beacon of hope for me and every other survivor who knows her. And what she needs is not another reminder dressed in pink, but rather funding for research into metastatic disease and how to stop it in its tracks.
Coincidentally, I had my tenth chemo infusion on Monday, October 1st. In two weeks I'll find out whether this new combination of drugs is working - and how well. As I sat in the green recliner Monday morning, a woman walked up to the nurse's station with tears streaming down her cheeks. She wore a scarf on her head. "Did you hear the news?" she said to one of the nurses. "The cancer is all gone - it's over." Even as I write this, I'm in tears thinking of how elated this survivor was, because I remember very clearly that feeling when I received that phone call last December telling me my cancer was gone.
I want to share just one other story, of a woman I met during my last round of chemo in mid-September. Her triple-negative, inflamattory breast cancer had spread to her muscles and skin, making the whole right side of her upper body immobile. Probably in her mid-50s, she was beautiful, with soft blonde hair and a big smile. She was worried about fitting into a dress for her daughter's wedding in January because treatment had made her gain twenty pounds. And the new treatment she was starting - as a last ditch effor to reduce the cancer so she could be admitted to a clinical trial - was going to make her lose her 17 months of hair growth again. She was upset she'd have to wear a wig to watch her daughter get married. She told me she is in constant pain. The doctors are at a loss, and I got the sense that she was just hoping to make it to January before she let go. While I didn't draw the luckiest card in the deck when it comes to cancer, this woman certainly put things in a new perspective for me. At least my cancer still has promising treatment options.
Painting the town pink - raising awareness - does little to save the more than 40,000 people who will lose their lives this year to breast cancer. Those of us living with this disease are pretty fed up with businesses who use our illness to make money in the name of awareness. But there are a few organizations who do good work - not just in October but throughout the year. They rely on this month to set their fundraising goals for the remaining eleven months. I implore you to do your research when buying a product with a pink ribbon on it - see where the money goes, how much to research new treatments, how much to actual patients who can't afford treatments or preventative care, how much to a business' bottom line.
And use this month as a reminder to be aware - not only of where your money goes but also of your body. It is the best indicator you have, and if something isn't right, you know it best.
Wednesday, September 26, 2012
Speaking
Here are my opening remarks - please ignore the sniffles; most of those were from the cold ocean air and just a few from actual crying.
And my closing remarks after completing the 39.3-mile walk. Stay tuned for more pictures and musings on an incredible weekend.
And my closing remarks after completing the 39.3-mile walk. Stay tuned for more pictures and musings on an incredible weekend.
Thursday, September 20, 2012
I Think I Can
When people ask, I usually say that the side effects of chemo are like having a hangover, but that doesn't entirely tell the truth of it. Mostly because hangovers don't last for a week. Also, they don't cause mouth sores or hot flashes or fatigue so intense you feel like your limbs are made of concrete. And I never had a hangover that resulted in four days of constipation followed by three days of hoping to make it to the toilet in time not to ruin yet another pair of underwear. Not to mention the pulsating bone pain letting me know the booster shot to my white blood cells is working or the violently dark mood swings brought on by the steroids. It makes for a rough week.
And in the middle of this last round, a few days before my 34th birthday, I remember clearly thinking: I don't know if I'm strong enough to do this. I curled up in a ball, put my forehead on our living room rug and let the tears drip down my nose. It's hard to stay positive when you feel so physically spent.
And then the side effects lift, and I make it to a yoga class and feel strong again and go back to believing I will beat this.
I have always lived my life thinking that anything is possible if you set your mind to it. When I go in for my scans, I visualize clean, healthy cells abundant in my body. During chemo infusions, I picture the cancer exploding like the cockroaches in those Raid commercials. As a kid, "The Little Engine that Could" was one of my favorite bedtime stories. "I think I can, I think I can, I think I can..." That little blue train repeated this phrase over and over again as he climbed until he was suddenly on the other side of the mountain. I couldn't get enough of that triumph.
I still believe in the power of positive thinking and mind over matter. But as my therapist put it: "Right now, your body is telling your mind to fuck off."
So I'm having to learn to respect my body in a way that's new to me instead of relentlessly pushing myself to get things done, cross chores off my list. It drives me crazy to have a pile of unfolded laundry sit on our guest room bed for a week, to not be caught up on emails - in some cases from a month ago; I hope those people forgive me - and to not have updated Quinn's baby book recently. I should do that now instead of writing this. See? It's a compulsion I have to do, do, do.
The other day, a nurse reminded me that even if I do nothing else in a day - not even get off the couch, which I really can't imagine - today I fought cancer, and that's a lot. But just for good measure, tomorrow I'm flying to Santa Barbara to participate in the Avon Walk for Breast Cancer, a 2-day, 39.3-mile event. And then I probably won't be able to get off the couch, which might be okay for a minute or two.
And in the middle of this last round, a few days before my 34th birthday, I remember clearly thinking: I don't know if I'm strong enough to do this. I curled up in a ball, put my forehead on our living room rug and let the tears drip down my nose. It's hard to stay positive when you feel so physically spent.
And then the side effects lift, and I make it to a yoga class and feel strong again and go back to believing I will beat this.
I have always lived my life thinking that anything is possible if you set your mind to it. When I go in for my scans, I visualize clean, healthy cells abundant in my body. During chemo infusions, I picture the cancer exploding like the cockroaches in those Raid commercials. As a kid, "The Little Engine that Could" was one of my favorite bedtime stories. "I think I can, I think I can, I think I can..." That little blue train repeated this phrase over and over again as he climbed until he was suddenly on the other side of the mountain. I couldn't get enough of that triumph.
I still believe in the power of positive thinking and mind over matter. But as my therapist put it: "Right now, your body is telling your mind to fuck off."
So I'm having to learn to respect my body in a way that's new to me instead of relentlessly pushing myself to get things done, cross chores off my list. It drives me crazy to have a pile of unfolded laundry sit on our guest room bed for a week, to not be caught up on emails - in some cases from a month ago; I hope those people forgive me - and to not have updated Quinn's baby book recently. I should do that now instead of writing this. See? It's a compulsion I have to do, do, do.
The other day, a nurse reminded me that even if I do nothing else in a day - not even get off the couch, which I really can't imagine - today I fought cancer, and that's a lot. But just for good measure, tomorrow I'm flying to Santa Barbara to participate in the Avon Walk for Breast Cancer, a 2-day, 39.3-mile event. And then I probably won't be able to get off the couch, which might be okay for a minute or two.
Friday, September 7, 2012
The Universe is Talking to Me
It's funny how themes emerge in my life. Most often, they seem to come in little clusters. Snippets of information repeat themselves a few times in a short span and then - poof! - they're gone. For example, a couple of weeks ago I heard from two different sources in the span of a few days that cooking with olive oil renders it carcinogenic. I cook with olive oil maybe eight times a week, so I was a little worried. Worried enough that I checked with the Livestrong Foundation, whose chief scientist responded, "That's hogwash." And here's the thing. I haven't heard a peep about the cancerous properties of olive oil since.
Sometimes, instead of the this-information-is-curious snippets, the universe bonks me on the head with big, overarching, live-your-best-life-now themes, and occasionally I need to be told more than once. In my high school senior yearbook, we were all asked to choose a quote to accompany our photos. At 17 years-old, I chose: "Every moment is enormous, and it is all we have." This message is ringing especially loudly in my ears lately. The universe - and my husband, almost daily - is telling me to live in the present. It's a theme in friends' Facebook posts and my therapy sessions, my yoga classes and conversations with other survivors about how to cope with the onslaught of emotions that emerge with a chronic illness. I realize this idea is nothing groundbreaking, but it's still an elusive task. I find myself thinking - Okay, now. Now I'm in the present. No, now it's now. Now again. - until I just sound ridiculous even to myself.
*****
Like most toddlers, Quinn is big on routine. His evenings are pretty typical - dinner, bath, a few books, a bottle (still trying to eliminate the bedtime one), and then I usually put him to bed. About a year ago, after repeating them dozens (now hundreds) of times, I memorized "Time for Bed" and "Wynken Blynken and Nod," so now I repeat one or the other to him as I rock him while he finishes his bottle. When he's done, he pushes it away and turns into me, curls up with his head in the crook of my shoulder for just a moment, long enough for me to tell him how much I love him and kiss his forehead a few times. He's old enough now that when I ask if he's ready for bed, he says "Yah," and starts to wriggle out of my arms. I lay him down and - every night - wish him sweet dreams, remind him I love everything about him, and promise him I'll see him in the morning.
Some nights, I'm struggling to hold back tears as I hold my beautiful boy. Would I be this emotional about tucking him in if I'd never had cancer? Do other parents breathe in the scent of their child's hair like it could be the cure they desperately hope is right around the corner?
Balancing the idea of staying in the present with the other common advice from survivors - to continue to look forward, to make plans for the future and set goals - is a constant tightrope walk. My new therapist (a godsend provided free through the Virginia G. Piper Cancer Center) says that anxiety most often arises when we think of the future, whereas melancholy and sadness surface when we're reflecting on the past. So now my task is to look forward without losing sight of the fact that every day - every morning I get to wake up with Chris and Quinn - is a little victory. It's like I knew what I was talking about when I was 17.
Sometimes, instead of the this-information-is-curious snippets, the universe bonks me on the head with big, overarching, live-your-best-life-now themes, and occasionally I need to be told more than once. In my high school senior yearbook, we were all asked to choose a quote to accompany our photos. At 17 years-old, I chose: "Every moment is enormous, and it is all we have." This message is ringing especially loudly in my ears lately. The universe - and my husband, almost daily - is telling me to live in the present. It's a theme in friends' Facebook posts and my therapy sessions, my yoga classes and conversations with other survivors about how to cope with the onslaught of emotions that emerge with a chronic illness. I realize this idea is nothing groundbreaking, but it's still an elusive task. I find myself thinking - Okay, now. Now I'm in the present. No, now it's now. Now again. - until I just sound ridiculous even to myself.
*****
Like most toddlers, Quinn is big on routine. His evenings are pretty typical - dinner, bath, a few books, a bottle (still trying to eliminate the bedtime one), and then I usually put him to bed. About a year ago, after repeating them dozens (now hundreds) of times, I memorized "Time for Bed" and "Wynken Blynken and Nod," so now I repeat one or the other to him as I rock him while he finishes his bottle. When he's done, he pushes it away and turns into me, curls up with his head in the crook of my shoulder for just a moment, long enough for me to tell him how much I love him and kiss his forehead a few times. He's old enough now that when I ask if he's ready for bed, he says "Yah," and starts to wriggle out of my arms. I lay him down and - every night - wish him sweet dreams, remind him I love everything about him, and promise him I'll see him in the morning.
Some nights, I'm struggling to hold back tears as I hold my beautiful boy. Would I be this emotional about tucking him in if I'd never had cancer? Do other parents breathe in the scent of their child's hair like it could be the cure they desperately hope is right around the corner?
Balancing the idea of staying in the present with the other common advice from survivors - to continue to look forward, to make plans for the future and set goals - is a constant tightrope walk. My new therapist (a godsend provided free through the Virginia G. Piper Cancer Center) says that anxiety most often arises when we think of the future, whereas melancholy and sadness surface when we're reflecting on the past. So now my task is to look forward without losing sight of the fact that every day - every morning I get to wake up with Chris and Quinn - is a little victory. It's like I knew what I was talking about when I was 17.
Monday, August 27, 2012
Chemo Fog
Chemo-brain is no-joke, people. I've been trying to compose a post for this space since my infusion on the 17th, and what I wanted to write about had nothing to do with the haze I've been in for ten days now. But this fog has been so thick it was just begging for its own post.
This was my day today, the first hour and thirteen minutes of which are pretty typical for a weekday. Our weekends are driven by the perpetual motion machine that is our son, so there is no time to stop and notice how little my brain is functioning - I'm happy if I can put together a decent grocery list on Sunday.
6:47: I wake up cranky because Chris closed a dresser drawer too loudly and I don't want him to "wake the baby." Chris points out that Quinn's sound machine is still on, and according to the baby monitor, Q hasn't budged. Whatever. I check email in bed because it doesn't require me to lift my head off the pillow.
7:18: Quinn wakes up, and we spend the next 42 minutes in a mad dash making breakfast, bribing Q to finish his waffles by offering him a cloud of canned whipped cream (the waffles are at least multi-grain), putting together something resembling a balanced meal for Q's lunch, getting him dressed while Chris does dishes, and getting them both out the door by 8. Ten minutes after they leave I remember Quinn is out of milk at daycare and we forgot it this morning. It's Monday, so I feel somewhat okay about my shoddy memory.
8:04: I log-in to my work computer. Now that I'm working from home, I don't even bother showering. What? It's not like my hair will get greasy. I do at least change out of my pajamas in case the mailman rings the doorbell. Plus, yoga clothes are more stretchy and comfortable. I tell myself it'll motivate me to go to class later - as in, eight hours later.
For the next hour, I read and respond to emails. It takes me awhile to compose one to a coworker who has donated very generously to my Avon Walk efforts. He lost his wife to breast cancer, so our interactions are emotional for both of us. Because of cancer, I instantly feel a kinship with him. On a side note, I hit $10,000 in my fundraising efforts today. I am overwhelmed by you guys.
9:29: Check Facebook and the Young Survival Coalition board. Send a couple of personal emails. I know, I shouldn't be admitting this publicly. For the next hour, I read through news articles, most of which are totally relevant to my job.
10:47: I decide it's "close enough" to lunchtime and have a couple of slices of leftover pizza. After lunch, I finally open the client file I need to work on this week and read through my notes. And I don't know if it just takes my morning coffee this long to kick in or if it is truly the chemo's fault, but I swear my brain doesn't actually click on until about 12:15. It gets progressively better, so that by about 5:20 my synapses are finally firing and I remember all of the things I wanted to accomplish that day, a good number of which required calls to doctors' offices that closed at 5.
4:15: Yoga. See? Those clothes did come in handy. And yes, I showered after class. Just in case you thought I meant I never showered now that I'm bald. I do - it's just more sporadic now.
7:10: After putting Q to bed, I start on dinner. And you know what? I have to substitute chili sauce for tomato paste and paprika for Old Bay seasoning because my grocery list yesterday was that incomplete.
Tomorrow, I'm having two cups of coffee. We'll see if that helps matters.
This was my day today, the first hour and thirteen minutes of which are pretty typical for a weekday. Our weekends are driven by the perpetual motion machine that is our son, so there is no time to stop and notice how little my brain is functioning - I'm happy if I can put together a decent grocery list on Sunday.
6:47: I wake up cranky because Chris closed a dresser drawer too loudly and I don't want him to "wake the baby." Chris points out that Quinn's sound machine is still on, and according to the baby monitor, Q hasn't budged. Whatever. I check email in bed because it doesn't require me to lift my head off the pillow.
7:18: Quinn wakes up, and we spend the next 42 minutes in a mad dash making breakfast, bribing Q to finish his waffles by offering him a cloud of canned whipped cream (the waffles are at least multi-grain), putting together something resembling a balanced meal for Q's lunch, getting him dressed while Chris does dishes, and getting them both out the door by 8. Ten minutes after they leave I remember Quinn is out of milk at daycare and we forgot it this morning. It's Monday, so I feel somewhat okay about my shoddy memory.
8:04: I log-in to my work computer. Now that I'm working from home, I don't even bother showering. What? It's not like my hair will get greasy. I do at least change out of my pajamas in case the mailman rings the doorbell. Plus, yoga clothes are more stretchy and comfortable. I tell myself it'll motivate me to go to class later - as in, eight hours later.
For the next hour, I read and respond to emails. It takes me awhile to compose one to a coworker who has donated very generously to my Avon Walk efforts. He lost his wife to breast cancer, so our interactions are emotional for both of us. Because of cancer, I instantly feel a kinship with him. On a side note, I hit $10,000 in my fundraising efforts today. I am overwhelmed by you guys.
9:29: Check Facebook and the Young Survival Coalition board. Send a couple of personal emails. I know, I shouldn't be admitting this publicly. For the next hour, I read through news articles, most of which are totally relevant to my job.
10:47: I decide it's "close enough" to lunchtime and have a couple of slices of leftover pizza. After lunch, I finally open the client file I need to work on this week and read through my notes. And I don't know if it just takes my morning coffee this long to kick in or if it is truly the chemo's fault, but I swear my brain doesn't actually click on until about 12:15. It gets progressively better, so that by about 5:20 my synapses are finally firing and I remember all of the things I wanted to accomplish that day, a good number of which required calls to doctors' offices that closed at 5.
4:15: Yoga. See? Those clothes did come in handy. And yes, I showered after class. Just in case you thought I meant I never showered now that I'm bald. I do - it's just more sporadic now.
7:10: After putting Q to bed, I start on dinner. And you know what? I have to substitute chili sauce for tomato paste and paprika for Old Bay seasoning because my grocery list yesterday was that incomplete.
Tomorrow, I'm having two cups of coffee. We'll see if that helps matters.
Thursday, August 16, 2012
Baldilocks
I'd forgotten how much my scalp hurts as my hair starts to go. I'll scratch my head only to come away with several strands under my nails. And I'm reluctant to wash it because so much hair ends up entangled in my fingers. My pillowcase in the mornings is covered in evidence that the chemo is taking effect.
Please, God, let it be killing the cancer as effectively.
*****
In the last couple of weeks, Quinn's language has really taken off. For starters, after months of calling both of us "Dada," he finally, finally said "Mama" last week. I love it, eat it up, ask him to repeat it at least ten times a day. He would rather say airplane, which he pronounces "up-pane," as he points his chubby little finger to the sky. Along with his new vocabulary, he's also really proud of his ability to locate his (and my) ears, nose, mouth, toes, belly and - you guessed it - hair. What will he think when my hair goes "bye-bye"?
Chris took a lint roller to the shirt I was wearing the other day to clean off some stray hairs; a few minutes later we found Quinn rolling the sticky tape over his own clothes, the little monkey. One of my biggest concerns this time around is how he's going to react to his mama being bald. Last fall, he was only six months old and oblivious to my lack of hair. So I asked around, and am reminded again of the fierceness and warmth and beauty of the women who've been through this. The general consensus seems to be that it's easier on kids if they're involved in the process somehow; many women said they let their toddlers draw on their bald heads with washable markers or made the shaving a family event to take some of the scariness away. They reminded me that no matter what I'll still be his Mom.
So instead of hitting the salon again, I've asked Chris to do the honors and shave my head this weekend. Though I'm not sure I'm ready to let Q wield an electric razor, I figure he can watch me get my haircut and hope that will be easier on him than mysteriously waking up to my baldness.
All of this to say I've been pretty emotional this week about losing my hair, in large part because I'd really hoped to be done with this disease before Q started to form any lasting memories. To be clear: I mean I want to be HEALTHY for my son, that kind of "done with this disease," not gone before he has a chance to know me. And how twisted is it that I feel the need to un-jinx myself here, just in case the universe has some cruel shit up its sleeve? This is why I need Ativan, because some tiny part of me wonders if the cancer can actually hear me and has a mind of its own.
*****
I have my second dose of chemo tomorrow morning. God, I hope this is working.
Please, God, let it be killing the cancer as effectively.
*****
In the last couple of weeks, Quinn's language has really taken off. For starters, after months of calling both of us "Dada," he finally, finally said "Mama" last week. I love it, eat it up, ask him to repeat it at least ten times a day. He would rather say airplane, which he pronounces "up-pane," as he points his chubby little finger to the sky. Along with his new vocabulary, he's also really proud of his ability to locate his (and my) ears, nose, mouth, toes, belly and - you guessed it - hair. What will he think when my hair goes "bye-bye"?
Chris took a lint roller to the shirt I was wearing the other day to clean off some stray hairs; a few minutes later we found Quinn rolling the sticky tape over his own clothes, the little monkey. One of my biggest concerns this time around is how he's going to react to his mama being bald. Last fall, he was only six months old and oblivious to my lack of hair. So I asked around, and am reminded again of the fierceness and warmth and beauty of the women who've been through this. The general consensus seems to be that it's easier on kids if they're involved in the process somehow; many women said they let their toddlers draw on their bald heads with washable markers or made the shaving a family event to take some of the scariness away. They reminded me that no matter what I'll still be his Mom.
So instead of hitting the salon again, I've asked Chris to do the honors and shave my head this weekend. Though I'm not sure I'm ready to let Q wield an electric razor, I figure he can watch me get my haircut and hope that will be easier on him than mysteriously waking up to my baldness.
All of this to say I've been pretty emotional this week about losing my hair, in large part because I'd really hoped to be done with this disease before Q started to form any lasting memories. To be clear: I mean I want to be HEALTHY for my son, that kind of "done with this disease," not gone before he has a chance to know me. And how twisted is it that I feel the need to un-jinx myself here, just in case the universe has some cruel shit up its sleeve? This is why I need Ativan, because some tiny part of me wonders if the cancer can actually hear me and has a mind of its own.
*****
I have my second dose of chemo tomorrow morning. God, I hope this is working.
Monday, August 13, 2012
Walking
A dear friend of mine has walked in the Avon Walk for Breast Cancer for a few years running now. She has raised thousands of dollars to support research and access to care for those who need it. And she has logged hundreds of miles to honor those of us fighting this disease.
At some point after my clear PET scan last December, I floated the idea of joining my friend and her team for this year's walk in Santa Barbara. A couple of months ago, I took the plunge and signed up, committing to raise at least $1,800 and walking more than 39 miles over two days the weekend of September 22nd. I got my t-shirt in the mail that says: I AM POWERFUL BOLD PASSIONATE UNSTOPPABLE. Then I got news of my recurrence, realized I'd be on chemo again, and called the folks at Avon to tell them I probably wouldn't be able to participate, although I did wear that t-shirt to my first treatment on this new course of chemo.
But the decision not to walk wasn't sitting right with me. I felt like somehow, if I didn't go through with it, it would be as if I was giving up on my fight altogether. So I sent my friend an email and asked if there was still space on her team. She responded immediately that she'd be honored to have me there with them.
I have less than six weeks to go until this walk, during which I'll have two more rounds of chemo. So I have no idea whether I'll be able to complete all 39 miles, but the good people at Avon have assured me they'll have shuttles available for people who are struggling and medical personnel on hand if anything goes awry. With that safety net in place, and approval from my oncologist to participate, I decided I have to do this.
Here's a link to my participant page, if you'd like to donate to my efforts. I might be crazy, but if stubbornness and determination have anything to do with beating cancer a second time, then I've got this in the bag. As always, thank you all for your continued love and support as I "Wage War on Stage Four," to quote another t-shirt.
At some point after my clear PET scan last December, I floated the idea of joining my friend and her team for this year's walk in Santa Barbara. A couple of months ago, I took the plunge and signed up, committing to raise at least $1,800 and walking more than 39 miles over two days the weekend of September 22nd. I got my t-shirt in the mail that says: I AM POWERFUL BOLD PASSIONATE UNSTOPPABLE. Then I got news of my recurrence, realized I'd be on chemo again, and called the folks at Avon to tell them I probably wouldn't be able to participate, although I did wear that t-shirt to my first treatment on this new course of chemo.
But the decision not to walk wasn't sitting right with me. I felt like somehow, if I didn't go through with it, it would be as if I was giving up on my fight altogether. So I sent my friend an email and asked if there was still space on her team. She responded immediately that she'd be honored to have me there with them.
I have less than six weeks to go until this walk, during which I'll have two more rounds of chemo. So I have no idea whether I'll be able to complete all 39 miles, but the good people at Avon have assured me they'll have shuttles available for people who are struggling and medical personnel on hand if anything goes awry. With that safety net in place, and approval from my oncologist to participate, I decided I have to do this.
Here's a link to my participant page, if you'd like to donate to my efforts. I might be crazy, but if stubbornness and determination have anything to do with beating cancer a second time, then I've got this in the bag. As always, thank you all for your continued love and support as I "Wage War on Stage Four," to quote another t-shirt.
Thursday, July 26, 2012
Insurance
Yesterday morning I was prepared to publish a rant against my insurance company as far and wide as my social networks extend if I didn't get an approval by noon. At 11:15 a.m., I got a call from my oncologist's office that the approval had come through; I started chemo again today. I know I'm lucky to have access to and coverage for the most cutting-edge medicine available. But the last ten days have given me a tiny peek into the window of those who are constantly fighting with insurance (or don't have it at all). It was a scary, dark, infuriating place to be.
I was prepared to beg, fundraise, sell all my clothes on e-Bay, do whatever it took to get this done. But at about $15,000 worth of infusions every three weeks, indefinitely, we were looking at upwards of $225,000 per year out-of-pocket. And even though it FEELS like we pay that much toward my law school loans, our pockets do not run nearly that deep.
Here's what the last ten days have taught me. You MUST be your own advocate. You must demand treatment. You must be relentless, be the biggest pain-in-the-ass your doctor's office and the insurance company have ever seen. Before the approval came in yesterday, I finally told my doctor's office I was going to start treatment today; it was up to them to make it happen, whatever magic wand they had to wave. I learned that you DO NOT GIVE UP.
This experience also got me thinking (again) that if insurance companies started paying for screening earlier and doctors started listening to young women who come in with concerns about their breasts instead of insisting that it must be fibroids or blocked milk ducts, then maybe we could start to really cut down on costly, aggressive treatments for advanced disease. Here are a couple of other women in my camp, reiterating this point.
*****
When you find out you've got cancer, time seems to move as if it's trying to swim through mud. You watch the clock constantly as you wait for answers, wait for treatment, wait for a cure. Because you've been through this before and know how well your cancer responds to chemo, you know how important it is to have the poison that will save your life. You are eager for it. You try to fill your time with phone calls to someone - anyone - who might be able to help.
I found out on Tuesday, July 17th that my cancer had come back. Recurrence is one of the scariest words that exists for people who've had cancer. And amazingly, the sky did not fall; there were no floods, tornadoes, or locusts signaling the end of days. I felt like my world was crashing around me, but the mail still got delivered, clients still scheduled meetings, and a group of people walked into a midnight screening of a movie in Denver never to walk out again. Life -- and its chaotic twists -- kept going.
*****
My doctor's office promised me we'd have an answer from my insurance company about starting chemo within 24-48 hours. It took about eight days longer than that. That's one day longer than it took God to build world and still have one day leftover for resting. Eight days is an eternity in insurance decision limbo land. There is almost not enough Xanax out there to get a person through those excruciating moments. Luckily, I also have a lot of love. My supporters - and the messages of strength they send me - continue to amaze me.
I've got three little masses in my lymphatic system - so not all that bad, as far as Stage IV cancer is concerned, if you can find a silver lining. But I've also got an extremely aggressive cancer (grade 3, HER2+ for those of you who know this stuff). Every day without treatment is another day my cancer had time to grow, evolve, spread its tentacles into the rest of my body. I know I can beat this; I just needed the (readily available, already in stock at my doctor's office) medicine.
It took nine days of swimming through the murky, muddy, shitty waters of the insurance world. I've said it before + it bears repeating: I do not know how people face this without insurance coverage. Something in our system needs to change, starting with paying attention when requests from an oncologist's office are stamped "URGENT".
I was prepared to beg, fundraise, sell all my clothes on e-Bay, do whatever it took to get this done. But at about $15,000 worth of infusions every three weeks, indefinitely, we were looking at upwards of $225,000 per year out-of-pocket. And even though it FEELS like we pay that much toward my law school loans, our pockets do not run nearly that deep.
Here's what the last ten days have taught me. You MUST be your own advocate. You must demand treatment. You must be relentless, be the biggest pain-in-the-ass your doctor's office and the insurance company have ever seen. Before the approval came in yesterday, I finally told my doctor's office I was going to start treatment today; it was up to them to make it happen, whatever magic wand they had to wave. I learned that you DO NOT GIVE UP.
This experience also got me thinking (again) that if insurance companies started paying for screening earlier and doctors started listening to young women who come in with concerns about their breasts instead of insisting that it must be fibroids or blocked milk ducts, then maybe we could start to really cut down on costly, aggressive treatments for advanced disease. Here are a couple of other women in my camp, reiterating this point.
*****
When you find out you've got cancer, time seems to move as if it's trying to swim through mud. You watch the clock constantly as you wait for answers, wait for treatment, wait for a cure. Because you've been through this before and know how well your cancer responds to chemo, you know how important it is to have the poison that will save your life. You are eager for it. You try to fill your time with phone calls to someone - anyone - who might be able to help.
I found out on Tuesday, July 17th that my cancer had come back. Recurrence is one of the scariest words that exists for people who've had cancer. And amazingly, the sky did not fall; there were no floods, tornadoes, or locusts signaling the end of days. I felt like my world was crashing around me, but the mail still got delivered, clients still scheduled meetings, and a group of people walked into a midnight screening of a movie in Denver never to walk out again. Life -- and its chaotic twists -- kept going.
*****
My doctor's office promised me we'd have an answer from my insurance company about starting chemo within 24-48 hours. It took about eight days longer than that. That's one day longer than it took God to build world and still have one day leftover for resting. Eight days is an eternity in insurance decision limbo land. There is almost not enough Xanax out there to get a person through those excruciating moments. Luckily, I also have a lot of love. My supporters - and the messages of strength they send me - continue to amaze me.
I've got three little masses in my lymphatic system - so not all that bad, as far as Stage IV cancer is concerned, if you can find a silver lining. But I've also got an extremely aggressive cancer (grade 3, HER2+ for those of you who know this stuff). Every day without treatment is another day my cancer had time to grow, evolve, spread its tentacles into the rest of my body. I know I can beat this; I just needed the (readily available, already in stock at my doctor's office) medicine.
It took nine days of swimming through the murky, muddy, shitty waters of the insurance world. I've said it before + it bears repeating: I do not know how people face this without insurance coverage. Something in our system needs to change, starting with paying attention when requests from an oncologist's office are stamped "URGENT".
Friday, July 20, 2012
Round Two
To say I was blindsided this week is putting it lightly. My oncologist called with PET scan results on Tuesday; it lit up in a couple of areas in my chest wall again, and in my spleen. I don't know whether this is technically a recurrence or just the last little bit of disease left over from my first round last fall. In the end, it doesn't really matter. It's back.
Assuming insurance approves it, I'll start on a new drug, Pertuzumab, along with Herceptin and Taxotere, a targeted treatment that will hopefully wipe out the last of this shit. It means chemo and all it entails until they come up with something better. It means losing my hair again (really, it's the eyeybrows and eyelashes I miss the most). It means mustering up the strength hidden in my pinky toes to keep fighting for as long as it takes, until they come up with something less toxic. My doctor has said to treat this like diabetes or any other chronic illness - maybe not curable, but manageable and treatable. Still, with no end in sight, no "finish line" to cross, wrapping my head around this new course of treatment is throwing me for a loop.
So I'm setting my sights on events instead. I will walk Quinn into kindergarten, holding that chubby little hand in mine (ah, who am I kidding? He'll be sprinting ahead, eager for a new adventure, but I'll be there to look on proudly). I will be there to hear his valedictorian speech when he graduates from high school. (What? I might as well dream big, and seventeen years from now is pretty big dreaming). In my mind, I am also there when he marries the love of his life, clinking my champagne glass with Chris' over what a great job we did raising such a strong young man.
Chris and I met in the spring of 2005. He was working on his dissertation, up late writing most nights and not sure he'd even stay in D.C. long enough for a relationship to make sense. I was considering law school in California. That summer, Chris went to Africa for a couple of months (but he called me from the satellite phone, so I knew he liked me). In August, I went deep-sea fishing in Alaska for work, and Chris was there to pick me up at the airport when I got back. Chris had gotten word from the Smithsonian that they could extend his funding and keep him in D.C. another couple of years, so I decided to stay put and enroll at American University. At some point late that summer I turned to Chris and said: "So, are we going to do this?"
That was just over seven years ago, which is not all that long in the grand scheme of things. But the two of us, we are a force. Add in the little Bug and you've got yourself a formidable army here. We work, this family of ours. And so my boys and I are gearing up, putting on our armor and heading into battle again. We may not look like much, given my battle scars and Quinn's pint-sizedness and Chris' graying at the temples. But watch out, cancer - we are stronger than you think and now we're pissed off, to boot. We are coming for you, about to blast you out of every corner where you're lurking. Because here's the thing. With us, the answer has always been, "Yes, we are going to do this."
Assuming insurance approves it, I'll start on a new drug, Pertuzumab, along with Herceptin and Taxotere, a targeted treatment that will hopefully wipe out the last of this shit. It means chemo and all it entails until they come up with something better. It means losing my hair again (really, it's the eyeybrows and eyelashes I miss the most). It means mustering up the strength hidden in my pinky toes to keep fighting for as long as it takes, until they come up with something less toxic. My doctor has said to treat this like diabetes or any other chronic illness - maybe not curable, but manageable and treatable. Still, with no end in sight, no "finish line" to cross, wrapping my head around this new course of treatment is throwing me for a loop.
So I'm setting my sights on events instead. I will walk Quinn into kindergarten, holding that chubby little hand in mine (ah, who am I kidding? He'll be sprinting ahead, eager for a new adventure, but I'll be there to look on proudly). I will be there to hear his valedictorian speech when he graduates from high school. (What? I might as well dream big, and seventeen years from now is pretty big dreaming). In my mind, I am also there when he marries the love of his life, clinking my champagne glass with Chris' over what a great job we did raising such a strong young man.
Chris and I met in the spring of 2005. He was working on his dissertation, up late writing most nights and not sure he'd even stay in D.C. long enough for a relationship to make sense. I was considering law school in California. That summer, Chris went to Africa for a couple of months (but he called me from the satellite phone, so I knew he liked me). In August, I went deep-sea fishing in Alaska for work, and Chris was there to pick me up at the airport when I got back. Chris had gotten word from the Smithsonian that they could extend his funding and keep him in D.C. another couple of years, so I decided to stay put and enroll at American University. At some point late that summer I turned to Chris and said: "So, are we going to do this?"
That was just over seven years ago, which is not all that long in the grand scheme of things. But the two of us, we are a force. Add in the little Bug and you've got yourself a formidable army here. We work, this family of ours. And so my boys and I are gearing up, putting on our armor and heading into battle again. We may not look like much, given my battle scars and Quinn's pint-sizedness and Chris' graying at the temples. But watch out, cancer - we are stronger than you think and now we're pissed off, to boot. We are coming for you, about to blast you out of every corner where you're lurking. Because here's the thing. With us, the answer has always been, "Yes, we are going to do this."
Monday, July 16, 2012
Choices
In a yoga class last week, my instructor brought us into eagle pose. She told us the story of Vishnu, the god who rode into battle on an eagle. "Feel your strength in this pose. By choosing this practice you are choosing to keep yourself alive." I honestly don't know enough about Vishnu's ride or battle to know what the correlation is here, but the idea that I could choose to live stuck with me. Of course I will keep myself alive. Back to that point in a minute.
* * * * *
I was running late for work one day last week, one of the few mornings when I had a 9 a.m. call scheduled. As Chris and Bug were about to head out the door, I realized I hadn't put anything together for Quinn's lunch. As I yanked open the refrigerator door to look for inspiration, the bottom shelf fell straight off, sending an unopened bottle of wine crashing to the concrete kitchen floor. I mopped it up and picked up shards of glass as Chris microwaved some mac-n-cheese. Then as Chris threw the wine-soaked towels into the washing machine, I quickly diced a watermelon. I tossed in a squeezable yogurt, and my boys were out the door. This left me approximately 12 minutes to shower (so I wouldn't smell like a drunk), get dressed, and get on my way. Honestly, thank God for short hair and a casual office.
At a stoplight about 5 minutes from my office, I got an email that the meeting had been cancelled. At least I could stop driving like a maniac. As I pulled into a parking space in the garage at work, a woman whose car I've noticed before pulled in next to me. She has one of those breast cancer license plates. We were walking toward the elevator together and I asked her if she was a survivor. She said yes - six years now. Turns out we even have the same plastic surgeon. I mentioned that I was going to have my first follow-up PET scan this week and admitted that I was pretty anxious about it. (And that might be the understatement of the century.) She said she still gets nervous for her annual scans. Another friend explained that just as you've gotten past cancer and started to imagine the life you could live, you're reminded that things don't always go well. As cancer survivors, we know what it's like to get a bad result.
Chris reminded me several times over the past few days - as I broke down in sobs on the couch or felt sick to my stomach with anxiety - that worrying about it won't change it. He's right, of course, and so today, on the advice of another survivor, as I sat in the dark room waiting for the radioactive glucose to make its way through my veins before the scan, I visualized healthy cells. I imagined Quinn starting kindergarten and pictured our mother-son dance together at his wedding. I envisioned all of the positive energy of every one of you who has wished me well through this floating around me, enveloping me with warmth and light and hope. I breathed, and I meditated.
* * * * *
Last week, maybe the same day I met the survivor in my parking garage, I received an email from an old friend (also a cancer survivor), letting me know that a former mutual colleague had passed away. She wrote: Amazingly, Peter told us last year that he knew he would die when he was 86 years old. Both parents and an elder brother had died at 86. When I expressed chagrin or doubt he’d say, “Dear, I know a little something about genetics, you know, and I’m telling you what I know.” He was either so smart, or so determined, or both, that he died yesterday, one day before his 87th birthday.
All of this to say that I've been thinking so much about mortality over the last year, and I absolutely love the idea that you have the power to choose when you leave this world, to choose life. This message was coming to me in so many forms over the last few days, just as I needed reminding: I am not leaving anytime soon.
* * * * *
I was running late for work one day last week, one of the few mornings when I had a 9 a.m. call scheduled. As Chris and Bug were about to head out the door, I realized I hadn't put anything together for Quinn's lunch. As I yanked open the refrigerator door to look for inspiration, the bottom shelf fell straight off, sending an unopened bottle of wine crashing to the concrete kitchen floor. I mopped it up and picked up shards of glass as Chris microwaved some mac-n-cheese. Then as Chris threw the wine-soaked towels into the washing machine, I quickly diced a watermelon. I tossed in a squeezable yogurt, and my boys were out the door. This left me approximately 12 minutes to shower (so I wouldn't smell like a drunk), get dressed, and get on my way. Honestly, thank God for short hair and a casual office.
At a stoplight about 5 minutes from my office, I got an email that the meeting had been cancelled. At least I could stop driving like a maniac. As I pulled into a parking space in the garage at work, a woman whose car I've noticed before pulled in next to me. She has one of those breast cancer license plates. We were walking toward the elevator together and I asked her if she was a survivor. She said yes - six years now. Turns out we even have the same plastic surgeon. I mentioned that I was going to have my first follow-up PET scan this week and admitted that I was pretty anxious about it. (And that might be the understatement of the century.) She said she still gets nervous for her annual scans. Another friend explained that just as you've gotten past cancer and started to imagine the life you could live, you're reminded that things don't always go well. As cancer survivors, we know what it's like to get a bad result.
Chris reminded me several times over the past few days - as I broke down in sobs on the couch or felt sick to my stomach with anxiety - that worrying about it won't change it. He's right, of course, and so today, on the advice of another survivor, as I sat in the dark room waiting for the radioactive glucose to make its way through my veins before the scan, I visualized healthy cells. I imagined Quinn starting kindergarten and pictured our mother-son dance together at his wedding. I envisioned all of the positive energy of every one of you who has wished me well through this floating around me, enveloping me with warmth and light and hope. I breathed, and I meditated.
* * * * *
Last week, maybe the same day I met the survivor in my parking garage, I received an email from an old friend (also a cancer survivor), letting me know that a former mutual colleague had passed away. She wrote: Amazingly, Peter told us last year that he knew he would die when he was 86 years old. Both parents and an elder brother had died at 86. When I expressed chagrin or doubt he’d say, “Dear, I know a little something about genetics, you know, and I’m telling you what I know.” He was either so smart, or so determined, or both, that he died yesterday, one day before his 87th birthday.
All of this to say that I've been thinking so much about mortality over the last year, and I absolutely love the idea that you have the power to choose when you leave this world, to choose life. This message was coming to me in so many forms over the last few days, just as I needed reminding: I am not leaving anytime soon.
Sunday, July 8, 2012
Full Circle
A couple of weeks ago I had my last visit to my plastic surgeon for awhile. Surgery to swap out the expanders for implants likely won't happen until at least November, which will give my irradiated tissue time to fully heal before being operated on again. I'm in no rush to go through another surgery anyway.
Walking out of my surgeon's office, I literally almost ran head into the doctor who delivered Quinn, the doctor who told me he was sure the lump in my right breast was just a blocked milk duct; he had said to treat it with hot compresses and by expressing my milk more frequently. To be fair, even after I switched doctors and got a second opinion, my new doctor also said he was sure it was nothing.
Dr. F - Quinn's delivery doctor - was walking in to my suregon's office with his wife, who is also his receptionist. He was holding onto her elbow to guide her, probably how he'd done thousands of times before in their forty-plus years of marriage. She recognized me, but it took him a minute longer. I knew in an instant why they were there. Their faces - full of angst and panic and distress - spoke volumes to someone who's been through cancer.
We chatted in the doorway for a few minutes about the last year. She was having her pre-op appointment for her expander swap-out surgery (no delay for her because she hadn't had to go through chemo or radiation.) Mrs. F was "lucky," although I wouldn't wish any part of this disease on my worst enemy. Her cancer was caught early, only Stage 1, and she had opted for a double mastectomy because of a family history. We commiserated about how hard and uncomfortable the expanders are - like unwieldy grapefruits under our skin. I showed Dr. F pictures of Quinn and told them about completing treatment. He asked if I'd have more kids; I told him I probably wouldn't be able to, that I just want to be around to watch the one I've got grow up.
I walked away from this strange encounter in a kind of stupefied awe at how cathartic it had been. I hadn't realized quite how much anger I'd carried with me about my doctors ignoring my concern, telling me they were sure it was nothing, until it all melted away that morning. It turns out there's a huge amount of relief in forgiveness. (I'm pretty sure gurus have been teaching this for years.) Seeing Dr. F and his wife walking into that office, all I could feel for this couple was empathy. I wanted to wrap them both in a big hug and tell them everything is going to be okay. I sure hope that's true.
Walking out of my surgeon's office, I literally almost ran head into the doctor who delivered Quinn, the doctor who told me he was sure the lump in my right breast was just a blocked milk duct; he had said to treat it with hot compresses and by expressing my milk more frequently. To be fair, even after I switched doctors and got a second opinion, my new doctor also said he was sure it was nothing.
Dr. F - Quinn's delivery doctor - was walking in to my suregon's office with his wife, who is also his receptionist. He was holding onto her elbow to guide her, probably how he'd done thousands of times before in their forty-plus years of marriage. She recognized me, but it took him a minute longer. I knew in an instant why they were there. Their faces - full of angst and panic and distress - spoke volumes to someone who's been through cancer.
We chatted in the doorway for a few minutes about the last year. She was having her pre-op appointment for her expander swap-out surgery (no delay for her because she hadn't had to go through chemo or radiation.) Mrs. F was "lucky," although I wouldn't wish any part of this disease on my worst enemy. Her cancer was caught early, only Stage 1, and she had opted for a double mastectomy because of a family history. We commiserated about how hard and uncomfortable the expanders are - like unwieldy grapefruits under our skin. I showed Dr. F pictures of Quinn and told them about completing treatment. He asked if I'd have more kids; I told him I probably wouldn't be able to, that I just want to be around to watch the one I've got grow up.
I walked away from this strange encounter in a kind of stupefied awe at how cathartic it had been. I hadn't realized quite how much anger I'd carried with me about my doctors ignoring my concern, telling me they were sure it was nothing, until it all melted away that morning. It turns out there's a huge amount of relief in forgiveness. (I'm pretty sure gurus have been teaching this for years.) Seeing Dr. F and his wife walking into that office, all I could feel for this couple was empathy. I wanted to wrap them both in a big hug and tell them everything is going to be okay. I sure hope that's true.
Wednesday, June 20, 2012
Words of Wisdom
Chris and I got into an argument the other night; it revolved around a recurring theme of me not using my words (and expecting him to know, intuitively, what I want) and him - well, not being a mind-reader. As Chris and I talked it out after the fact, though, other issues emerged: my fear of standing on my own wobbly feet post-treatment, his surprise that I don't walk around feeling like a badass-who-stomped-all-over-cancer 100% of the time. On a side note, I sort of love that this is what he expects from me. For Chris, our talk shed light on my vulnerability. All along I thought it was so obvious, how close to the surface my emotions have been bubbling.
I'd reached out to another survivor recently, and the morning after this argument I heard back from her. She emailed to say she's in her second remission and doing well on experimental, mostly non-toxic drugs. She also happened to mention that her marriage was on the rocks, in no small thanks to cancer, which I think is just plain toxic no matter which drugs you're taking. I called Chris almost immediately.
"I don't want cancer to ruin our marriage."
"I don't want cancer to do anything," he responded. Fair point.
On a somewhat related note, I've been having a conversation with a wise friend I met through cancer about how much our worlds have flipped upside down in the last year. She has a little girl who's a week younger than Quinn. And a couple of the things she said in our most recent exchange stuck with me: one, having a baby and going through cancer are two of the most life-changing events a person can experience, and we went through them at the same time, so it's tough to tell which changes are caused by parenthood and which are a result of cancer -- and it doesn't really matter.
The second thing she said was that she keeps learning and learning and learning again that we have to live in the now. It's not the easiest thing to do; there is a huge part of me that cheers every passing day as a day further removed from cancer. I'm looking forward to celebrating my victory at the 5-, 10-, 25-year marks and beyond. On the other hand and at the risk of sounding like a cliche, time passes so very quickly. I can't quite believe Quinn is old enough to blow me kisses good-bye in the morning, and I don't want to lose sight of the gifts in front of me because I'm too busy waiting for another "cancerversary" to pass.
Speaking of Quinn, he spiked a fever that reached almost 103 last Friday. He was sent home from daycare, pale and with red-rimmed eyes that looked like he'd spent all night at a rave. By Saturday, just as we'd gotten the fever under control, he broke out in a rash up and down his fat little legs. There was a confirmed case of hand-foot-mouth disease at daycare; Quinn appeared to have calf-thigh-wrist disease.
He was cranky most of the weekend, didn't have much of an appetite, and wasn't sleeping all that well, waking up crying even before 6 o'clock, which is too damn early on a Saturday, even if Chris and I did go to sleep at 9:45 on Friday. Poor Bug clearly didn't feel well enough to sleep any longer.
All of this to say that Chris and I are exhausted. Parenting is hard work. I don't know if it's any harder in a post-cancer world, except our emotions are incredibly raw, so maybe our ability to cope is compromised in a way it wouldn't otherwise be. Going forward, we have promised each other to try to use our words. It's hard enough with one member of the household pointing at everything saying "Ba!"
I'd reached out to another survivor recently, and the morning after this argument I heard back from her. She emailed to say she's in her second remission and doing well on experimental, mostly non-toxic drugs. She also happened to mention that her marriage was on the rocks, in no small thanks to cancer, which I think is just plain toxic no matter which drugs you're taking. I called Chris almost immediately.
"I don't want cancer to ruin our marriage."
"I don't want cancer to do anything," he responded. Fair point.
On a somewhat related note, I've been having a conversation with a wise friend I met through cancer about how much our worlds have flipped upside down in the last year. She has a little girl who's a week younger than Quinn. And a couple of the things she said in our most recent exchange stuck with me: one, having a baby and going through cancer are two of the most life-changing events a person can experience, and we went through them at the same time, so it's tough to tell which changes are caused by parenthood and which are a result of cancer -- and it doesn't really matter.
The second thing she said was that she keeps learning and learning and learning again that we have to live in the now. It's not the easiest thing to do; there is a huge part of me that cheers every passing day as a day further removed from cancer. I'm looking forward to celebrating my victory at the 5-, 10-, 25-year marks and beyond. On the other hand and at the risk of sounding like a cliche, time passes so very quickly. I can't quite believe Quinn is old enough to blow me kisses good-bye in the morning, and I don't want to lose sight of the gifts in front of me because I'm too busy waiting for another "cancerversary" to pass.
Speaking of Quinn, he spiked a fever that reached almost 103 last Friday. He was sent home from daycare, pale and with red-rimmed eyes that looked like he'd spent all night at a rave. By Saturday, just as we'd gotten the fever under control, he broke out in a rash up and down his fat little legs. There was a confirmed case of hand-foot-mouth disease at daycare; Quinn appeared to have calf-thigh-wrist disease.
He was cranky most of the weekend, didn't have much of an appetite, and wasn't sleeping all that well, waking up crying even before 6 o'clock, which is too damn early on a Saturday, even if Chris and I did go to sleep at 9:45 on Friday. Poor Bug clearly didn't feel well enough to sleep any longer.
All of this to say that Chris and I are exhausted. Parenting is hard work. I don't know if it's any harder in a post-cancer world, except our emotions are incredibly raw, so maybe our ability to cope is compromised in a way it wouldn't otherwise be. Going forward, we have promised each other to try to use our words. It's hard enough with one member of the household pointing at everything saying "Ba!"
Thursday, June 14, 2012
Mexico
We've been back almost a week, and what a week it's been. On my way to pick Quinn up from daycare on Tuesday, I was rear-ended and pushed into the stopped car in front of me. There were no injuries, just new dents to both ends of my car a month before we're planning on selling it. Then, yesterday, in an epic miscommunication, Chris and I both ended up buying formula but neither one of us picked up Quinn from daycare. When Chris walked in the door at 5:35, he apologized for being a few minutes late (I was supposed to leave for yoga at 5:30) explaining that he'd had to stop to get the formula. "I GOT THE FORMULA," I said, and then we both looked at each other in horror as we realized that neither one of us had Bug. I swear, the universe is telling us to go back on vacation.
Hard to believe it was only a week ago we were here:
Hard to believe it was only a week ago we were here:
Thursday, May 31, 2012
Recovery
I never meant to be so spotty with my updates here. Post-treatment life came slamming back into our world like a bull in a china shop. No rest for the weary. (Or, that's just how things are with a one-year-old in tow.) Slowly but surely, our lives are getting back to - dare I say it? - normal. As with most survivors, it's a new normal, redefined now that cancer is always lurking like a bad houseguest that will probably sleep on our couch for the next six months.
It's a normal still punctuated by doctors visits, although they're less frequent now. (I had my one-month follow-up with my radiation oncologist yesterday. One month!) And while shopping at Target, I got asked who my hairdresser was. Happy tears welled up as I explained this is how it's growing in post-chemo. I am almost due for a trim, which kinda blows my mind it's so normal. Life goes on. Hair grows back.
At the beginning of all this, someone who'd been through it told me it took his body a year to recover. At the time, and even during chemo, I didn't understand how that could be true. I hiked and went to yoga as often as I could. It helped keep my energy up - and, honestly - I didn't feel too terrible during most of chemo. Radiation sapped my energy in a whole different way, creeping up on me like dawn in Vegas. And the cumulative effects of treatment - or maybe it's just Bug being a toddler; are all moms this tired? - make me feel like I've aged ten years during this process. Still, I'll take it. Aging is better than not.
Every once in awhile, I still feel that prickly wave of fear creep up the back of my neck and freeze me in my tracks. Oddly, and selfishly, hearing the afternoon traffic report on NPR explaining that the snarled mess I'm stuck in is due to a fatal crash takes some of the fear away, reminding me that any of us could go, anytime. It's a morbid reassurance, I know.
A couple of weeks ago, I made lasagna for the family of the woman I knew who passed away. I browned the sausage, chopped fresh basil and parsley, stirred in tomatoes. I layered it with four different types of cheese, because there's love in cheese, isn't there? And then I wondered whether I could have a few more years if I keep doing nice things for people. Isn't that how karma's supposed to work?
I must have done something right, because Quinn continues to inspire me with his belly laughs, his mischievous grins, his fascination with our ceiling fans. As my body recovers, I have his wide-eyed wonder to greet me at the beginning of each day. It's making the mental part of my recovery so much easier, even if chasing him does take its toll physically.
Know what else is going to put me in a good mental state? Mexico. We're leaving tomorrow and hoping to find our reset buttons. I'll post pictures when we're back. And then I hope to be less spotty in this space. Until then...
It's a normal still punctuated by doctors visits, although they're less frequent now. (I had my one-month follow-up with my radiation oncologist yesterday. One month!) And while shopping at Target, I got asked who my hairdresser was. Happy tears welled up as I explained this is how it's growing in post-chemo. I am almost due for a trim, which kinda blows my mind it's so normal. Life goes on. Hair grows back.
At the beginning of all this, someone who'd been through it told me it took his body a year to recover. At the time, and even during chemo, I didn't understand how that could be true. I hiked and went to yoga as often as I could. It helped keep my energy up - and, honestly - I didn't feel too terrible during most of chemo. Radiation sapped my energy in a whole different way, creeping up on me like dawn in Vegas. And the cumulative effects of treatment - or maybe it's just Bug being a toddler; are all moms this tired? - make me feel like I've aged ten years during this process. Still, I'll take it. Aging is better than not.
Every once in awhile, I still feel that prickly wave of fear creep up the back of my neck and freeze me in my tracks. Oddly, and selfishly, hearing the afternoon traffic report on NPR explaining that the snarled mess I'm stuck in is due to a fatal crash takes some of the fear away, reminding me that any of us could go, anytime. It's a morbid reassurance, I know.
A couple of weeks ago, I made lasagna for the family of the woman I knew who passed away. I browned the sausage, chopped fresh basil and parsley, stirred in tomatoes. I layered it with four different types of cheese, because there's love in cheese, isn't there? And then I wondered whether I could have a few more years if I keep doing nice things for people. Isn't that how karma's supposed to work?
I must have done something right, because Quinn continues to inspire me with his belly laughs, his mischievous grins, his fascination with our ceiling fans. As my body recovers, I have his wide-eyed wonder to greet me at the beginning of each day. It's making the mental part of my recovery so much easier, even if chasing him does take its toll physically.
Know what else is going to put me in a good mental state? Mexico. We're leaving tomorrow and hoping to find our reset buttons. I'll post pictures when we're back. And then I hope to be less spotty in this space. Until then...
Tuesday, May 15, 2012
Babies
We celebrated Mother's Day this past weekend with my older brothers, my sister-in-law, my nephew and my mom. Everyone came over for brunch and mimosas. Side note: Quinn loves quiche, can inhale the stuff. It was my first Mother's Day since my diagnosis. Another side note: I wonder if everything from here on out will be referenced as either "before cancer" or "after cancer"?
The day had me thinking about babies. A number of close friends have had pregnancy successes - and failures - recently, so the topic has been on my mind. Also, making babies isn't something that gets discussed in the national cancer dialogue very often. It may not even occur to you how the two are related. But for many women, cancer means the end of our fertility.
Let me explain. Chemo works because it's toxic, but it doesn't just attack cancer cells. It affects a person's whole body, throwing many of us - including me - into what some dub "chemopause" (hot flashes and all). Apparently, it's only permanent about 50% of the time, and in my case, it's too early to tell.
But that's not the only issue.
Breast cancer is often driven, in part, by hormones. For those of us whose tumors had positive hormone receptors, we've got to take hormone-suppressing medications for typically 5 years after treatment, sometimes longer. As you might imagine, these pills are not compatible with pregnancy.
And I know cancer isn't the only thing that causes infertility. But when your choice is taken out of the equation by something that could also take your life (so you feel grateful to be alive despite grieving your losses), it stings a special kind of sting.
I've come to terms with the fact that I probably won't be able to give birth to another baby. (And that's okay. The one I've got is wonderful.) It took me awhile to reach this point, though. I had always imagined having lots of kids. Even when I got married at the age of 30, I assumed we'd have more than one.
I know I'm one of the lucky ones. I had my baby. Every day I get to experience all those incredible, poop-filled, sleepless, terrifying, proud moments that come with motherhood. It is the most insane, exhausting, amazing job on the planet. I am not even close to out of adjectives.
Everybody deserves to know this kind of love.
Some women have time to freeze their eggs prior to chemo. My doctors were in a rush to start fighting my aggressive tumor so I didn't have that option. It's also an expensive procedure, and there's no guarantee pregnancy will be an option down the road. Giuliana Rancic is paying someone to be a surrogate for her. Estimates for the costs of that kind of treatment are in the six figures. I wish we all had that choice.
The day had me thinking about babies. A number of close friends have had pregnancy successes - and failures - recently, so the topic has been on my mind. Also, making babies isn't something that gets discussed in the national cancer dialogue very often. It may not even occur to you how the two are related. But for many women, cancer means the end of our fertility.
Let me explain. Chemo works because it's toxic, but it doesn't just attack cancer cells. It affects a person's whole body, throwing many of us - including me - into what some dub "chemopause" (hot flashes and all). Apparently, it's only permanent about 50% of the time, and in my case, it's too early to tell.
But that's not the only issue.
Breast cancer is often driven, in part, by hormones. For those of us whose tumors had positive hormone receptors, we've got to take hormone-suppressing medications for typically 5 years after treatment, sometimes longer. As you might imagine, these pills are not compatible with pregnancy.
And I know cancer isn't the only thing that causes infertility. But when your choice is taken out of the equation by something that could also take your life (so you feel grateful to be alive despite grieving your losses), it stings a special kind of sting.
I've come to terms with the fact that I probably won't be able to give birth to another baby. (And that's okay. The one I've got is wonderful.) It took me awhile to reach this point, though. I had always imagined having lots of kids. Even when I got married at the age of 30, I assumed we'd have more than one.
I know I'm one of the lucky ones. I had my baby. Every day I get to experience all those incredible, poop-filled, sleepless, terrifying, proud moments that come with motherhood. It is the most insane, exhausting, amazing job on the planet. I am not even close to out of adjectives.
Everybody deserves to know this kind of love.
Some women have time to freeze their eggs prior to chemo. My doctors were in a rush to start fighting my aggressive tumor so I didn't have that option. It's also an expensive procedure, and there's no guarantee pregnancy will be an option down the road. Giuliana Rancic is paying someone to be a surrogate for her. Estimates for the costs of that kind of treatment are in the six figures. I wish we all had that choice.
Friday, May 4, 2012
Everything in its Place
We have built-in shelves in our guest bathroom that house an array of my stuff - jewelry from my grandmother, bath salts, hair ties and headbands, toiletry bags for traveling. Despite my few attempts to segregate things into canvas bins and boxes, these shelves have been in need of some serious organization since we moved in.
And it just so happens that I went to visit my oldest and best friend in Seattle last weekend, who is one of the most organized people I know. In her car, she has a mesh Ziploc bag devoted to her kids' favorite chewing gum flavors (whereas I'm always finding melted pieces of Dentyne in the bottom of my purse, pressed into the pennies and bobby pins). She's so organized, there are never piles of junk mail on her kitchen counter - I think it knows the routine by now and marches itself straight to her recycling bin. I promise this post isn't sponsored, but I swear she could singlehandedly keep The Container Store in business.
So I came home from Seattle feeling inspired to do a little spring cleaning of my own. A post-cancer clutter clear-out of sorts. It's slow-going, in part because there are only so many hours in a day, in part because of the crushing fatigue radiation has left in its wake, but also because - as Chris puts it - I'm a crier. I'll explain that in a minute.
Of the two of us, I am by far the less pack-ratty one. Probably because Chris can keep his things orderly, while I just weed out my drawers for a Goodwill run whenever they get too stuffed to close properly. I prefer clean, uncluttered design (read: Ikea). But I have never claimed to be the most organized person on the planet. Or in my house.
Back to the shelves...and my crying. Amongst everything else, I found my wedding jewelry and the note I received from Chris on our first wedding anniversary, back when we were young. (Some things are worth saving.) It said, in part: Happy First Anniversary...So Many More to Come. Immediately, my eyes filled up and welled over. The promise of those words got caught in my throat like a pill. I was not a pretty sight in the bathroom mirror, forehead scrunched and cheeks splotchy as I let the emotion out. And then I yelled at the bathroom walls for good measure.
Cancer, did you hear me?
Because I am still angry, and I am not following you into your dark hole. I am clearing out the clutter, shaking off the cobwebs, putting the pieces of my life back in place. I am cleaning house and saying good riddance to you and your wreckage. As my yoga instructor put it a few weeks ago: My body is clean, and I am free.
On the other hand, it took a considerable amount of time for me to regain my composure, and, so, my bathroom shelves remain disorganized. Safer to start with my closet, maybe.
And it just so happens that I went to visit my oldest and best friend in Seattle last weekend, who is one of the most organized people I know. In her car, she has a mesh Ziploc bag devoted to her kids' favorite chewing gum flavors (whereas I'm always finding melted pieces of Dentyne in the bottom of my purse, pressed into the pennies and bobby pins). She's so organized, there are never piles of junk mail on her kitchen counter - I think it knows the routine by now and marches itself straight to her recycling bin. I promise this post isn't sponsored, but I swear she could singlehandedly keep The Container Store in business.
So I came home from Seattle feeling inspired to do a little spring cleaning of my own. A post-cancer clutter clear-out of sorts. It's slow-going, in part because there are only so many hours in a day, in part because of the crushing fatigue radiation has left in its wake, but also because - as Chris puts it - I'm a crier. I'll explain that in a minute.
Of the two of us, I am by far the less pack-ratty one. Probably because Chris can keep his things orderly, while I just weed out my drawers for a Goodwill run whenever they get too stuffed to close properly. I prefer clean, uncluttered design (read: Ikea). But I have never claimed to be the most organized person on the planet. Or in my house.
Back to the shelves...and my crying. Amongst everything else, I found my wedding jewelry and the note I received from Chris on our first wedding anniversary, back when we were young. (Some things are worth saving.) It said, in part: Happy First Anniversary...So Many More to Come. Immediately, my eyes filled up and welled over. The promise of those words got caught in my throat like a pill. I was not a pretty sight in the bathroom mirror, forehead scrunched and cheeks splotchy as I let the emotion out. And then I yelled at the bathroom walls for good measure.
Cancer, did you hear me?
Because I am still angry, and I am not following you into your dark hole. I am clearing out the clutter, shaking off the cobwebs, putting the pieces of my life back in place. I am cleaning house and saying good riddance to you and your wreckage. As my yoga instructor put it a few weeks ago: My body is clean, and I am free.
On the other hand, it took a considerable amount of time for me to regain my composure, and, so, my bathroom shelves remain disorganized. Safer to start with my closet, maybe.
Thursday, April 19, 2012
The Wall
Nineteen treatments down; I guess I should update you guys as to how I'm doing.
Going in to radiation, I was frustrated. Being in "active" treatment again - and treatment every day, at that - brought cancer back to the forefront of my brain (and it hadn't even really had time to get to the recesses). Radiation dusted cancer off and revved it up, when I was ready to let it collect rust and have weeds grow up through its broken parts. Simply put, I was done with cancer. (Still am, actually.) So I went in to radiation reluctantly, even though I know it's not the enemy, even though I know it's good for me.
As survivor/doctor/author Kim Allison put it:
Can't I just go on with life? I did it. The cancer is gone. I feel like a sick little kid asking her mom, "Come on can't I PLEASE go out to play?"
And logistically? Radiation is a pain in the butt. You have to block off every day between 9:45 and 10:45 plus travel time. At least once a week the machine has issues or the computers that talk to the machine need rebooting, and you sit around in the waiting room wearing an oversized salmon-colored smock reading brochures about coping with a breast cancer diagnosis. You can't even check Facebook because there's not a smidge of cell phone service in the building. On top of the daily grind it entails, radiation reminds you that cancer, in a very real sense, is still controlling things - or at least your schedule.
Physically, my skin is holding up pretty well. Just a little pinkness and itchiness, as if I'm allergic. I slather on aloe four or five times a day, hoping sores won't erupt on my chest in my final week of treatment.
Final week! I am elated that this is so close to behind me.
When I was diagnosed last August, the nurses at the imaging center warned me that this year was going to be a marathon. That was 8 months ago today. Runners talk about hitting a "wall," usually around mile 20 in a marathon. It's that point when your shoes feel like cement blocks and your legs might as well be made of lead. No amount of Goo or Gatorade is going to help, but somehow a cheering crowd does wonders to get you to take one more step, and then one more after that, and again until the finish line is in sight. It hurts. It's exhausting. You just want a hot shower and a beer. But you also want the glory of finishing strong.
I hit my wall this month, and my body is screaming at me to take a break. I have six more treatments. The exhaustion is catching up with me - from radiation, yes, but also from eight months of shoveling this shit they call cancer. I am spent. But I also have the best cheer section out there. I am supported by this community of mine, and I will finish strong.
Plus, we booked a trip to Mexico. Not soon enough, but it's within sight.
Going in to radiation, I was frustrated. Being in "active" treatment again - and treatment every day, at that - brought cancer back to the forefront of my brain (and it hadn't even really had time to get to the recesses). Radiation dusted cancer off and revved it up, when I was ready to let it collect rust and have weeds grow up through its broken parts. Simply put, I was done with cancer. (Still am, actually.) So I went in to radiation reluctantly, even though I know it's not the enemy, even though I know it's good for me.
As survivor/doctor/author Kim Allison put it:
Can't I just go on with life? I did it. The cancer is gone. I feel like a sick little kid asking her mom, "Come on can't I PLEASE go out to play?"
And logistically? Radiation is a pain in the butt. You have to block off every day between 9:45 and 10:45 plus travel time. At least once a week the machine has issues or the computers that talk to the machine need rebooting, and you sit around in the waiting room wearing an oversized salmon-colored smock reading brochures about coping with a breast cancer diagnosis. You can't even check Facebook because there's not a smidge of cell phone service in the building. On top of the daily grind it entails, radiation reminds you that cancer, in a very real sense, is still controlling things - or at least your schedule.
Physically, my skin is holding up pretty well. Just a little pinkness and itchiness, as if I'm allergic. I slather on aloe four or five times a day, hoping sores won't erupt on my chest in my final week of treatment.
Final week! I am elated that this is so close to behind me.
When I was diagnosed last August, the nurses at the imaging center warned me that this year was going to be a marathon. That was 8 months ago today. Runners talk about hitting a "wall," usually around mile 20 in a marathon. It's that point when your shoes feel like cement blocks and your legs might as well be made of lead. No amount of Goo or Gatorade is going to help, but somehow a cheering crowd does wonders to get you to take one more step, and then one more after that, and again until the finish line is in sight. It hurts. It's exhausting. You just want a hot shower and a beer. But you also want the glory of finishing strong.
I hit my wall this month, and my body is screaming at me to take a break. I have six more treatments. The exhaustion is catching up with me - from radiation, yes, but also from eight months of shoveling this shit they call cancer. I am spent. But I also have the best cheer section out there. I am supported by this community of mine, and I will finish strong.
Plus, we booked a trip to Mexico. Not soon enough, but it's within sight.
Saturday, April 14, 2012
Biopsy's a Dirty Word
That lymph node I mentioned last weekend? It didn't respond to the antibiotics my oncologist prescribed. In fact, it grew to a painful, golf-ball sized lump under my jaw, and gave me my first real scare since beating cancer.
My oncologist frowned at me on Wednesday, and his words sent a chill up my spine:
"We need to have this biopsied."
Even though I knew it was probably nothing, that broken part of my psyche that was told by a couple of different doctors last summer that the lump in my breast was "probably nothing" had me scared out of my mind. When I went in for radiation Thursday morning, my radiation oncologist and my surgeon both tried to ease my fears. But between the anxiety and the pain, I had a couple of rotten night's sleep this week.
I was referred to an ear, nose and throat specialist, who saw me Thursday afternoon and said all I needed to hear:
"This isn't acting like cancer at all."
I almost hugged him. He went on to say cancer doesn't crop up in 3-5 days' time; it isn't usually tender and hot to the touch; and breast cancer doesn't tend to metastasize to the upper neck. He diagnosed me with an infected salivary gland - because I am the queen of weird diagnoses that are only supposed to afflict people over the age of fifty.
He also switched my antibiotic and said it should start to clear up this weekend. I am supposed to drink lots of water and suck on lemons to increase my saliva production. I am also making my way through a bag of Sour Patch Kids that my sister-in-law bought me.
I'm not out of the woods yet; if these antibiotics don't work, a biopsy could still be on the table. And I can't tell yet if the golf ball is getting any smaller, but it no longer feels like I had my wisdom teeth removed, so that's something. More importantly, it's probably not a lymph node after all, and almost certainly not cancer.
My oncologist frowned at me on Wednesday, and his words sent a chill up my spine:
"We need to have this biopsied."
Even though I knew it was probably nothing, that broken part of my psyche that was told by a couple of different doctors last summer that the lump in my breast was "probably nothing" had me scared out of my mind. When I went in for radiation Thursday morning, my radiation oncologist and my surgeon both tried to ease my fears. But between the anxiety and the pain, I had a couple of rotten night's sleep this week.
I was referred to an ear, nose and throat specialist, who saw me Thursday afternoon and said all I needed to hear:
"This isn't acting like cancer at all."
I almost hugged him. He went on to say cancer doesn't crop up in 3-5 days' time; it isn't usually tender and hot to the touch; and breast cancer doesn't tend to metastasize to the upper neck. He diagnosed me with an infected salivary gland - because I am the queen of weird diagnoses that are only supposed to afflict people over the age of fifty.
He also switched my antibiotic and said it should start to clear up this weekend. I am supposed to drink lots of water and suck on lemons to increase my saliva production. I am also making my way through a bag of Sour Patch Kids that my sister-in-law bought me.
I'm not out of the woods yet; if these antibiotics don't work, a biopsy could still be on the table. And I can't tell yet if the golf ball is getting any smaller, but it no longer feels like I had my wisdom teeth removed, so that's something. More importantly, it's probably not a lymph node after all, and almost certainly not cancer.
Saturday, April 7, 2012
Aches + Pains
"This getting old stuff stinks," I remember my dad saying half-jokingly a time or two when I was in high school. After a career in the military his knees and back were worn from running in boots, on asphalt. His morning yoga routine had lapsed. Instead, some mornings we'd have competitions about who could crack more knuckles - from our fingers to our toes to my left ankle. We were like a Rice Krispies commercial - snap, crackle, pop. At the time, I just thought it was funny; now I know how palliative those pops can be.
I shouldn't be surprised that I have aches and pains of my own now. I am, after all, getting older.
Case in point: two years ago, after a couple of months of excruciating pain, I had a cervical discectomy - meaning, a neurosurgeon went in through my neck to remove a ruptured vertebrae from the uppermost part of my spine. The disc material had been pinching a nerve, and I still have some pins-and-needles sensations in my right index finger because of it.
At the time, my neurosurgeon told me: "You're not exactly the house made of brick." And Chris joked that there must be some provision in our contract about me falling apart before my expiration date. Little did we know.
Still, in my pre-cancer world, it was easy to chalk up a headache to stress, or have a bruised hip and wonder what table I'd run into the night before. These days, though, it's like I'm waiting for the other shoe to drop. Cancer has turned me into a hypochondriac, wondering with every ache whether my doctors missed something - or worse, whether the cancer has already come back.
Last week, I had an echocardiogram done on my heart, and the technician was pretty rough as she moved the instrument around my ribs. But later that night when I had rib pain, I panicked. I didn't make the connection until a few days later, after I'd already run my fingers along the spot over and over, feeling for a tumor (and not finding one), but wondering already how many ribs a person can live without. Of course, now my rib feels fine.
Then yesterday, I sat with my elbow propped on our kitchen counter, my jaw resting in my palm. And the pain I felt in my jaw was enough to throw me straight back into a tear-filled frenzy. I immediately called my oncologist's office, even though I had just seen him that morning. He was gone for the day, but his nurse and Chris (and I, if I'm being honest) are all 99% sure the pain I feel is a swollen lymph node from the cold I can't seem to shake, the cold that's been lingering in our house since the end of February, the cold that delivered a double ear infection to Quinn, who's now on his second round of antibiotics to knock this thing out. That cold.
But in my post-cancer world, it's no longer as easy for me to chalk things up to rational explanations. There is a significant part of me that falls into a tailspin with every twitch, tic, bump or cramp. I need to figure out how to shake that part of me loose - or arm myself with more motrin.
I shouldn't be surprised that I have aches and pains of my own now. I am, after all, getting older.
Case in point: two years ago, after a couple of months of excruciating pain, I had a cervical discectomy - meaning, a neurosurgeon went in through my neck to remove a ruptured vertebrae from the uppermost part of my spine. The disc material had been pinching a nerve, and I still have some pins-and-needles sensations in my right index finger because of it.
At the time, my neurosurgeon told me: "You're not exactly the house made of brick." And Chris joked that there must be some provision in our contract about me falling apart before my expiration date. Little did we know.
Still, in my pre-cancer world, it was easy to chalk up a headache to stress, or have a bruised hip and wonder what table I'd run into the night before. These days, though, it's like I'm waiting for the other shoe to drop. Cancer has turned me into a hypochondriac, wondering with every ache whether my doctors missed something - or worse, whether the cancer has already come back.
Last week, I had an echocardiogram done on my heart, and the technician was pretty rough as she moved the instrument around my ribs. But later that night when I had rib pain, I panicked. I didn't make the connection until a few days later, after I'd already run my fingers along the spot over and over, feeling for a tumor (and not finding one), but wondering already how many ribs a person can live without. Of course, now my rib feels fine.
Then yesterday, I sat with my elbow propped on our kitchen counter, my jaw resting in my palm. And the pain I felt in my jaw was enough to throw me straight back into a tear-filled frenzy. I immediately called my oncologist's office, even though I had just seen him that morning. He was gone for the day, but his nurse and Chris (and I, if I'm being honest) are all 99% sure the pain I feel is a swollen lymph node from the cold I can't seem to shake, the cold that's been lingering in our house since the end of February, the cold that delivered a double ear infection to Quinn, who's now on his second round of antibiotics to knock this thing out. That cold.
But in my post-cancer world, it's no longer as easy for me to chalk things up to rational explanations. There is a significant part of me that falls into a tailspin with every twitch, tic, bump or cramp. I need to figure out how to shake that part of me loose - or arm myself with more motrin.
Thursday, March 29, 2012
Sprout
A little more than three months out from chemo, and my hair is slowly (but surely) making an appearance. I'm just grateful I have eyebrows again. Those things are not easy to draw.
Wednesday, March 28, 2012
Zapped
For the last three days, I've spent about 25 minutes a day being zapped by this machine:
On Day 1, the technician (who's an electrical engineer) spoke to me through the intercom.
"Just keep holding still," she said, after about an eternity of inactivity. "My computer's not talking to the machine."
You've got to be kidding me, I thought. I was certain radioactive lasers were about to turn me into swiss cheese. My heart was pounding in my throat, ready to leap right out before the machine could go ballistic on it. Did that count as holding still? I held my breath, just in case.
It's getting less scary by the day. Only 22 treatments left.
On Day 1, the technician (who's an electrical engineer) spoke to me through the intercom.
"Just keep holding still," she said, after about an eternity of inactivity. "My computer's not talking to the machine."
You've got to be kidding me, I thought. I was certain radioactive lasers were about to turn me into swiss cheese. My heart was pounding in my throat, ready to leap right out before the machine could go ballistic on it. Did that count as holding still? I held my breath, just in case.
It's getting less scary by the day. Only 22 treatments left.
Saturday, March 24, 2012
Survival
I'd thought meetings weren't for me, that they'd be too full of sad stories. In the support group I belong to online, I sometimes hesitate to check the status updates because I can't handle the sadness. One woman posted that she wasn't getting reconstruction because she's stage IV, so she figured what was the point? My brain just doesn't compute that kind of logic. Honestly, it's probably another one of my avoidance coping strategies. But when a woman I knew passed away last week, lost her life to this damn disease, I felt compelled to attend my first young survival meeting.
I knew this woman's passing away wasn't about me, but when I heard the news I still felt like I'd been punched in the gut. I know we all have different stories; everybody's disease blueprint is unique. I know how incredibly lucky I am that I had such a rapid and complete response to chemo. I know that my story isn't her story.
And yet, we are all wrapped up in this together, and so when one of us loses our battle, the rest of our hearts break just a little.
I spent a solid half hour driving to the hospital on the other side of town where the meeting was being held, but I was so hesitant about attending that when I pulled up to the complex at five after the hour, I considered turning around to head home because I was late. Another bald woman rushing up to the building's entrance gave me the guilty nudge I needed to head inside. We rode the elevator up to the second floor together in silence.
As soon as I walked into the meeting room, I felt silly for wearing my wig and prosthetic boobs. But the room was full and by then it was too late to take them off. About a dozen women - half of them either bald or with short buzz cuts - sat around the room, laughing and engaged in conversations with each other. The meeting started with just a quick welcome to the two of us who were new.
A pretty brunette thanked everyone for helping raise money at a comedy show in memory of her best friend, who died at age 33 after a 5-year battle with breast cancer. Not even five minutes into the meeting and I was the one crying. I apologized as I told the group about the woman I'd known, how she left five children behind.
"We've all been there," the director said as she handed me a box of Kleenex.
We had a guest speaker at the meeting, an author who'd written about her journey and spoke about what got her through her battle. A couple of things struck me about her: she was really funny, describing all of the physical changes she'd been through - most of us had been through - since being diagnosed, and she was most certainly not a victim of this disease. None of these women were.
By the end of the meeting, I had taken my wig off (to a room of cheers) to show a woman who'd just started chemo what I look like just three months after chemo. I promised her it wasn't that bad.
The truth is, more and more of us are getting through this, figuring out what it means to be survivors, shoring each other up and cheering each other on - even when it's scary, even when some of us don't make it. Being surrounded by this much strength was much more cathartic than I'd expected. I really need to stop expecting the worst.
I knew this woman's passing away wasn't about me, but when I heard the news I still felt like I'd been punched in the gut. I know we all have different stories; everybody's disease blueprint is unique. I know how incredibly lucky I am that I had such a rapid and complete response to chemo. I know that my story isn't her story.
And yet, we are all wrapped up in this together, and so when one of us loses our battle, the rest of our hearts break just a little.
I spent a solid half hour driving to the hospital on the other side of town where the meeting was being held, but I was so hesitant about attending that when I pulled up to the complex at five after the hour, I considered turning around to head home because I was late. Another bald woman rushing up to the building's entrance gave me the guilty nudge I needed to head inside. We rode the elevator up to the second floor together in silence.
As soon as I walked into the meeting room, I felt silly for wearing my wig and prosthetic boobs. But the room was full and by then it was too late to take them off. About a dozen women - half of them either bald or with short buzz cuts - sat around the room, laughing and engaged in conversations with each other. The meeting started with just a quick welcome to the two of us who were new.
A pretty brunette thanked everyone for helping raise money at a comedy show in memory of her best friend, who died at age 33 after a 5-year battle with breast cancer. Not even five minutes into the meeting and I was the one crying. I apologized as I told the group about the woman I'd known, how she left five children behind.
"We've all been there," the director said as she handed me a box of Kleenex.
We had a guest speaker at the meeting, an author who'd written about her journey and spoke about what got her through her battle. A couple of things struck me about her: she was really funny, describing all of the physical changes she'd been through - most of us had been through - since being diagnosed, and she was most certainly not a victim of this disease. None of these women were.
By the end of the meeting, I had taken my wig off (to a room of cheers) to show a woman who'd just started chemo what I look like just three months after chemo. I promised her it wasn't that bad.
The truth is, more and more of us are getting through this, figuring out what it means to be survivors, shoring each other up and cheering each other on - even when it's scary, even when some of us don't make it. Being surrounded by this much strength was much more cathartic than I'd expected. I really need to stop expecting the worst.
Sunday, March 18, 2012
Inked
I got my first tattoos last week: three pinhead-sized dots around my bra-line. The technicians will use them to line me up under the radiation machine, to ensure they're zapping the same areas each visit. How's that for technology? Primitive, you say? Yeah, my thoughts exactly.
Between the new ink, my buzz cut and my new boyish body, I feel like I have an alternate hipster-punk persona. As my sister-in-law said, I just need a motorcycle and some jackboots to complete the look. She also joked that tequila would have helped. I pointed out that I got my tattoos at 8:00 in the morning. Plus, I don't remember the last time I washed anything down with a shot of tequila (not at 8 a.m., anyway.)
The tattoos were just part of the process to begin my radiation plan, which required a quick CT scan. As I laid there half-naked on the sliding table, my deflated "boobs" exposed, my radiation oncologist came in to check on me.
He advised me that I won't be able to shave or wear deodorant under my right arm during the course of radiation because it could irritate the skin enough to remove it. That did me in. I can handle the scars on my chest, recovering from surgery, being bald and eyebrow-less (although I'm happy to say my hair is getting thicker every day now). I can handle tattoos on my torso. I can handle a lot of things (who knows? maybe even tequila at sunrise). But not shaving my armpits or wearing deodorant for six weeks? Bleck. It's better than having a gaping wound under my arm, but only slightly.
Who out there remembers those "Garbage Pail Kids" trading cards? Specifically Armpit Britt? That's the vision I've got for myself at the end of radiation. I'll be a vision, I'm sure.
And no word yet on when radiation will start; they're still working on my plan. I'm told it should be any day now. I guess I'll take it as a good sign that they don't seem to be in any major rush to get this done. Since I'm in no major rush to braid my armpit hair, we're on the same page.
Between the new ink, my buzz cut and my new boyish body, I feel like I have an alternate hipster-punk persona. As my sister-in-law said, I just need a motorcycle and some jackboots to complete the look. She also joked that tequila would have helped. I pointed out that I got my tattoos at 8:00 in the morning. Plus, I don't remember the last time I washed anything down with a shot of tequila (not at 8 a.m., anyway.)
The tattoos were just part of the process to begin my radiation plan, which required a quick CT scan. As I laid there half-naked on the sliding table, my deflated "boobs" exposed, my radiation oncologist came in to check on me.
He advised me that I won't be able to shave or wear deodorant under my right arm during the course of radiation because it could irritate the skin enough to remove it. That did me in. I can handle the scars on my chest, recovering from surgery, being bald and eyebrow-less (although I'm happy to say my hair is getting thicker every day now). I can handle tattoos on my torso. I can handle a lot of things (who knows? maybe even tequila at sunrise). But not shaving my armpits or wearing deodorant for six weeks? Bleck. It's better than having a gaping wound under my arm, but only slightly.
Who out there remembers those "Garbage Pail Kids" trading cards? Specifically Armpit Britt? That's the vision I've got for myself at the end of radiation. I'll be a vision, I'm sure.
And no word yet on when radiation will start; they're still working on my plan. I'm told it should be any day now. I guess I'll take it as a good sign that they don't seem to be in any major rush to get this done. Since I'm in no major rush to braid my armpit hair, we're on the same page.
Subscribe to:
Posts (Atom)