Chris and I started watching Season 2 of House of Cards last night, and there was one line of dialogue where a guy is talking about grief after losing his wife (not a spoiler, I promise). He says something along the lines of, "I mean, who dies of breast cancer at 31?" Chris and I both laughed awkwardly. It isn't funny.
But it means that -- little by little -- word is getting out about the possibility of death from breast cancer at a young age. It's mentioned in a Netflix TV series, for crying out loud! Maybe, little by little, people are waking up to the reality that this disease is not a "good" cancer, not all pink and happy, not something to be trifled with or taken lightly.
In that vein, I want to do my part to give some recognition to metastatic breast cancer. That's what this blog is about -- shedding some light. But this blog is not quite enough. So I wrote this piece, which was published here. Please take a peek.
I don't know why I'm so nervous to share this here, but I think it relates to how weird I feel about self-promotion. But then, I think if I really want to be brave, I should tell my story to anyone who will listen. I should find as many outlets for it as possible and then do my best to make sure it reverberates.
I hope you'll help me by sharing it far and wide. Shout it from the proverbial rooftops.
Then I'd love to hear your story, too. Tell me how cancer affects you. As Sara Bareilles says, "I wanna see you be brave..."
Tuesday, February 18, 2014
Friday, February 14, 2014
On Trend
I went to get my mullet styled this week. I joined the rest of the world, apparently, with this haircut.
The difference is, I had to wait until my bangs were long enough to pull it off. I know, this doesn't look like long hair to you. But trust me, it is.
Amazing how your perspective changes once you've been bald.
Amazing how your perspective changes once you've been bald.
Wednesday, February 12, 2014
Cheers to a Clean Scan
We got the news this week that my chemo is still working. My PET/CT scan was clean, which is remarkable. There are no signs of malignancies in my body for the second scan in a row. When my oncologist told me the news, I sobbed with relief. Because no matter how much yoga I do, these scans still put me on edge.
The last time I had back-to-back clean scans, I was ending six grueling months of super-toxic (technical term) Taxotere. My fingernails were barely holding on, and I'd said good-bye to my eyelashes and eyebrows months before. But a clean scan meant a break from chemo, and I'd been certain I'd see a long-term remission on maintenance drugs alone.
Just four months later, though, cancer proved that line of thinking wrong. In May 2013, I started TDM-1/Kadcyla, a targeted treatment that's been called the smart bomb of chemo. Every new treatment brings anxiety and trepidation. How would the cancer respond? Would the side effects be tolerable? And, yes: would I lose my hair again?
I'd heard rumors of women being able to stay on this particular drug for years at a time, but didn't quite believe it could happen. Cautiously, I'm starting to feel optimistic this could be me, too. The side effects are tolerable (even if my chemo brain is out of control). I've kept my hair. And most importantly, this drug is working.
Cheers to that.
Wednesday, February 5, 2014
Heavy Stretching
I knew I was supposed to have chemo this week, but I couldn't for the life of me remember what time it was scheduled for. So just after 8 a.m. on Monday I called my oncologist's office to find out, and it turns out I'd forgotten to make the appointment at all. Chemo brain strikes again.
Luckily, they were able to squeeze me in on the infusion schedule in the early afternoon, which also gave me time I wouldn't normally have in the morning to make it to a yoga class. Nothing like a little getting centered (or heavy stretching, as Chris calls it) before poison--ahem, chemo. THIS is what I do with my days, you guys.
And side note, I have a scan next Monday. As much as I'm trying not to be anxious, I'm still a little on edge this week. Pre-chemo steroids don't help. (They don't call it 'roid rage for nothin'.) But I didn't realize how on edge I was until yoga on Monday.
At the beginning of class, my teacher started talking about how yoga is a spiritual practice as much as a physical one, how we come to our mats to create space for good as we release what's no longer serving us--physically, emotionally, or spiritually. None of this is particularly new or earth-shattering, but then he began talking specifics. How feelings of fear or guilt or anger or jealousy can take root wherever there is an absence of love. "So," he said, "the way to drive those emotions out is to breathe in love." Easy for you to say, I thought. You don't have a PET scan next week.
I was irritated with the idea and found myself actually getting angry. What was I supposed to do? I thought. Send some love to my scarred, radiated chest that won't move the way I want it to? Feel love toward my never-ending appointments, scans, and follow-up visits? Love cancer? As I began to move through the postures, though, to stretch and strengthen my body, to marvel in what it could do, I realized my instructor was on to something. As I began to sweat, as my muscles burned in warrior pose, as the familiar calm began to seep in, I realized how frayed my nerves were and how much these scans still hijack me--yes, physically, emotionally, and spiritually--in the days leading up to them.
As much as the stubborn side of me didn't want to admit it, it does help to be more loving with myself. And wasn't that what I'd resolved to do this year, anyway?
I don't have quite as much flexibility in my right pectoral muscles as I do on my left side since I had four lymph nodes removed and five weeks of radiation. But slowly, muscle fiber by muscle fiber, the scar tissue is breaking up and poses I'd figured were out of reach for me are becoming available again. The pain is lessening (although there is still significant discomfort, but I have learned to tell the difference between the two) and my range of motion is improving.
It doesn't take away the fear or anxiety completely, but coming to terms with my body, appreciating it for its strength and--yes, sometimes even grace--helps me accept the scan next week, helps me find peace with where I am today, helps me forgive all that my body and I have been through the last two and a half years.
As we relaxed in shavasana at the end of class, my teacher reminded us to let go of fear, and I realized maybe it's not so easy for him, either. I don't know what struggles he's up against. We all have our burdens to bear. I don't know what anyone else is bringing to their mat. I only know that every time I come to mine I let go of a little more of what holds me back.
Yoga can't help me control what my scan will say next week. And I don't know if my chest muscles will ever open up enough for me to get into king pigeon pose.
But yoga does remind me to find peace with my body--myself--either way.
Luckily, they were able to squeeze me in on the infusion schedule in the early afternoon, which also gave me time I wouldn't normally have in the morning to make it to a yoga class. Nothing like a little getting centered (or heavy stretching, as Chris calls it) before poison--ahem, chemo. THIS is what I do with my days, you guys.
And side note, I have a scan next Monday. As much as I'm trying not to be anxious, I'm still a little on edge this week. Pre-chemo steroids don't help. (They don't call it 'roid rage for nothin'.) But I didn't realize how on edge I was until yoga on Monday.
At the beginning of class, my teacher started talking about how yoga is a spiritual practice as much as a physical one, how we come to our mats to create space for good as we release what's no longer serving us--physically, emotionally, or spiritually. None of this is particularly new or earth-shattering, but then he began talking specifics. How feelings of fear or guilt or anger or jealousy can take root wherever there is an absence of love. "So," he said, "the way to drive those emotions out is to breathe in love." Easy for you to say, I thought. You don't have a PET scan next week.
I was irritated with the idea and found myself actually getting angry. What was I supposed to do? I thought. Send some love to my scarred, radiated chest that won't move the way I want it to? Feel love toward my never-ending appointments, scans, and follow-up visits? Love cancer? As I began to move through the postures, though, to stretch and strengthen my body, to marvel in what it could do, I realized my instructor was on to something. As I began to sweat, as my muscles burned in warrior pose, as the familiar calm began to seep in, I realized how frayed my nerves were and how much these scans still hijack me--yes, physically, emotionally, and spiritually--in the days leading up to them.
As much as the stubborn side of me didn't want to admit it, it does help to be more loving with myself. And wasn't that what I'd resolved to do this year, anyway?
I don't have quite as much flexibility in my right pectoral muscles as I do on my left side since I had four lymph nodes removed and five weeks of radiation. But slowly, muscle fiber by muscle fiber, the scar tissue is breaking up and poses I'd figured were out of reach for me are becoming available again. The pain is lessening (although there is still significant discomfort, but I have learned to tell the difference between the two) and my range of motion is improving.
It doesn't take away the fear or anxiety completely, but coming to terms with my body, appreciating it for its strength and--yes, sometimes even grace--helps me accept the scan next week, helps me find peace with where I am today, helps me forgive all that my body and I have been through the last two and a half years.
As we relaxed in shavasana at the end of class, my teacher reminded us to let go of fear, and I realized maybe it's not so easy for him, either. I don't know what struggles he's up against. We all have our burdens to bear. I don't know what anyone else is bringing to their mat. I only know that every time I come to mine I let go of a little more of what holds me back.
Yoga can't help me control what my scan will say next week. And I don't know if my chest muscles will ever open up enough for me to get into king pigeon pose.
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| [photo credit] |
Wednesday, January 29, 2014
The Days, They Are Long
I went to a work happy hour last week. I know, I'm not even working, but there was a meeting here in Phoenix that meant a lot of my colleagues were in town from all over the country. I don't know if or when I'll go back to work, but it was so good to catch up with these people, some of whom I hadn't seen in eight months (or more). My former boss was here from Denver, and it was lovely to see her and share photos of our kids over beers.
And then I was happy to get home in time to read Quinn a bedtime story and tuck him in.
I realized I miss certain things about working in an office: the regular adult interaction, for example. But staying home with Quinn is good for my soul. As I explained to a couple of people that evening when they asked the inevitable question about me returning to work, I feel like I'm tip-toeing a fine balance right now and for the moment it's working for me. My last scan was good, my weight is up, my blood counts are mostly okay, and--most weeks--my fatigue is manageable. (Although I've had some other health issues lately, but I'm not sure I'm ready to write about that yet.) I am scared that if I were to add one more element to the mix, I'd fall off this high wire act I've got going. So my answer to them was: not yet.
Also, with the number of doctors appointments I've got every week, it wouldn't be fair to my team. I spend half the day most Mondays at or on my way to (or home from) appointments. Plus there are scans, follow up visits with my oncologist, not to mention "normal" appointments with my gynecologist, dentist, dermatologist, therapist... Plus Quinn's check-ups. It's a lot.
So I expected the question about returning to work. What I didn't expect was the question about what it is I do with my days.
I don't think the guy who asked it meant any harm, but I was caught off guard--and irritated, if I'm being honest. I sort of let the question linger, so I'm sure it became as awkward for him as it was for me. Because--how do you answer such a thing? I don't remember what I said. Probably something to the effect of, "Crazy how raising a 2-year-old can take up so much time!" Later, I thought I should have just said, "Laundry. I spend all of my time doing laundry." It feels that way some days.
This is not the first time I've gotten this question. I think most stay-at-home-parents grapple with it at some point, unfortunately. So I've been trying to give it a little thought the last few days. What do I do with my time (now that I'm not working)? I did think I'd have more free time, time to organize photos of Quinn or write or clean out my belly button lint. All of the stay-at-home-parents are laughing right now at my naiveté. I at least thought Quinn would nap.
There are my appointments. And Quinn (who does not nap, and hasn't at home for about a year). On the days he's not in school/daycare, I try to do things with him--swimming, the Children's Museum, the train park, the zoo) rather than spend my time with him cleaning the house or running errands. Then there's the aforementioned laundry. There is also sleep. We cancer patients need a lot of it. I typically get 8-9 hours per night, and I'm still fatigued. My younger self is embarrassed at my laziness, but I can't help it. This disease makes me tired.
I also try to exercise to combat the fatigue. On the days Quinn's in preschool and I don't have doctors appointments, I try to make it to yoga or on a hike.
I try to find time to write. I try to find time to be a friend. I try to find time to nurture my relationship with Chris. I try to stay present, so that I'm not anxious about my future. Because as the saying goes, the days are long but the years are short.
Why do I even feel the need to write this post? To justify what it is I do all day? Part of it is how competitive I've always been, how results-oriented, how type-A. The question about how I spend my time broke open some insecurities I've felt since I stopped working. But my insecurities these days are less about cancer winning, and more about what I'm contributing to the world.
Because I don't have much to show for my days at home, except an almost-three-year-old who challenges (and rewards) me in ways my job as a lawyer never did. I am raising a little man, which I know is as important as any career. So why do I still feel the need to prove the value in that? Why did one little question ruffle my feathers so fiercely and put me on the defensive? I'll let you know if I figure out the answer, but I'd also love to hear your thoughts.
And then I was happy to get home in time to read Quinn a bedtime story and tuck him in.
I realized I miss certain things about working in an office: the regular adult interaction, for example. But staying home with Quinn is good for my soul. As I explained to a couple of people that evening when they asked the inevitable question about me returning to work, I feel like I'm tip-toeing a fine balance right now and for the moment it's working for me. My last scan was good, my weight is up, my blood counts are mostly okay, and--most weeks--my fatigue is manageable. (Although I've had some other health issues lately, but I'm not sure I'm ready to write about that yet.) I am scared that if I were to add one more element to the mix, I'd fall off this high wire act I've got going. So my answer to them was: not yet.
Also, with the number of doctors appointments I've got every week, it wouldn't be fair to my team. I spend half the day most Mondays at or on my way to (or home from) appointments. Plus there are scans, follow up visits with my oncologist, not to mention "normal" appointments with my gynecologist, dentist, dermatologist, therapist... Plus Quinn's check-ups. It's a lot.
So I expected the question about returning to work. What I didn't expect was the question about what it is I do with my days.
I don't think the guy who asked it meant any harm, but I was caught off guard--and irritated, if I'm being honest. I sort of let the question linger, so I'm sure it became as awkward for him as it was for me. Because--how do you answer such a thing? I don't remember what I said. Probably something to the effect of, "Crazy how raising a 2-year-old can take up so much time!" Later, I thought I should have just said, "Laundry. I spend all of my time doing laundry." It feels that way some days.
This is not the first time I've gotten this question. I think most stay-at-home-parents grapple with it at some point, unfortunately. So I've been trying to give it a little thought the last few days. What do I do with my time (now that I'm not working)? I did think I'd have more free time, time to organize photos of Quinn or write or clean out my belly button lint. All of the stay-at-home-parents are laughing right now at my naiveté. I at least thought Quinn would nap.
There are my appointments. And Quinn (who does not nap, and hasn't at home for about a year). On the days he's not in school/daycare, I try to do things with him--swimming, the Children's Museum, the train park, the zoo) rather than spend my time with him cleaning the house or running errands. Then there's the aforementioned laundry. There is also sleep. We cancer patients need a lot of it. I typically get 8-9 hours per night, and I'm still fatigued. My younger self is embarrassed at my laziness, but I can't help it. This disease makes me tired.
I also try to exercise to combat the fatigue. On the days Quinn's in preschool and I don't have doctors appointments, I try to make it to yoga or on a hike.
I try to find time to write. I try to find time to be a friend. I try to find time to nurture my relationship with Chris. I try to stay present, so that I'm not anxious about my future. Because as the saying goes, the days are long but the years are short.
Why do I even feel the need to write this post? To justify what it is I do all day? Part of it is how competitive I've always been, how results-oriented, how type-A. The question about how I spend my time broke open some insecurities I've felt since I stopped working. But my insecurities these days are less about cancer winning, and more about what I'm contributing to the world.
Because I don't have much to show for my days at home, except an almost-three-year-old who challenges (and rewards) me in ways my job as a lawyer never did. I am raising a little man, which I know is as important as any career. So why do I still feel the need to prove the value in that? Why did one little question ruffle my feathers so fiercely and put me on the defensive? I'll let you know if I figure out the answer, but I'd also love to hear your thoughts.
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| {Quinn takes a selfie} |
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