Tuesday, December 31, 2013

Merry + Happy

I'm not the only one feeling the madness these days, right? Christmas is over, our cards made it out the door on time, there are no more presents to wrap or cookies to bake, and I still feel like I hardly have a minute to breathe, let alone string together coherent sentencesThere's probably a New Year's resolution hiding in there somewhere.

Part of the non-stop nature of the season is that Quinn's daycare takes a two-week break this time of year. And Quinn does not take a break, ever. I mean, would you be able to nap if Santa had just dropped off a sleigh-full of new toys at your house? No, neither can my little guy.

So I have been busy engineering train tracks and launching rockets and traveling to the moon and going on pirate adventures the past week. My life could be worse. I am immensely grateful for this time.

But I've also been trying to find time to sit and reflect, to write down some of that reflecting here, to remember and take note of all--or at least some of--the things that make the holiday season so wonderful. Because if I take note of it, in some small way, it will last. Right?

I have so much to be grateful for, and what better time to reflect on that than year's end?

There is Quinn, of course. Quinn, with his "Merry Chris'em!" and "Yook! Chris'em yights!" and "It's Chris'emtime!" We may never speak English the same again in this household. (Have I told you about the "rainis bars"? We haven't used the word "raisins" since Quinn introduced us to "rainis-es.")

I love that he giggles when he hears "Santa, Baby" playing on the radio, and responds with, "Awwww, that's so cute!" because he pictures Santa in diapers.

I love that he adamantly says, "Santa Claus is NOT coming to town! Santa is."

I love that he marvels at peoples' Christmas lights as much as I do, sees the magic in them, is already witty enough to make a joke about how it must've hurt to wrap lights around the Saguaro cactuses.

There is Chris, stringing lights so I won't have to, reading dinosaur Christmas stories to Quinn before bed, mostly keeping his cool even though his important research trip to Ethiopia in January fell through (for the time being), warming my cold feet with his under the covers at night, and burning a wish with me in our fireplace just before midnight on the solstice because I'd wanted to continue the tradition his colleague started for us a few years ago. I don't know what Chris wished for, but I'll admit I wanted to do this ritual again to ensure my wishes keep coming true.

There is my health, obviously. No news is good news, and for now, all is quiet on the cancer front. I had chemo on Christmas Eve, so I wasn't feeling particularly well on Christmas day, but what better holiday to stay in your pjs until 3 in the afternoon, sipping tea and staving off nausea with comfort food? I can't think of one. I even cheated and had a glass of wine with Christmas dinner.

There is what my body is able to do, and I don't just mean cancer-wise. I can hold a handstand in yoga for a few breaths (next stop, "chin pose"). I can play hide-and-seek with Quinn. I can go hiking less than a week post-chemo. I don't take a second of that for granted, and am usually the one on the trail grunting "Fuck you, cancer" under my breath the whole way up. Last weekend, even though I didn't make it quite to the top of the mountain, I got to see this incredible view along the way.
There are our friends and family, who encourage us daily. We are so fortunate. Our lives are so filled with love. The giant stack of holiday cards we've received is a testament to that. I love the mailbox this time of year.

We have been through the ringer the last few years. We have grieved the death of Chris' dad, witnessed the unraveling of my parents' marriage, and dealt with my cancer diagnosis and its repercussions. But we also had Quinn, bought a new house this year, and Google+ just sent me this video, an eerily timely reminder of what a great year it's been.
video
Happy 2014, you guys. 

Monday, December 16, 2013

Love/Hate

I never meant to take a month-long break from this space. Life--and the holidays--just sort of took over. I've been busy baking and decorating sugar cookies with Quinn, making waffles at his preschool's breakfast-with-Santa event (where the waffle makers kept shorting the fuses in the fellowship hall and the line for waffles kept getting longer and some of the waffles we sent out may have been undercooked), and I don't even know what else. Last-minute shopping? Getting our Christmas cards out the door? Complaining about how cold my feet are whenever it drops below 65 here? Hiking Camelback with Chris?
It's a good kind of busy, and it has been nice not to give as much attention to cancer over the past few weeks. Well, my own cancer anyway. Which brings me to something I've been thinking about quite a bit lately.

I have a love/hate relationship with social media.

On the one hand, it brings my attention to stories like this, which renew my faith that I will be okay. I will live to see Quinn graduate from high school. Because even when you think there are no options left, there are mad (aka brilliant) scientists and billionaires working on flies to come up with tailored options for treating cancer. This is one of the coolest things I've read this year. I don't usually read Esquire. I probably wouldn't have seen this story but for social media.

I also love the community of it, because sometimes you need to have a 2 a.m. conversation with other people who are also suffering from steroid-induced insomnia and hot flashes, even if you've never met each other in person. On Monday nights, I try to participate in a chat on Twitter that uses the hashtag #bcsm, for "breast cancer social media." It's typically around the same time I'm trying to get dinner on the table and Quinn cleaned up and ready for bed, so I don't always participate so much as hang out on the sidelines or read the transcripts after the fact. I don't know the numbers, but a lot of people--from survivors to caregivers to practitioners--join these chats, which are moderated by a couple of survivors and a breast surgeon. It is a way to connect with others who know exactly what you're going through. One week, I commented that it was like showing up at the bar in Cheers, where everyone knows your name (or at least your side effects).

The topics of these Tweetchats change weekly. In November (and of course I'm late to the game on this--typical), the focus one week was "the invisible scars" of breast cancer. Women mentioned all kinds of things, from infertility to poor body image to trouble with intimacy to the lasting effects of chemobrain. For me, the answer was all of these things, yes, but far and away fear has always been the most obvious and lasting of my scars from this disease. Fear of more mets, fear of progression, fear of leaving my family too soon. Talking about these fears helps release their grip. Talking about them with people who are also experiencing them as intensely as I am reminds me that maybe I'm not completely crazy.

On the other hand, social media can be a scary place for me. Scrolling through my Facebook feed as we boarded our flight home from visiting my dad over Thanksgiving, I learned that a friend had died right after the holiday. Breast cancer took her from her two daughters, ages 8 and 11, who will now not have their mom around for Christmas or for when they start middle school or learn to drive or any of those other wonderfully ordinary events every parent and child should get to share. I saw the news just after I had buckled Quinn in to his seat next to mine, and I didn't even try to stop my tears.

Between sobs, I told Chris I was done with Facebook, that I couldn't take it anymore.

A couple of weeks earlier, I'd learned (via Facebook messaging) that another friend's cancer had spread to her brain, where most chemo can't travel because of the blood/brain barrier. She would need what's called whole brain radiation, which is probably about as fun as it sounds. And last week, another friend got the same news, just weeks after absorbing the shock that cancer was in her liver. As the rest of us race around marking items off our Christmas lists and hurrying to get cards out on time, these women are rushing to meet with specialists to come up with new treatment plans, in order to stop breast cancer in its tracks, in order to--we hope--spend more Christmases with their loved ones.

Facebook and Twitter aren't always the most personal communication tools, but they're how many of us with cancer share our news to friends far and wide. They provide an easy delivery system, and can bring forth huge bastions of support. Most people who read this blog link to it from Facebook.

With every loss, though, every piece of shitty news, I swear off social media for awhile. Bad news stirs up so many fears for me that it can be immobilizing. Coming across an errant status update before bed can leave me up worrying half the night. I haven't mastered the art of shutting off my emotions, of removing myself from the disease enough to just listen and advocate. Not yet.

I have also struggled over the past few weeks with how to enjoy the relief I feel over my clean scan at the same time as the grief I feel about my friends who aren't doing as well. I've been so lucky. I have consistently responded to treatment. I thank my lucky stars every day for that. For now, at least, I am not leaving this family.
Like it or not, I am part of this online community, this cancer community that brings bad (and good) news, often in quick succession. Another friend recently posted that a spot on her liver is benign. Someone else that the tumors in her brain are dying; treatment is working. For stories like these (and the cute kids on Santa Claus' lap you guys keep posting), I am usually back to my social media feeds within 24 hours. Because don't shoot the messenger, right? Facebook isn't the problem. Cancer is.

Monday, November 18, 2013

Results Not Typical

My head is still spinning from my meeting with my oncologist Friday morning. They always say to take a tape recorder to these appointments, and you know what? They're right. Because it's impossible to remember how everything is said, what specific words or tone of voice are used, which questions you asked versus which ones you just thought in your head but forgot to say out loud. Before you know it, you're being shuffled down the hall for blood work and told he wants to see you again in a month.

Here's what I do remember.

My heart was racing and I felt like I was going to vomit. I grabbed a few tissues out of the box so I wouldn't be caught off guard if he came in with bad news. When he walked in and announced, "No cancer!" I realized I'd been holding my breath.

It feels so good to breathe again.

My results are not typical. I am lucky beyond measure that I am responding this well to treatment. Aggressive breast cancer like mine was does not normally wax and wane the way mine has, even with the world-class drug options I've got. My oncologist told me he was perplexed by my case and up all night trying to figure out what we should do next -- meaning, should I continue to take chemo for a cancer that (for now, at least) appears to be gone?

I have been in this position before. After my first round of chemo, just two days before Christmas 2011, I got the news that my scan was clean. Seven months later, the cancer was back and I started my second round of chemotherapy. Two clean scans and six months of grueling treatment later, I got to take a break in January of this year. By May, the cancer had reappeared.

For now, I am winning this game of whac-a-mole.

So when my oncologist asked me whether I wanted to continue on my current drug or take a break and see what happens, I asked whether there were any long-term toxicity effects for TDM-1/Kadcyla. Being told that there are not, I opted to maintain my current treatment and continue getting infusions every three weeks. There are side effects, yes, but it's a trade off I'm willing to take to keep cancer at bay and my sanity within reach.

We'll reassess in another three months, with another scan and decisions to make based on what it shows (or doesn't). I have heard rumors of women being able to stay on this drug for years. These types of claims cause hope to take root. And sometimes you just need a little glimmer of hope to hang on to.

***

Last weekend, to try to take my mind off my upcoming scan and get out for an overdue date night, Chris and I went to see Gravity in 3D. Chris didn't love it, but I couldn't stop thinking about it for days afterward. I think the last paragraph of this review sums up why:

If anyone asks me what "Gravity" is about, I'll tell them it's a tense adventure about a space mission gone wrong, but once they've seen and absorbed the movie, they'll know the truth. The root word of "Gravity" is "grave." That's an adjective meaning weighty or glum or substantial, but it's also a noun: the location where we'll all end up in time. The film is about that moment when you suffered misfortune that seemed unendurable and believed all hope was lost and that you might as well curl up and die, and then you didn't. Why did you decide to keep going? It's is a mystery as great as any in physics or astronomy, and one we've all grappled with, and transcended.

Thursday, November 14, 2013

3...2...1...Xanax

I had a PET scan this morning, my eighth one since I was diagnosed in August 2011. Somehow, it hasn't gotten any easier to handle the emotions leading up to these things. Predictably, a couple of weeks ago I started getting a little more irritable and a little more sappy than usual.

I start wondering if it's worth it to plant a garden or buy a new pair of jeans because you just never know. A bigger issue than my cancer, garden-wise, is that I am like hospice for plants, my thumb is that black. But still, I start getting anxious about all of the things in my life, not just cancer. Did I remember to shut off the oven? What is that bump on Quinn's neck? Please, God, don't let Chris get deep-vein thrombosis from all his traveling. These thoughts are not helpful and some even border on ridiculous, but that's anxiety.

So when the technician came over to let me out of the machine after my scan this morning, I said, "God, I hate these things," and she replied, "Really? You could have fooled me. You looked so calm in there." Clearly, I missed my calling as an actress.

To be clear, it's not the scan that induces my anxiety, but the results, which I will find out tomorrow.

Worst case scenario: the scan shows progression, meaning the drug I'm on has stopped working. I would have to switch drugs, which would mean a return to something more toxic and all it entails: hair loss, nausea, destroyed immune system, lots of crying.

Also, the longer you're responsive to a particular drug, the better, because -- well, time. Time that researchers can come up with other treatments, time you get to spend with your family, time the cancer -- as one friend described it recently -- spends in a box, doing no damage.

Best case scenario: no evidence of disease (NED), which I last experienced ten months ago. This would mean that the drug I'm on is continuing to work, and work remarkably well. This is the holy grail of cancer statuses. Some women -- I've heard -- have been NED for years on the drug I'm on.

Second-best case scenario: stable/no progression/slight decrease in cancerous activity and/or size of tumors. This would also be acceptable.

If it's either of the two latter cases, I will stay on my current medication, which isn't side-effect free, but it's tolerable. Tolerable is so so SO nice, and it would also mean I'd get to have hair for my first holiday season since 2010.

***

I arrived at the hospital at 7:30 this morning. I have to walk across this bridge from the parking lot to the PET/CT center, which was deceptively peaceful at such an early hour.
I had to sign several forms assuring them I'm not pregnant, they tested my blood sugar, and then they injected me with radioactive glucose. Nothing felt different. I didn't ask any questions; I know the routine. I am becoming old hat at this.

As she shuffled me out the door almost two hours later, the technician told me to have a great weekend. I thought, Well, that depends, but I simply told her, "You, too." I was a little worried I'd start crying or read something newsworthy on her face if I got snarky with her.

Tomorrow I get my results, and then I can lay off the Xanax for a few more months until it's time for the next one of these things.

I'll let you guys know how it goes. Here's hoping for a great weekend.

Sunday, November 10, 2013

Throwing Spaghetti at the Wall

For our fifth wedding anniversary last month, I had my makeup done professionally. Chris and I were going out to dinner, and I wanted my eyebrows to look better than when I do them myself. Nearly a year post-chemo-chemo (which is how I might have to refer to it from here on out), I have to shave my legs twice a week but my eyebrows and eyelashes remain scarce.

Cancer, you're an unfair bitch, you know that?

Here's the best photo we took that night, which isn't all that great (poor lighting, taken by the babysitter using my phone after Chris and I split a bottle of wine at dinner), but I am happy with my eye makeup. And my handsome husband.
As I was being beautified for my date, I got to talking with the makeup artist about cancer. His brother is a colon cancer survivor, and he was curious about what I was going through. I explained that mine was Stage 4 from the beginning, so I'm still in treatment. 

And as he was applying my blush, he followed up with this zinger: "Didn't you feel a lump or anything?" which is kind of like asking a lung cancer patient whether they'd been a smoker. 

This question, these types of questions get to the heart of so many excruciating feelings I carry with me (but am trying to shed). Why didn't I catch it sooner? What did I do wrong? Why me?

This question, these types of questions are looking for a smoking gun. I get it. We want to be able to explain cancer, to find the thing that makes us different so we can assure ourselves cancer won't happen to us. We want to have control. 

It isn't easy to accept such a monumental lack of control. That is part of what makes cancer -- and life, if you want to extrapolate -- so frightening. So I control the things I have any say over: my attitude (sometimes), how I spend my time, who I surround myself with, what treatments I undergo, how much wine and chocolate I consume. What I cannot control is how any of those things will affect my outcome. Simply, I cannot control how long I'll live. I'm not that much of a superwoman. Yet.

When you're given a cancer diagnosis, though, you get bombarded with a million suggestions about what to eat (or not), what type of medicine to take, who to pray to, which surgeries to endure -- in order to (presumably) live a longer life. In order to pretend you've got some control. 

Maybe I wouldn't have gotten cancer if I'd eaten less pasta, but I like pasta. And I know plenty of people who eat more carbs than I do and never develop cancer. Maybe I could get rid of my cancer if I had more Vitamin C (or D, I forget) in my diet, but so far as I can tell, the science isn't there. In fact, my oncologist and my naturopath have given me the absolute opposite advice about my Vitamin C intake, so I take a multivitamin and drink the occasional glass of orange juice, but I haven't opted for intravenous infusions of it. And maybe my double mastectomy was superfluous, as one oncologist suggested months after I'd had both my breasts amputated, but you know what? The surgery made me feel safer. 

I go through periods of extreme second-guessing about what I could have done to bring this on. Then I stop beating myself up and remember the numbers. Also: why anyone? Here's the hard truth: one in eight women will get breast cancer. One in thirty-six will die from it. A harder truth? Half of all men and one in three women will get some form of cancer in their lifetime. Cells mutate for inexplicable reasons -- whether we practice yoga or never eat fast food or take our makeup off every night before bed. We can follow all the rules and still get cancer. It is that random.

We can pay attention to our bodies, we can catch cancer earlier if we're lucky, we can even prevent some types of cancer, and we can take care of ourselves so that our bodies are equipped as best as they can be to fight off disease. And then cancer may still show up unannounced, may still metastasize, may still take us from the people we love much earlier than we'd like. We simply do not know how to stop that from happening. Yet.

When you're given a cancer diagnosis, you do what you can to get through, even if you're just throwing a whole bunch of spaghetti at the wall and hoping some of it sticks. Plus, sometimes throwing things at walls is exactly what you need after a cancer diagnosis. 

Wednesday, November 6, 2013

A Selfie

I have about a half-dozen half-written posts about a number of things: the invisible scars of breast cancer, trying not to blame myself for Stage 4 cancer, having the hard conversation with my mom about my fears, my scan next week, and managing being a parent while in the throes of treatment. But while my scatterbrain works out the details of how best to finish those and share my thoughts with you all, I thought I'd update you on my hair. 
It has been awhile, after all.

I got it cut this week, while I try to let the sides and top catch up to the party in the back. And I'll probably keep it short, but I want any pixie cut to be my decision, not just the only option because that's how chemo left things. Who knew I was such a control freak? 

Also, for those of you keeping track, my hair's texture is changing, and I don't know if that's the length (relatively speaking) or being nine months post-chemo-chemo. It's still got wave and body, but less actual curl now. One of these days, maybe my bedhead will even calm down.

In the meantime, I'm hoping I get to keep playing with it just a little while longer. My scan next week will determine whether I get to continue on my current chemo or have to switch things up, which would probably mean putting my wigs back in rotation. For the record, I much prefer my own hair, crazy bedhead and all.

Monday, October 28, 2013

An Advocacy Request

I'm just going to come right out and say it: I am beating the odds already. There are all kinds of statistics out there for the survival rates of patients with Stage 4 breast cancer. Most of them are pretty grim.

After all, there is no Stage 5.

And of course I can't remember where I saw it, but I've read a few times that the median survival time once metastases are detected is twenty-six months. That's not that many months. Ask any mother.

Only about one in five people with Stage 4 breast cancer live to see their five-year cancerversary. Go ahead and re-read that sentence. I'll wait for you.

Of course, there are a million factors that determine how any one person will fare -- extent of metastases, responsiveness to treatment, overall health other than cancer, sheer dumb luck, to name a few. So it's nearly impossible to predict accurately how long someone will live once diagnosed with cancer, and my doctors have never given me a timeframe, other to say they can treat this for years.

Then again, I've never had the heart to ask, "How many years?"

Deep breath. As of about a week ago, it has been twenty-six months since I was first diagnosed. Twenty-six months that I've been living with breast cancer. Twenty-six months since that August afternoon in Phoenix when my blood ran cold and my mouth went dry and I knew the lump was too large to be good news but I researched the statistics for survival anyway because that's what we are led to believe: everyone survives breast cancer. It's PINK, for God's sake. 

I plan to continue beating the odds, to the extent I have any control over it, which, quite honestly, I don't. I'm saving that rant for another post. Please come back in a few days.

This is when I have to remind myself of something my father-in-law often said after he was diagnosed with pancreatic cancer: Statistics don't mean anything to the individual patient. Every body is unique. Every story is different.

Still, it is hard not to take note when you pass certain milestones, especially after you've seen so many friends die. On the other hand, I've also seen many friends live. I know a number of women who are living full lives with Stage 4 cancer five or ten years out from their initial mets diagnosis. "What's your secret?" I want to ask each of them, as if there were a single right answer, as if I could take any one of the suggestions that has been proffered to me from people without cancer (avoid all sugar, don't use plastic, don't eat anything processed, clear your energy fields, tie up emotional loose ends, drink a juice from a guy I know in Mexico, visit this guy I've heard about in Brazil, drink more red wine, avoid all alcohol, and on and on) and -- poof! -- I'd get to live another dozen years, and then a dozen after that if I'm really lucky. It would be nice if it were that simple, wouldn't it?

During the Avon Walk I did last month, I met a woman who was diagnosed Stage 4 nearly eighteen years ago, and continues to stun her doctors with how well she's doing today. She's an outlier; these cases aren't typical. But I think every one of us facing this disease wants to be that outlier, the one who's walking 39.3 miles over a weekend twenty years removed from when the disease first struck.

After all, Stage 4 breast cancer wasn't supposed to happen to us, either. For those of us as young as I am, we are already statistical anomalies, so why not aim for winning the lottery, too? It could happen.

As Breast Cancer Awareness month comes to a close, please think about the fact that, currently, only about five percent of research dollars are spent studying metastases, even though mets are responsible for every death from breast cancer. Maybe if we focused our efforts a little more, more than one in five of us would make it past the five-year mark. Maybe more of us could start to live with this disease long-term. Maybe more of us could watch our children grow up.

As the month comes to a close, I urge all of you to write your Representatives and Senators (as incompetent as they may seem lately) to maintain science research funding levels, specifically the Department of Defense's Breast Cancer Research Program and the National Cancer Institute. If you've never written Congress before, here's what I wrote to my own Congresswoman (feel free to use the parts of it that make sense for your letter):

Dear Rep. Sinema,

I was just 32 years old when I was diagnosed with Stage 4 breast cancer. My son was an infant, and I was nursing when a pesky lump wouldn't go away. By the time my doctors took me seriously, it had spread to my lungs, spleen, and lymphatic system. 

Today, I still receive chemotherapy every three weeks, and the cancer is stable. I have been in treatment for more than two years now. I have lost my breasts, my fertility, my hair (twice), and a number of friends to this disease. 

I am one of the lucky ones because I am still here. 

As breast cancer awareness month comes to a close, I hope that we can begin to move beyond awareness toward better education about the realities of breast cancer and, one day, a cure. 

As Congress -- I hope -- moves toward a consensus on a budget and long-term funding for our government, I urge you to press for continued funding of what we really need in this breast cancer fight: more research. Please vote to maintain consistent funding levels for the Department of Defense's Breast Cancer Research Program as well as the National Cancer Institute. 

Forty thousand people lose their lives to breast cancer every year in this country. Those of us living with this disease live our lives in three-month increments as we wait for results from scans that tell us whether our current treatment is working or that we've run out of options. We need more options, and quickly. 

My little boy is depending on it.

Sincerely, 
Jennifer Campisano

In what seems like a previous lifetime, I was a congressional lobbyist in Washington. I might as well draw on that knowledge for something, right?

Friday, October 18, 2013

The Kissing Hand

Quinn's new school has fall break this week, but one of his teachers offers care in her home instead. She calls it "Fall Break Boot Camp," and they do arts and crafts, sing songs, and most importantly from my perspective, take afternoon naps. Many working parents can't afford to take the week off, so it's nice to have the option of consistent care, with a teacher we trust and the friends our kids are used to.

Since I'm not working, I debated keeping Q home with me all week. What excuse did I really have, other than I want to do some writing and make it to yoga a couple of times and maybe grocery shop without having to fight about the car seat at every stop? I mean, what excuse other than cancer?

I forget sometimes that it's there, that I'm supposed to be resting, that my body is doing a lot of work right now. A friend of mine said her oncologist told her to expect to have about half the energy a normal person has, which makes me feel better when I have trouble keeping up with Quinn and let him watch more "Bob the Builder" than I probably should.

In clothes, I look almost normal, other than the port in my chest (which I realize I have talked about a lot, but not sure I've ever shown you guys, so here it is in all its glory).
And my hair looks like Princess Diana circa 1992, but it's MY HAIR. (See below -- I'm not kidding about the hair, right? I've got an appointment to fix that in the next couple of weeks, in case you were worried.) My eyebrows still haven't quite grown back, either, but otherwise, I look mostly okay. More importantly, I feel mostly okay. I can still go hiking and make it to yoga and take Quinn to swimming lessons, and I am so lucky for that. My quality of life on this chemo is amazingly normal, relatively speaking.
But then I fell asleep with Quinn on his twin bed at 8 o'clock last night, and when I woke up confused and groggy just before midnight, it came pounding into my head like a hangover -- oh, yeah, cancer. And I've got chemo on Monday. And scans next month. And then I might have eased myself back to sleep with some Xanax.

So in the interest of continuity and my health, I took Q in to school Wednesday and today. Wednesday was fine, but drop-off this morning was rough. He didn't want to be there in the first place, and right in front of me another little boy bit Quinn's arm, which made him even more clingy. I stayed to console him for a good fifteen minutes, maybe longer, as he cried in my lap.

Then one of the teachers suggested a book, "The Kissing Hand," which is about a mom's love always being with her kiddos, and theirs with their moms, even when they're away from each other. The story is about a raccoon on his first day of school, but it struck me that it's relevant to any separation from a parent.

As I was reading this to Quinn in the middle of the playroom floor, I felt a hard knot tighten in my throat, and I tried to pass my sniffles off as allergies: "Chester felt his mother's kiss rush from his hand, up his arm, and into his heart." Whenever Chester feels lonely at school, all he has to do is press his hand to his cheek to feel the warmth of his mother's kiss. "Do you feel that, too?" I asked Quinn, with my hand over his heart. My little boy nodded, and I struggled to keep my composure.

I was choked up for the same reason I pause just a bit at the refrain the teachers tell the kids when one is having a rough day: "All mommies come back." How I wish. I hate knowing otherwise, and I try to keep that anxiety of mine from Quinn, although he's been biting his nails lately, so I'm not sure how successful I am.

Anyway, drop-off this morning was rough for me, too. I started sobbing before I even got back to my car. I know Quinn needs to learn he's okay without me at school, and he will be okay when I die someday--all of us eventually are, but--god, do I want more time with him, and to continue to feel well enough to enjoy it.

I'm continually trying to find that balance between spending enough time with him (as if there were such a thing--ha!) and not wearing myself out. Other moms (with cancer or not, working or not), I'd love to hear how you find that balance in your lives.

On that note, I'm off to pick up my monkey to spend the afternoon with him.

Sunday, October 13, 2013

October 13th

In case you missed it, October 13th (yesterday) was National Metastatic Breast Cancer Awareness Day. I thought about doing a post on the reasons this day is so important for women like me with metastatic disease, but instead I got bogged down in watching terrible local news coverage of the Komen Race for the Cure here in Phoenix, which focused so much on victory over cancer and the racers' fun costumes that I wanted to scream.

I'm becoming an old curmudgeon well before my time.

* Full disclosure, I've done the Komen race, and it makes me just as uncomfortable in person.

As far as I noticed, there wasn't a single mention of advanced disease--or even the possibility of it--in the Komen coverage. Yes, early detection increases the odds you'll beat breast cancer, but it's still no guarantee that mets won't show up later. In fact, 20-30% of everyone diagnosed with breast cancer will at some point down the road develop metastases. It may even be after the magical 5-year mark.

Sound too crazy to be true? Read more about the facts here.

At some point, we need to stop the madness of packaging this disease in pretty pink ribbons and talk about what's really happening: approximately every 15 minutes a woman dies in this country because of breast cancer. All of those deaths? From metastatic disease--like mine. And the numbers haven't changed much in the last 30 years, despite more hype, more awareness, more pink.

I guess I am writing a post about why Metastatic Breast Cancer Awareness Day is so important. But as my friend Nancy puts it--really, just one day?

And I've griped about the pinkification of October before, but in case you need more reasons to be grumpy on a Monday, here are some interesting articles I've come across recently.

- Why I almost can't turn on the t.v. on Sundays anymore.

- Apparently this also happened yesterday?
- This blogger's reaction pretty much sums it up perfectly.

- And if you think bras are uncomfortable, try blind consumerism.

- Finally, a controversial argument by one of breast cancer's most ardent researchers and fighters that all cancer is metastatic.

If I can please implore you, if you're going to give, please donate to breast cancer charities that fund research, not awareness. We are literally dying for it.

Want a few suggestions? My friend Carolyn put together a list, below, and of course I also support the efforts of the Avon Foundation because they put real dollars toward research and have never shied away from the realities of this disease.

Here are some organizations where you may consider donating a few dollars; all receive "A" ratings for using most of their profits towards funding research and support rather than fundraising.... Breast Cancer Research Foundation, National Breast Cancer Coalition Fund, Living Beyond Breast Cancer, Young Survival Coalition, or Breast Cancer.org.

One final, less grouchy, note: if you're going to be aware, be aware of your own body. Any changes that don't seem right to you? Get them checked out, and press your doctors to take you seriously. Breast cancer in younger women tends to be far more aggressive than the disease that strikes women who are post-menopausal.

My primary tumor was literally the size of a walnut under my skin, and my doctors were still insisting it was mastitis. So I switched doctors. And then a week later, my new doctor was calling to tell me it had already spread to my lungs, my lymph nodes, and my spleen.

Thursday, October 10, 2013

My Defiant Monkey

Today was a day that included Quinn wiping his snot on the arm of our couch as if it were a Kleenex. That alone should sum up our day for you.

But Quinn also decided he was done with diapers around 12:30 this afternoon. I was cleaning up after lunch when I heard the toilet flush, and my first thought was Uh-oh. What just went down the toilet? I turned off the kitchen faucet and ran back to the bathroom to ask Quinn what he was doing. I found him naked in the hallway, where he said, "I go pee-pee on the toilet, Mommy."

And then, like the sucker that I am, I felt guilty for having expected the worst. So I gave him all sorts of praise, told him how proud I was of him, told him if he did it again he'd get some gummy bears, and asked him if he was done with diapers. "Yep, I am," he promised.

Let me just say two-year-olds are big fat fibbers. They can't help themselves. But I am eager for him to be potty-trained, so I fell for it hook, line, and sinker. I let him wear the big-boy underwear.

About half an hour later, we were playing with trains in his playroom when I smelled an awful stench and saw the poop through the gap between his underwear and his thigh. That right there could also sum up our day for you. When I told him not to sit in it, that we needed to go clean it up, he got into a squatting position and said (I kid you not), "That better?"

It was also a day in which I yelled at Quinn way more than I'd like--for purposefully splashing the cat's water all over the floor, for running out the front door when I'd asked him to wait one minute for me, for refusing to get in his carseat, and on and on. There were multiple time-outs for him yelling "No, Mama!", multiple times when I broke down crying from exhaustion and feeling guilty and terrible at this parenting thing, multiple made-up almost swear words. I might have said, "Get in the f----un car!" at one point. Fun car, indeed.

On a whim this afternoon, I reached out via Facebook, saying I was going to start a support group for moms with cancer. I was partly joking, partly desperately hoping someone would respond and say: Hey, you're not alone; this is hard; I'm exhausted over here, too. I didn't expect the overwhelming response I got, though--from the cancer community and beyond--receptive and supportive and offering advice on how to get something like this going.

So, I'm going to try just that, to get something like this going. This, from a girl who doesn't even much care for support groups. But I'm tired. For a long time, I've fallen back on the idea that all moms are tired, but chemo fatigue has got to be different or else I am just a complete wimp. And Quinn knows how to push my buttons--actively seeks them out, even. It hasn't been a good combination for us lately, my fatigue and his button-pushing defiance.

I'm hoping this little idea I posed today can turn into something that gives me a few useful tools for better, more creative parenting. Because I love this defiant little monkey so much and have no idea how long I'll be around to parent him. I want our days to be better than this, know they can be better than today was. Here's to tomorrow, right?

Monday, October 7, 2013

What Brings You Here

Every once in awhile, I look at the analytics on this blog to see what's bringing people here.

After my latest glance at the search terms, I just feel sorry for some of those people, who were innocently looking for a porn pick-me-up and stumbled across a blog about cancer instead. Oops.

Whoever was looking for "best boobies" and ended up on my site: I'm truly sorry to disappoint; we got rid of those around mid-January, 2012. The new ones are okay, but I wouldn't call them the best. For one, they don't have much feeling left after all the nerves were cut for my double mastectomy. For two, here's a weird fact about implants: they're cool to the touch. Always. You'll have to find your own to test that--these ones are taken and it would just be weird to invite a whole bunch of my readers to feel my boobies. Also? The nipples on mine are missing (although maybe that's somebody's fetish?)

On the other hand, these new ones hold their own without a bra and they don't have cancer, so that's a huge plus. On second thought, maybe boobs that aren't trying to kill me are the best. So maybe you ended up exactly where you wanted. In that case, you're welcome.

To the person looking for a "booby of the day," you, too, were probably in for a surprise. While I might someday, I haven't yet posted any photos of my boobs online--before or after my surgeries. Cancer plus having a baby has pretty much removed any hang-ups I ever had about disrobing in front of strangers, but I still have my boundaries. So far, the Internet is one. Anyway, if you're looking for those photos, you might want to try here.

Another great post for what cancer looks like? This one. Although cancer also looks like this, so you just never know.

Oh, and now that you're here, I hope you'll stick around awhile.

Sunday, October 6, 2013

A New Look

So, you may have noticed a few little changes around here the past few days. I hope you like the new look and find it easy to navigate. Those were my goals.

Also, to look a little more grown up around here. It was time. It appears they have not found a cure for cancer yet, so I'll be writing here for awhile.

I couldn't have done it without Stelina over at Lorelai's Things, who was lovely to work with and saved me from having to teach myself html and css.

I'd love to hear what you think!

Wednesday, October 2, 2013

Why We Walk

Over the weekend I flew to San Francisco to walk in my second annual Avon Walk for Breast Cancer. Nine of us met up in the pre-dawn chilliness two days in a row to complete 39.3 miles in order to raise money for research into this deadly disease. 

It was frigid at 6 a.m., but at least I wasn't bald this year. 
{early morning festivities}
During the opening ceremony, a kid who must've been about 12 spoke about losing his mom after her several-year battle with breast cancer, and I broke down sobbing. I turned to my friend Shelby for a hug and made a joke about the crying starting already. I couldn't help myself.

It was also an especially emotional walk for me because I learned at lunch on Saturday that my fellow fighter Jen passed away Friday night, leaving her six-year-old son behind. I thought of her (and him) so often as I walked. On the eve of "Pinktober," all I could think was: this disease needs to end.
{Chinatown}
My teammates and I walked up steep San Francisco hills, along the waterfront looking out toward Alcatraz, over the Golden Gate Bridge, through Marin County north of the city, and then we got up in the morning and did it all again. My friend from Seattle joked that if she'd known we were walking that far north, she would have just started walking down from Washington to meet us. 
{the Golden Gate Bridge on Saturday}
By the end of the first day, our feet hurt, our hips were cramping, and some of us were chafed in pretty unpleasant spots. So we soaked our feet in epsom salt baths, downed a couple of anti-inflammatories with our carb-filled dinner, and got up to do it all over again on Sunday. We walked because we could, and there are so many who no longer can.
AvonWalk SF2013-83
{some of my teammates + me after Day 1 of walking}
Many walkers wore "race" bibs that said: I'm in it to end it for... or I'm walking for... and they wrote whoever they were walking for in the blank. I'd written mine out on Friday night, before hearing of Jen's passing. Mine said, "Myself, and all my Stage 4 sisters," along with several women's names, including Jen's. 

Another woman wrote, simply, "Humanity." (And then I felt like a schmuck for saying I was walking for myself.) 

And one man's bib said, "I'm walking for time, valuable time," and I thought That's exactly why we're walking.

Join us again next year?

Thursday, September 26, 2013

The Kindness of You

You people are incredible, you know that, right? Look what you did--almost $12,000!



I am going to walk my ass off this weekend (and possibly my toenails, too). And I am so grateful to be able to do it. I know how lucky I am. We'll see if I'm still saying that at mile 24.

However many blisters I accumulate or Advil I need to take, thank you all for supporting me--financially, emotionally, and otherwise.

I think you all know, especially if you've been reading here awhile, or--you know, just have common sense--that cancer has brought a lot of dread and pain and exhaustion to my life. And I think I've said it before, but it bears repeating. If cancer were a "gift," I'd give it right back. I'd say: No thank you, I've got plenty of stress already, do you have a J.Crew gift card instead? 

People ask me all the time how I stay positive in the face of this shitstorm.

Quinn, for one. While he can be an obstinate terror from time to time (like most 2-year-olds), he will then say to me just as I'm turning out his light at the end of the day, "Mom, I want to see your face. I need you," and my heart melts.

Chris, for another. I could probably write a book of Chris-isms and pass it off as inspirational daily quotes, if you like the no-b.s. approach. For example, the other night I started to get anxious about cancer, and Chris quipped: "Why don't you save your worry for a time when you're not able to walk 39.3 miles in a weekend?" Man makes a fair point.

But there is also all of you--my friends, family, distant supporters, former colleagues and classmates--who've commented here just when I need a pick-me-up, who've donated to my walk efforts even though I haven't seen you since at least law school graduation, who've sent me products that were the secret to my radiant skin during chemo, who anonymously sent me a $500 gift certificate to my hair salon just in time for me to need a haircut (or ten), who've shown up to help take care of me and my family when we needed it most, who remind me every day that I'm not in this alone. I am so blessed to have you in my life.

Yes, cancer has brought me more scars and anxiety and anger than I know what to do with, but it has also brought me closer to you guys, has shown me the meaning of kindness, has revived my faith in humanity. So even though I would give cancer right back if I could, it hasn't all been bad. Thank you for that.

Monday, September 23, 2013

Beyond His Years

I took Quinn to get his hair cut last week.

{my baby}
We used to go to one of those kids' places--with a train table set-up and a seat shaped like a car and capes made to look like superhero outfits--and Quinn hated it. He would scream through the entire session, just throw a flat-out fit, and he always ended up with uneven haircuts I regretted paying for.

A few months ago, we tried taking him to Chris' stylist, Lena, and Quinn fell in love--with her or the experience, I'm not sure. She's calm and pretty, and a young mom herself. Quinn gets to ride up and down in the chair. She indulges his commands, and I think he feels like he's in control--minus the sensory overload that the other place offered. Also, he gets a lollipop at the end, so what's not to love?

Anyway, last week was the first time we'd gone without Chris. It just happened to work out that way with our schedules.

Quinn still sits on my lap during his haircuts, and so I got to chatting with Lena the way I would with any hairdresser. As we were making small talk, she asked about my work schedule, whether I was working from home part-time now--since it was midday on Friday--and it caught me off guard.

Most people know I'm not working, and I figured Chris had probably told her everything about my condition. Because I tell my hairdresser everything, don't you? I figured wrong. Chris hadn't said a word.

I started to tell her I was at home full-time with Quinn these days, and why.

"Oh, I had no idea," she said. And she asked the normal follow-up questions: When were you diagnosed? Did you catch it early? How are you doing now? 


I went through my spiel. I'm happy to share my story, and I don't usually think twice about it. I answered matter-of-factly: He was five months old. It was Stage 4 from the beginning. I'm responding really well to treatment. I'm tired a lot of the time, but aren't all moms?


As I started to talk, though, Quinn tensed up--noticeably. He clung to me, wrapped his legs around me, and buried his head in my neck. He was clearly uncomfortable. Lena noticed it, and we exchanged looks in the mirror. My voice trailed off, and then I spoke to Quinn.

"Mommy's okay, honey. I'm right here. I'm fine."

I have to start choosing my words more carefully around my little man, it seems. He's growing up much faster than I expected.

{my little man}

Monday, September 16, 2013

Thirty-Five

Friday was my thirty-fifth birthday, which means I'm now at an age I distinctly remember my mom being. She had this great stonewashed denim maxi skirt that I thought was the coolest piece of fashion I'd ever seen. Let's hear it for the 80s, right? I must've been six, and thirty-five seemed so old and wise and elegant. I wanted to be those things, too.

So even though I'm 35, Quinn insisted on saying I'm now three while he held up the requisite number of fingers (because that's how old he'll be at his next birthday--gotta love the logic of a two-year-old). I woke up early on Friday to go hiking.

When I got home, Quinn came running through the kitchen repeating, "Happy birthday, Mama!" so of course I started crying. God, I love that kid.

Then Chris orchestrated a birthday party for me at our house on Saturday--from clean-up to food-prep-- which means I essentially spent the weekend eating cake surrounded by people I love.

Getting older is pretty wonderful, you know that? (Mustaches and all...)

***

In a little less than two weeks, I'll be heading up to San Francisco to walk 39.3 miles alongside some more people I love to help raise money for breast cancer research and support services for women who aren't as fortunate as I am.

I'm battling one heck of an ingrown toenail right now (which is so gross, I know; I'm sorry), so we'll see how that holds up on the hills of San Francisco. I've promised my nurses I'll listen to my body and won't overdue it. I am, after all, old now (at least according to what I thought when I was six.) As one nurse said to me the other day, "This walk is to support people like you, not to be done by people like you."

Hey, at least this year I won't be bald.

***

Here's to lots more birthdays, hiking well into middle-age, Quinn getting to make fun of my fashion choices thirty-some years from now, cake, and wishes coming true.

Monday, September 9, 2013

Out of the Mouths of Babes

Over the weekend, Chris, Quinn and I went up to Spokane, in eastern Washington, in honor of my grandfather's 80th birthday and my grandmother's 76th. Even though they haven't been married for probably forty years now (or maybe because they haven't been married for forty years), they were able to come together with their children, grandchildren, and great-grandchildren to blow out candles with each other and celebrate with the family they began more than a half-century ago.

{my grandmother and me sharing a moment on a swing}

I wasn't sure what to expect for the weekend, honestly. I haven't seen some of my aunts and uncles since my high-school graduation almost two decades ago, and even though I was in Spokane in 2010 for my maternal grandmother's funeral, Chris hadn't been able to join me then and had never visited. It wasn't exactly at the top of our destination list. Not to knock the city where I was born, but it has always looked to me like a town in need of a fresh coat of paint.

We stayed at my Aunt Kathy's house, which used to belong to my great-grandfather, although you can hardly see the outline of the old house after a year of remodeling and renovation, both inside and out (no fresh paint needed here). This house is next door to where my dad grew up and my grandmother still lives today. Together, the houses sit on six acres in a suburb called Otis Orchards, not far from the Spokane River and the Idaho border. It is rural, and was probably an idyllic place to grow up when my dad was a kid. Now, my Aunt complains of "tweakers" stealing parts out of her barn to sell or trade for meth, so they've had to put up an extensive security camera system. The economic downturn hit Spokane's manufacturing economy hard; trailer parks and junk yards have taken the place of wide open fields and horse farms. As my dad will tell you if you visit with him, "It didn't used to be like this."

***

I met two of my first cousins for the first time on this trip. It's a long story that's not really mine to tell, but there are a couple of special kids growing up there without a mom, which I know isn't all that unusual in the world, but it is unusual in my family. The mother in me wanted to shower them with as much attention as possible while I was there. It was only a weekend, but I bonded with Lacy, a precocious six-year-old, pretty quickly.

While I was reading books to the kids, she saw my license sitting out on the dresser and asked bluntly if that was me. I said yes.

[my license photo, probably taken summer of 2008}

"Why'd you cut your hair?" she wanted to know.

How would I explain this? I wondered.

"I had to take some medicine that made my hair fall out, and it's just growing back in," I tried. I told her it wasn't like any medicine she was ever likely to need, because I didn't want her to be scared the next time she had to take Tylenol or antibiotics.

I've been wondering lately how I will explain cancer to Quinn when the time comes. He's getting older, and already knows how often I have to go to the doctor. I'm going to have to explain this to him someday soon. I think honesty is the best policy, but I also want to keep my discussions with Quinn (or any other kid) age-appropriate. How much should I tell her? I decided against using the cancer word, against going into detail about why I needed medicine or what my future might look like.

"Oh," Lacy seemed satisfied with my simple explanation so I left it at that.

And then she added, "Your face used to look better, too. I think you're growing a mustache." She looked closer. "Yep, definitely a mustache."

Apparently, the last few years have aged me a little (but at least I have enough hair again to worry about waxing my upper lip). Go figure. Let's see what my face looks like when I turn 80.

{four generations, ages 79.9, 34.9, 60, and 2.5}

Wednesday, September 4, 2013

This Time of Year

In my Facebook feed over the last couple of weeks, just about every parent I know has posted pictures of their kids heading back to school. You guys have some cute kiddos, you know that? And I can't help but hope I'll be around long enough to see Quinn off to second, third, fourth grade, to his first day of high school, to his high school graduation.

This time of year used to be my favorite. Back to school signaled new beginnings, and the crispness in the air was a sign that the holidays were just around the corner. But there is no crispness in the air here; in fact, it was a whopping 110 degrees out today, so maybe that's why this time of year seems harder for me lately.

Or maybe it's the impending autumnal equinox. Although I really think it's the damn heat. I walked into Safeway the other day, saw Halloween decorations and endless buckets of candy, and had to stop to think about what month it was. I had to remind myself that it's okay--Halloween is next month, after all. They're not jumping the gun (unlike the Christmas displays going on in Costco that started last month; that's just ridiculous). To Safeway's credit, it's not still mid-summer, even though it feels like it is.

And although we'll be a month behind schedule, next month we're switching Quinn out of daycare and into a preschool a bit closer to our house. This new school follows the Reggio Emilia approach, which as far as I can tell just means they emphasize play as a way to learn. The children assist in growing their own garden and raising chickens (once the weather cools down). And starting at age three, the school offers Spanish enrichment as part of its curriculum.

We have the option of either five hours a day or nine, three days a week, and at Chris' urging, we chose the longer days. Because I am exhausted--from chemo, from this heat, from parenting an active toddler who no longer naps--and embarrassed to admit that being a stay-at-home-mom is so much harder than I anticipated it would be.
When you have a baby, everyone advises you to treasure every moment. That is a big task, and it's hard to enjoy every single second when you are exhausted, when you've been up all night with an inconsolable baby, when your heart aches because you've got incurable cancer. On the other hand, I know intimately well that my time with Quinn is limited and I want to make the most of it.

I hope I'm making the right decision--one that will give me more time to rest so that I'm able to keep up with Quinn a little better, one that will give him room to learn in ways I'm not capable of creating (because I've forgotten most of my Spanish and am not willing to raise chickens, you see). Mostly, I hope Quinn will be happy.

Wednesday, August 28, 2013

Choosing What's Helpful

Do you all remember how I had to take a break from working out because of my broken arm back in January? And then how it healed just in time for me to have my expanders swapped out for implants in March? And who could forget my surgery incision opening up just four weeks after that??

I finally got clearance to return to exercise near the end of June, which means I spent HALF of 2013 recovering from one injury or another.

It was one long string of sitting on my ass, is what it was.

I know how lucky I am that I even have the desire to exercise, let alone the ability. After what I went through the first half of this year, I don't take that for granted. I have metastatic breast cancer; there are a lot of people who get so sidelined by this disease and the drugs required to keep it at bay--through no fault of their own--that exercise is the last thing on their minds. I am lucky that my metastases are small and confined to my lymphatic system. I am lucky that all of my side effects have been related to chemo, not cancer itself. I am lucky that, for now, the chemo I'm on has relatively few physical side effects.

It's amazing what you find to be thrilled about when you have cancer.

Since the end of June, I've been trying to get back in shape, walking here and there (although not as much as I should, since I signed up for this Avon Walk and 39.3 miles is no joke, but neither is summer in Phoenix, so I'm picking my battles) and going to yoga a couple times a week. I'm getting stronger, but my body is different than it was pre-cancer.

That might be the understatement of this entire blog.

This is a work-in-progress. My goal is not just to get in shape for the sake of my cardiovascular and mental health, not just to strengthen my muscles and increase my stamina, but also to stretch out scar tissue, figure out how to re-train chest muscles that have been pulled and shaped in ways they were never naturally meant to go, and prove to myself that my body is still capable--capable of hiking a mountain at 6 a.m., of keeping up with a toddler, of finding stillness and peace while completing a series of sometimes uncomfortable poses in a heated room, of walking a marathon and a half over two days to raise money so that maybe, someday we can end this terrible disease that accounts for nearly twenty-five percent of cancers in women.

I'm planning on walking a half-marathon this weekend with my good friend (and fellow Avon walker) Ginelle. Last weekend, I went on a two-hour hike with a couple of other friends who are also walking with me in San Francisco next month. Today, I'm going to try to hold a handstand in yoga for more than a half second.

My disability claim was probably just revoked, but I promise doing handstands has nothing to do with my abilities as a lawyer.

I don't exercise every day. Some days I'm too exhausted or my head hurts too terribly. But on a daily basis, I'm trying to prove to myself that I am capable of living with cancer. Exercise helps me with that. Sitting on my ass for extended periods does not.

Tell me, what does exercise help you accomplish?

Thursday, August 22, 2013

Stable

I've been a little off lately, I know. I've had this anniversary and yesterday's scans on my mind, not to mention a possible new preschool for Quinn and managing disability insurance and student loans and the fact that my brother who we just visited in Alaska is leaving for Afghanistan in the spring, so it'll be awhile before I see him again.

And then Tuesday, as I was waiting in the dark, curtained-off alcove for my PET scan... Side note: have I explained how these things work? First, you have to fast for four hours, and my blood sugar always dips into the "Are you sure you're feeling okay, honey?" territory. Last time, the tech asked me if I was diabetic. I'm not. I had chemo on Monday, so I'm already prone to headaches and nausea. Not eating doesn't help. Ask any pregnant lady.

After I check in, the nurses show me to a recliner set into an alcove in the hallway. Once I'm comfortable, they access my port, the large, wart-looking thing right above my left boob. By "access," I mean they stick a needle into it to draw blood and inject me with a radioactive glucose. My fasting-starved cells eat the sugar up, and any cancer cells will eat it up faster than normal cells, thereby giving the radiologists a picture of what's going on inside me, cancer-wise.

It takes about forty-five minutes for the isotope to travel through my bloodstream, which is time I spend reclining in the dark alcove. Theoretically, it could be naptime, but I'm too anxious to nap. Every twenty minutes or so I can hear them opening the curtain for another nearby patient signaling it's time for him or her to get scanned. I want to vomit, but there's nothing in my stomach.

It seemed to be taking an especially long time for the technician to come get me. I was getting anxious. Even more anxious than usual. Finally, she came over. "Down the hall. Go ahead and empty your bladder," she told me.

I went to the bathroom, and then came back to my empty seat and waited. And waited. An electrician carted his cart by. The receptionist shuffled past to go back to her station. Machines whirled behind closed doors. I waited some more.

After what seemed like an eternity, the technician came back to me and explained, "I'm sorry, it's going to be another six minutes or so. I saw something on this woman's scan, and I need to make sure I rescan it to get good images." I felt bile rising in the back of my throat. I was next, and here the technician was telling me there was a tumor in the woman right before me. I'm pretty sure that violated all kinds of HIPAA regulations, but it also broke my heart for her and scared the hell out of me at the same time.

Six minutes must have passed. An aide wheeled the woman with the tumor past me, down the hallway. She had oxygen tubes coming out of her nostrils, helping her breathe. She was completely bald. I started crying.

During my scan, I tried to imagine clean cells. I told myself I'm healthy. I thought of my childhood, of lying on the beach in Hawaii when I was five and loving the feeling of the warmth of the sun. I thought of Quinn.

Toward the end of my twenty minutes on the machine, I could see the technician leave the room out of the corner of my eye. Immediately I started panicking. Was she was off to tell the next person in line that she'd seen something on my scan and would be a few more minutes? Tears were streaming into my ears.

And then, before I knew it, she was back, lowering the table, telling me my scan was over, sending me on my way.

I met with my oncologist yesterday to get my results, and--although my scan wasn't squeaky clean--he was pleased. The drugs are working. And for another couple of months, I no longer feel like I'm going to throw up.




Monday, August 19, 2013

Cancerversary

Two years ago I was told those dreadful words: you have cancer. Our lives changed pretty dramatically on that day and over the next couple of weeks as we learned the extent of what we were facing. To say it has been a roller coaster couple of years is putting it lightly. It's like we've been on a rickety wooden roller coaster without any safety constraints. But we're still holding on. And occasionally it's even fun (as roller coasters and life tend to be).

In the past two years, I've been bald twice, endured four surgeries and countless gallons of medicine pumped into my bloodstream. I've lost my fertility and my eyebrows. And my breasts. I've raised nearly $20,000 for the Avon Foundation for Women to fight breast cancer and I've met some pretty incredible people who probably wouldn't be in my life but for cancer. So it hasn't been all terrible. 

That doesn't mean I don't still cry when I hear about a friend's colleague who was just diagnosed with leukemia and has to spend five weeks at a time hospitalized and away from her young children. Or when a woman one friend described as our "cancer-land ambassador" entered hospice last week. I cry more now than I ever did pre-cancer. 

I've learned a little about empathy over the past twenty-four months. I've also learned that it's okay to experience all these emotions, so long as I can find my way out of them pretty quickly. So long as I don't linger in the fear, the grief, the sadness.

I've also learned that living with incurable cancer means we've never quite arrived at the “new normal” that people talk about post-treatment. I still have scans every three months (in fact, I have a PET scan and a brain MRI tomorrow. Fingers crossed, please.) I still come in for treatment every three weeks. I still think about cancer more days than not. 

On the other hand, life goes on, and it's better if you join in on it rather than swim around in your own head full of anxieties and dread. Those can get to be awfully dark waters--at least in my head--and it can feel like you're drowning in them. 

My boys are my lifesavers. They pull me out of those dark places every time. When I whine to Chris that I'll never get to wake up again without cancer in my life, he says: "But you get to wake up again." 

Speaking of life going on, of getting out of my head, of going to a place that just about never gets dark, at least not this time of year, we just spent a week visiting my brother and his family in Fairbanks, Alaska. 

We took the train into Denali, which just about blew Quinn's mind. 
We spent a significant amount of time outside, which always makes me feel more alive. 
Quinn approved of the cabins.
That's my brother and nephew, on the left. My boys on the right. Good looking crew, no?
And this is the view out my brother's window at 11:45 p.m. Yep, almost midnight and the sun was just setting. 
On the way home from Alaska, we stopped in northern California to check in on my mother-in-law. At her house yesterday, I stumbled across an AARP magazine and an article about a woman who was diagnosed with Stage IV gallbladder cancer and given three months to live. That was more than five years ago. She is thriving today. Doctors can't quite explain it. The woman said she lives by a line in Lance Armstrong's book It's Not About the Bike that goes something like: "If you can move, you're not sick." 

Physically, most days, I don't feel sick. Two years in, and we're still moving. Here's to many, many more cancerversaries.