Friday, May 24, 2013


"We'll get you back down to remission. I promise," my oncologist told me last week. I'd had to leave the exam room, I was so devastated by the news that cancer was rearing its ugly head again. After I composed myself, when I came back in, his words encouraged me. They planted that seed of hope I needed on an otherwise pretty uncertain day.

As I write this blog, and maybe more importantly my book, I often wonder how I'll wrap it up, what the ending will be. I'd really been hoping I could end it on my clean scan last week (followed by another and then another). But I guess my ending's a little further off, and you'll have to bear with me from week to week just a little bit longer, until that series of clean scans does come along. Thanks for sticking around with me for this roller coaster ride.

Over the last week, a number of people have asked me a version of this question: I thought your scan in January was clean--how is the cancer back again? The best I can explain it is that as sensitive as these scans are, they cannot see every cell. A couple of cells went under the radar. It's not until they regroup, divide, grow to a certain size, that they can be seen by current technology. And unfortunately, it's not uncommon for breast cancer to lay dormant for years before cropping up again. In my case, it just happens to be months rather than years.

The aggressiveness of my cancer is a double-edged sword. On the one hand, it is--as one doctor put it--like cancer on crack. I will have to monitor it closely for the rest of my life. But this isn't new news, and I've (mostly) adjusted to what it means to live with a chronic illness. On the other hand, the cracked-out nature of this cancer means it responds very well to chemo, eats it up like Pac-Man chasing after those little pellets. It's what has allowed me to get down to No Evidence of Disease twice already.

Today, I started on the miracle drug that will get me back to NED. Because it's a new drug for me, it was administered slowly, over ninety minutes, followed by ninety minutes of monitoring to see if I would have any adverse reactions. I didn't, unless you count the fact that it's 12:48 a.m. and I still cannot sleep because of the damn steroids. Any side effects will likely strike this weekend.

Toward the end of my treatment today, a young couple walked in with their 3-month-old son. The dad had been diagnosed with Stage 4 lymphoma three weeks before their son was born. I remember seeing them in January, when I was finishing up my last treatment and he was just starting his. She was nine months pregnant then, and he and I had exchanged half-smiles and a knowing nod--like, 'weird being the youngest ones here, isn't it?'

Today they came into the infusion room, proud to show off their son. All the nurses were oohing and aahing, and my eyes filled up with tears. I couldn't help it. It brought back a flood of memories to when Quinn was that size, and I was starting down this crazy cancer road myself.

The dad brought his son straight over and handed him to me, as if he could tell I needed it. Who doesn't need fat baby thighs and a little spit up on occasion? Instant mood-booster, trust me. We all chatted for awhile, and he said his latest scans are very promising. His words encouraged me. They planted that seed of hope I needed on an otherwise pretty uncertain day.

Saturday, May 18, 2013

Third Time's a Charm

It figures I would get a cancer that's (almost) as stubborn as I am.

We met with my oncologist to review the results of Thursday's scan, and it wasn't as squeaky clean as we had hoped for. A couple of spots lit up again -- some minor, but notable increases in activity in my spleen and chest wall, likely a couple of lymph nodes. These areas have been trouble spots since I was first diagnosed, almost two years ago now.

On the plus side, the activity levels were much lower than when I had my recurrence last summer, so at least this fucker is getting successively less troublesome. And while the radiologist suggested we wait another three months to see how things compare, with my history, my oncologist wants to start me on a new treatment course right away (or, as soon as insurance approves it). 

I'll likely start next week. I'll be the first patient at my oncology center to be treated with a new, targeted chemo called TDM1/Kadcyla that was approved by the FDA earlier this spring. Because this is a targeted chemo, the side effects are supposed to be minimal. I may even get to keep my hair. And because it's well-tolerated, it's likely something I'll be on long-term.

When we received the news in January that my scan was clean and I could take a break from chemo, Chris and I celebrated with a champagne toast at a little outdoor cafe. Today, we ran a quick errand and had a late lunch sitting in his car in the parking lot at In-N-Out, trying not to drip our animal-style cheeseburgers all over our laps. He made a joke about how far our standards had dropped. 

As I write this, my two boys are snoozing in bed next to me. There is no better feeling in the world than being part of this family. And I tried to put Quinn down in his own room tonight, but it took a couple of hours (yes, really), and then he ended up dragging his brown blanket down the hallway to our room just after midnight anyway. As I sat next to his bed, rubbing his back and waiting for him to fall asleep, I sobbed as quietly as I could. My drawn-on eyelashes didn't stand a chance today.

I'm still trying to process all of the emotions I've felt in the last twelve hours, and I am exhausted. But you can be sure this bedraggled little army of mine and I are in this for the long haul. I am determined to beat this shit into remission again. Because Chris deserves a reason to toast champagne again, and Quinn -- well, someday I'd like to toast champagne with him, too.  

Plus, the third time's a charm, right?

Wednesday, May 15, 2013

Day 121

This is my hair growth 121 days post-chemo. Compare to days 59 and 93 if you'd like. A little progress, no?

Speaking of hair, Quinn likes it when I run my hands through his. He'll sit down in my lap and say, "Mama, pay me hair." Mama, play with my hair. So I do. How could I not?

Sometimes, lately, he wants to return the favor. He plays with my hair, and we talk about the texture. "Is Mama's hair fuzzy?" I ask. "Si." He says. (He speaks one word of Spanish -- daycare's contribution to his bilingual education). 

The other day, I asked him -- tentatively, because I worry about creating unnecessary anxiety in him -- "Are you happy Mama has hair again?" 

"Si," he said. "All better now."

I sure hope so. I have my first post-chemo scan tomorrow. Fingers crossed.

Sunday, May 12, 2013


I have a bone to pick.

More and more often, I come across blogs, or Twitter posts, or Facebook status updates from or about women with Stage 4 breast cancer referring to it as terminal. And of course it is for some, but to me, terminal implies imminent death, not just incurable disease. For example, Parkinson's and diabetes are also incurable, and the people I know with those diseases don't characterize themselves as terminally ill.

My perspective on this has led me into some interesting discussions lately.

And it may be just semantics, but I think words matter. I have read the articles about how mindful we must be with our language describing how we approach this disease. Are we warriors in battle? If someone loses their fight, does that imply they somehow weren't strong enough? Language is powerful. And we should choose our words carefully so that we honor all of us who are afflicted with this damn disease, however each of us chooses to go up against it.

In my mind, we have to be just as careful about how we categorize ourselves, even when handed a devastating diagnosis. Yes, being Stage 4 is scary: The doctors visits never end, the world of treatments and scans and having an ugly port in your chest are ever present, and there is always the fear of What if treatment stops working? lurking closer to the surface of your brain than you'd like.

And while the statistics are somewhat shitty for those of us with advanced breast cancer, the latest statistics are at least three years old. This means they don't tell the story of medicines that have been approved in the last couple of years, so they cannot incorporate current medical protocol. They don't tell the story of any one individual, because statistics cannot do that, either. What statistics do is group together everyone who's diagnosed with Stage 4 breast cancer, whether they are 26 or 62 at initial diagnosis, whether they are obese or fit, whether their breast cancer is inflammatory or HER-2 positive or triple negative, whether their scans show a few hotspots in their lymphatic system or significant organ involvement.

I'm not trying to trivialize my illness here. I realize (God, do I realize) that too many people still die of breast cancer--about 40,000 will this year in the U.S. alone. Forty thousand. For every single one of them, this disease is terminal.

However, for many of us--for more and more of us as advances in science are made--a Stage 4 diagnosis does not equal an automatic death sentence. As my doctors--some of the best in the country in this field--have said, in many cases advanced breast cancer can be a chronic condition, maybe not curable, but treatable and manageable long-term. This idea, that what I have is a chronic rather than terminal disease, gives me comfort.

Perhaps I'm being naive or ignoring the 900-pound gorilla in the room here, but there is not a day that goes by that I don't think about cancer, so I don't think I'm taking an all rainbows and unicorns approach here.

I have another scan this week. I am all-too-aware of the implications of my diagnosis. I start to imagine the what-ifs, and my heart hurts. In line at the post office the other day, a mom and her two teenagers were flipping through their passport photos, joking about what terrible pictures they'd all taken, ribbing each other for having lopsided smiles or looking tired. And I started crying, right there in the damn post office line, because I had a fleeting thought wondering whether I'd get to plan trips that require a passport with my teenager someday.

Which is why I think it's even more important to inject some hope into the terminology we use to describe this godawful disease.

Under the Americans with Disabilities Act, to qualify for protections under the law, to be considered disabled for legal purposes due to cancer, you have to show that the disease has interfered with a major life function. Menopause--even chemically-induced, twenty-years-earlier-than-you'd-planned-it menopause--doesn't count. (Clearly, men wrote this law). As it stands today, I'm not sure I could qualify for a handicapped sticker on my car. To me, then, it seems--at best--disingenuous to call my disease terminal. At worst, I think I'd be tempting fate.

Call this disease many things. Call it the devil and a thief. Get out your best potty mouth and call it all sorts of ugly names you'd be embarrassed to say around your grandmother. But unless your doctor has given you a time stamp (and even then, still consider being careful with your words), please don't call this disease terminal. Not for this Stage 4 girl.

Tuesday, May 7, 2013

The Unflappable Ones

Monday was National Nurse's Day -- did you know that? If I could give all the nurses in my life a hug and a 25% raise and maybe a gift certificate for a massage, too, I would do all that and still feel thoroughly indebted to them and unable to express my complete gratitude. Seriously, these women (and men, mine just happen to all be women) are spectacular people.

My nurses gave me my "chemo education" at the start of all this, guided me through what to expect and how to manage side effects, threw confetti when I finished my first round of chemo, called with the spectacular news that my scan was clean that December, and cried with me when I came back to start my second round of chemo just seven months later. They do all this for every patient.

And how many others out their could be on their feet 90% of the day and still smile through it? (Hint: these people are also underpaid.)

At this point, my nurses and I joke that my infusion time is my time to unwind. I get to kick my feet up in the recliner and catch up with these women who are now my friends. We talk about our toddlers' sleep habits and our parents' illnesses. We only get a few minutes while they're setting up my IV bags or drawing blood from my port to test my cell counts, and then again when my medicine bags are empty and ready for swapping out. But those minutes have added up over the last twenty months, and I start to miss these women and our interactions toward the end of each three-week cycle.

If I ever get to stop having these infusions, I'm going to have to start inviting their kids over for playdates, just to be able to visit with these women who've become so important to me.

Last week, my port wasn't cooperating and my nurse was having trouble getting any blood out, so we had a few extra minutes to chat. Meantime, she's flushing my port, attempting to draw blood, unwrapping another vial of saline to flush my port again, asking me to hold my breath in hopes that the blood will start flowing, and joking about needing to Drano it. She's also telling me about a recent trip to visit her new nephew and how her three-year-old son did with his cousins. And I'm just sitting there in amazement that none of what's going on with my port is seeming to derail her a bit.

"This port is making me sweat, here," she laughed, just as I was thinking she was completely unflappable. For the record, I didn't see any sweat.

Eventually, my port cooperated, she got the blood she needed, and I got my medicine. Then she quickly moved on to an older man who was complaining of extreme nausea, and then to a woman just a few years older than me who was asking for tips managing side effects.

I try not to eavesdrop too much. While we're all there for the same basic reason, all of our issues and experiences and needs are widely varied. But I hear enough to know these nurses are dealing with a whole slew of crap. And I've been going there long enough to know they do their jobs cheerfully, expertly, and compassionately, no matter how sick the patient, how many complaints we have, how finicky our ports are, or how many times our cancer rears its ugly head. Nurses are a special breed, to be sure, but oncology nurses have to be some of the kindest souls I've ever known.

To all the nurses in my life, thank you for all you do -- for me, and for so many others -- and for coming back to do it again day in and day out. You are some remarkable people, and I hope you know it.