Tuesday, October 30, 2012

Making Strides

I spent all weekend recovering from a 3-mile walk. I napped when Quinn napped, went to bed at 9:15 Saturday night, and developed a spasm in my lower back that lasted for two days. At least I wasn't winded during the walk? It's little consolation for how old I'm apparently getting. Let me explain how a noncompetitive morning stroll turned into a total-body workout.

Quinn and I participated in the American Cancer Society's Making Strides 5K walk in Tempe on Saturday morning. My little - and I use the word "little" only because he's young - snuggle monkey insisted on being carried for the first half of the walk. Every time I tried to put him in his stroller, he'd arch his back like it was filled with snakes, or worse - broccoli. When I tried letting him walk beside me, knowing it would slow my pace but thinking it would at least give my upper body a break, he'd sit down in the middle of the road. Chris and I call this his "riot police" move - his whole body goes limp like he's protesting the 1% and resisting arrest. I'd bend down to pick him up again, apologizing to the walkers who almost tripped over us as we broke their strides. All the carrying, wrestling, and bending to pick up my wiggle monster took its toll.

My chest and shoulder muscles were on fire, but I couldn't resist his cheek on my shoulder, even if we were making awful time, even if I was spoiling him rotten. And then my hat blew off in the wind, but I didn't even mind displaying my bald head to the world. I was hugging my little boy - and we were at a cancer walk, after all.

A few coworkers and friends joined us, including Quinn's best friend from daycare, Sydney. We had to pause often for snack breaks. No joke, I think we walked at about a one mile-per-hour pace. 

Which was good, because the hour leading up to the walk was intense. Chris was out of town, I had to drop my best friend off at the airport for an early-morning flight prior to the walk, and it was also ASU's homecoming on Saturday, so traffic was a nightmare, even at 7 a.m. I was the team leader for my company's team, but showed up fifteen minutes late because I might have bitten off more than I can chew by promising to meet anywhere with a toddler at 7:30 a.m. 

As I was running down Mill Avenue with my bright green stroller and shoeless toddler, trying to catch up with my teammates before the start, a guy in a pink shirt asked me if I was okay. "Just running late," I said. "This'll probably be the most competitive part of my day."

I caught up with my team a couple of blocks up the road; we weren't late for the start, and it probably wouldn't have mattered much anyway, it was such a laid-back event. The guy in the pink shirt came up to me and handed me an extra t-shirt from his team. "Good luck to you," he said, a seriousness in his voice letting me know he wasn't just talking about the walk. This is the shirt he gave me; it was so perfect after the sprint of a morning I'd had...

Monday, October 22, 2012


The period leading up to a PET scan and the time spent waiting for results are often fraught with what people in cancer-land dub "scanxiety." I don't really know how to describe the feeling except to say you try really hard not to get your hopes up, but there they go, imagining your future - one in which you have hair again and that new house you've been shopping for. One in which you've sat at a sidewalk cafe sipping red wine and fattening yourself up on freshly made pasta in Italy itself, maybe as the Mediterranean breeze blows through that new hair of yours. It's a future in which you teach your little boy how to tie his shoes and cheer him on at his first baseball game. Your hopes take on a mind of their own during this period, and you panic at every thought in which the outcome might not be what you want. I can go on and on about how none of us really knows our future and how important it is to live in the present, but when it's time again for my scans every third month, all those platitudes fly straight out the window.

Last week, as I drove to pick Quinn up from daycare the afternoon after my PET scan, I got a call from my oncologist's office confirming my appointment for the following day. No word about scan results, just a matter-of-fact, all-business call to confirm an appointment. Routine, I'm sure. But it set me off--my heart started racing, my palms got all sweaty on the steering wheel, and I convinced myself that it must mean bad news, since last December, when it had been good news, they'd called and told me over the phone. 

I immediately called Chris to see if he could calm me down. "They probably don't even have the results yet," he tried to comfort me. My throat was closing up and I was contemplating how I would pull over on the exit ramp leading from one freeway to another since I was not sure I could safely drive. "Worst case scenario, they've got lots of other drugs they can try," he said. He was right--as usual when it comes to these things--but rational thought isn't at the forefront of my head in the midst of a panic attack. 

So when we hung up, I called my oldest friend, Alana, who was in the middle of her own craze trying to pack for a weekend trip with twenty minutes until she had to leave for her flight. Her frenzy took my mind off my own stress and she even made me laugh a bit. I promised her I'd call as soon as I had any news. 

Less than a minute after our call ended, my phone rang. It was my oncologist, calling to tell me that my PET scan was completely clear. "They don't see anything," he said.

"Totally clear?" I asked. "There's nothing at all?" I checked again. I wanted to make absolutely certain I'd heard him correctly before I told anyone.

I hugged Quinn extra hard at pick-up that day. "We did it again," I whispered in his ear.

I still have another three months of this chemo cocktail, as my oncologist wants to be absolutely certain this time we knock out each and every one of these cells. But assuming another clean scan mid-January, he'll take me off the chemo component and leave me on the other two maintenance drugs. If our luck continues, this will put me into long-term remission. On the other hand, I'll continue to have scans every three months, so if anything does come up, we'll catch it early again and I'm confident I'll continue to respond well to treatment.

Chris and I celebrated our four-year wedding anniversary and my clean scan this weekend. And I feel like I have another lease on life, even if I have to renegotiate this contract every three months. Turns out, I'm a pretty good negotiator.

Monday, October 8, 2012


I had my fourth round of this new chemo a week ago today. After some adjustments to my side-effect medications - a little less steroid here, a little more anti-nausea there, taking Claritin the night before my Neulasta shot to minimize bone pain (which is apparently caused by a histamine reaction) - and I almost felt like a new person this time around. My side effects were very minimal; I just got hit with some bone pain and fatigue today, but I also went to bed late last night after chasing Quinn all around the train park yesterday so that might have contributed.

One of Chris' friends asked him how we were holding up lately, and I think Chris summed it up well: we're probably not any more tired than if we had a second child. I still have the energy to make it to yoga two or three times a week. I cook dinner about twice as often. I'm still working full-time, although it's nothing compared to Chris' full-time. We're both tired, so I'm not really sure I can blame cancer entirely.  

Quinn is nineteen months old now, and has learned how to tell us "no" - always twice, as in "No, no." He continues to be a perpetual motion machine, climbing everything - the back of the couch, the barstools that lead up to the kitchen counter, the higher the better - without fear or hesitation. At the park, only the highest, most-inaccessible-to-moms slides will do. Even better if they're connected by mesh-enclosed footbridges ten feet in the air. It's a good thing that kid's got coordination.

The truth is we're finding our groove in this new reality. Sure, I wish we could go back to the life we had before cancer, but that is not going to happen. We were given a monumental diagnosis that is not leaving our lives anytime soon. We are living with this beast, which doesn't seem like so much of a beast anymore as much as a pest problem. (I should know - I lived in DC for eight years. In one apartment, my cats literally chased the walls because they could hear the rats running around inside them. It's like I was being trained for life wih cancer.)

Soon after my recurrence, other women with Stage IV disease told me they lived their lives normally, pausing for treatment every few weeks and scans every few months. They didn't let cancer rule their lives, and I didn't quite believe them. I was puzzled at their responses to living with chronic illness. One friend said simply, "I've never felt sick." Luckily, neither have I.

Still, I didn't really think it was possible for cancer not to occupy the most space in my brain, but slowly, I've gotten to that point. I'd rather focus on Quinn's antics, meal planning, working on a book proposal, and our travel plans for the holidays. While I miss my hair, this new normal is okay. Today, I feel pretty great, and that's enough.

Thursday, October 4, 2012


I have mixed emotions about October. I used to love the changing of the air to crisp autumn, the crunch of leaves under my feet, the promise of pumpkins and cider and holidays just around the corner. But it was 104 degrees in Phoenix yesterday, with little relief in sight - not exactly comfort-food weather. I ate room-temperature soup for lunch the other day just to try to get myself in the mood; it didn't quite do the trick.

October also now brings with it a mix of trepidation for me and most other breast cancer survivors I know, as the world seems perpetually draped in pink for these thirty-one days. And it's not the color that turns my stomach in knots, or even the message of awareness blaring nonstop across the public airwaves. There may still be some people whose lives will be saved because they were not paying much attention to breast cancer (it wasn't more than a blip on my radar either before my diagnosis) - and this will be the October that woke them up, made them start paying attention to their bodies. 

What irks me and other survivors is the commercialization of a deadly disease. It's the bumper sticker slogans asking us to "Save the Tatas," when this should really be about people's lives. As the month kicks off with football players donning pink ribbons and every other business shelling out pink products in the name of awareness, I am hoping that more and more of these campaigns get beyond the bumper stickers, beyond the hype of awareness. For those of us living with this disease - or beyond it - we are all too aware. Our families and friends are very aware. What we need is a cure, or at the very least, research toward better treatment options.

As I write this, a friend - a woman who has fought and beat Stage IV breast cancer three times already - is in the hospital fighting for her life again. The cancer has spread to her liver. She is 37 years old. When I was still in the throes of grief after learning of my recurrence, I was given this woman's information and told to call her. When we spoke, she told me she firmly believed she was here to encourage other women, to show them they can be stronger than cancer, and that she still has a lot of work left to do in this world. I don't know if she knows how much that conversation lifted me up out of some of my darkest days. She was and is such a beacon of hope for me and every other survivor who knows her. And what she needs is not another reminder dressed in pink, but rather funding for research into metastatic disease and how to stop it in its tracks.

Coincidentally, I had my tenth chemo infusion on Monday, October 1st. In two weeks I'll find out whether this new combination of drugs is working - and how well. As I sat in the green recliner Monday morning, a woman walked up to the nurse's station with tears streaming down her cheeks. She wore a scarf on her head. "Did you hear the news?" she said to one of the nurses. "The cancer is all gone - it's over." Even as I write this, I'm in tears thinking of how elated this survivor was, because I remember very clearly that feeling when I received that phone call last December telling me my cancer was gone.

I want to share just one other story, of a woman I met during my last round of chemo in mid-September. Her triple-negative, inflamattory breast cancer had spread to her muscles and skin, making the whole right side of her upper body immobile. Probably in her mid-50s, she was beautiful, with soft blonde hair and a big smile. She was worried about fitting into a dress for her daughter's wedding in January because treatment had made her gain twenty pounds. And the new treatment she was starting - as a last ditch effor to reduce the cancer so she could be admitted to a clinical trial - was going to make her lose her 17 months of hair growth again. She was upset she'd have to wear a wig to watch her daughter get married. She told me she is in constant pain. The doctors are at a loss, and I got the sense that she was just hoping to make it to January before she let go. While I didn't draw the luckiest card in the deck when it comes to cancer, this woman certainly put things in a new perspective for me. At least my cancer still has promising treatment options.

Painting the town pink - raising awareness - does little to save the more than 40,000 people who will lose their lives this year to breast cancer. Those of us living with this disease are pretty fed up with businesses who use our illness to make money in the name of awareness. But there are a few organizations who do good work - not just in October but throughout the year. They rely on this month to set their fundraising goals for the remaining eleven months. I implore you to do your research when buying a product with a pink ribbon on it - see where the money goes, how much to research new treatments, how much to actual patients who can't afford treatments or preventative care, how much to a business' bottom line.

And use this month as a reminder to be aware - not only of where your money goes but also of your body. It is the best indicator you have, and if something isn't right, you know it best.