Thursday, July 26, 2012


Yesterday morning I was prepared to publish a rant against my insurance company as far and wide as my social networks extend if I didn't get an approval by noon. At 11:15 a.m., I got a call from my oncologist's office that the approval had come through; I started chemo again today. I know I'm lucky to have access to and coverage for the most cutting-edge medicine available. But the last ten days have given me a tiny peek into the window of those who are constantly fighting with insurance (or don't have it at all). It was a scary, dark, infuriating place to be.

I was prepared to beg, fundraise, sell all my clothes on e-Bay, do whatever it took to get this done. But at about $15,000 worth of infusions every three weeks, indefinitely, we were looking at upwards of $225,000 per year out-of-pocket. And even though it FEELS like we pay that much toward my law school loans, our pockets do not run nearly that deep.

Here's what the last ten days have taught me. You MUST be your own advocate. You must demand treatment. You must be relentless, be the biggest pain-in-the-ass your doctor's office and the insurance company have ever seen. Before the approval came in yesterday, I finally told my doctor's office I was going to start treatment today; it was up to them to make it happen, whatever magic wand they had to wave. I learned that you DO NOT GIVE UP.

This experience also got me thinking (again) that if insurance companies started paying for screening earlier and doctors started listening to young women who come in with concerns about their breasts instead of insisting that it must be fibroids or blocked milk ducts, then maybe we could start to really cut down on costly, aggressive treatments for advanced disease. Here are a couple of other women in my camp, reiterating this point.


When you find out you've got cancer, time seems to move as if it's trying to swim through mud. You watch the clock constantly as you wait for answers, wait for treatment, wait for a cure. Because you've been through this before and know how well your cancer responds to chemo, you know how important it is to have the poison that will save your life. You are eager for it. You try to fill your time with phone calls to someone - anyone - who might be able to help.

I found out on Tuesday, July 17th that my cancer had come back. Recurrence is one of the scariest words that exists for people who've had cancer. And amazingly, the sky did not fall; there were no floods, tornadoes, or locusts signaling the end of days. I felt like my world was crashing around me, but the mail still got delivered, clients still scheduled meetings, and a group of people walked into a midnight screening of a movie in Denver never to walk out again. Life -- and its chaotic twists -- kept going.


My doctor's office promised me we'd have an answer from my insurance company about starting chemo within 24-48 hours. It took about eight days longer than that. That's one day longer than it took God to build world and still have one day leftover for resting. Eight days is an eternity in insurance decision limbo land. There is almost not enough Xanax out there to get a person through those excruciating moments. Luckily, I also have a lot of love. My supporters - and the messages of strength they send me - continue to amaze me.

I've got three little masses in my lymphatic system - so not all that bad, as far as Stage IV cancer is concerned, if you can find a silver lining. But I've also got an extremely aggressive cancer (grade 3, HER2+ for those of you who know this stuff). Every day without treatment is another day my cancer had time to grow, evolve, spread its tentacles into the rest of my body. I know I can beat this; I just needed the (readily available, already in stock at my doctor's office) medicine.

It took nine days of swimming through the murky, muddy, shitty waters of the insurance world. I've said it before + it bears repeating: I do not know how people face this without insurance coverage. Something in our system needs to change, starting with paying attention when requests from an oncologist's office are stamped "URGENT".

Friday, July 20, 2012

Round Two

To say I was blindsided this week is putting it lightly. My oncologist called with PET scan results on Tuesday; it lit up in a couple of areas in my chest wall again, and in my spleen. I don't know whether this is technically a recurrence or just the last little bit of disease left over from my first round last fall. In the end, it doesn't really matter. It's back.

Assuming insurance approves it, I'll start on a new drug, Pertuzumab, along with Herceptin and Taxotere, a targeted treatment that will hopefully wipe out the last of this shit. It means chemo and all it entails until they come up with something better. It means losing my hair again (really, it's the eyeybrows and eyelashes I miss the most). It means mustering up the strength hidden in my pinky toes to keep fighting for as long as it takes, until they come up with something less toxic. My doctor has said to treat this like diabetes or any other chronic illness - maybe not curable, but manageable and treatable. Still, with no end in sight, no "finish line" to cross, wrapping my head around this new course of treatment is throwing me for a loop.

So I'm setting my sights on events instead. I will walk Quinn into kindergarten, holding that chubby little hand in mine (ah, who am I kidding? He'll be sprinting ahead, eager for a new adventure, but I'll be there to look on proudly). I will be there to hear his valedictorian speech when he graduates from high school. (What? I might as well dream big, and seventeen years from now is pretty big dreaming). In my mind, I am also there when he marries the love of his life, clinking my champagne glass with Chris' over what a great job we did raising such a strong young man.

Chris and I met in the spring of 2005. He was working on his dissertation, up late writing most nights and not sure he'd even stay in D.C. long enough for a relationship to make sense. I was considering law school in California. That summer, Chris went to Africa for a couple of months (but he called me from the satellite phone, so I knew he liked me). In August, I went deep-sea fishing in Alaska for work, and Chris was there to pick me up at the airport when I got back. Chris had gotten word from the Smithsonian that they could extend his funding and keep him in D.C. another couple of years, so I decided to stay put and enroll at American University. At some point late that summer I turned to Chris and said: "So, are we going to do this?"

That was just over seven years ago, which is not all that long in the grand scheme of things. But the two of us, we are a force. Add in the little Bug and you've got yourself a formidable army here. We work, this family of ours. And so my boys and I are gearing up, putting on our armor and heading into battle again. We may not look like much, given my battle scars and Quinn's pint-sizedness and Chris' graying at the temples. But watch out, cancer - we are stronger than you think and now we're pissed off, to boot. We are coming for you, about to blast you out of every corner where you're lurking. Because here's the thing. With us, the answer has always been, "Yes, we are going to do this."

Monday, July 16, 2012


In a yoga class last week, my instructor brought us into eagle pose. She told us the story of Vishnu, the god who rode into battle on an eagle. "Feel your strength in this pose. By choosing this practice you are choosing to keep yourself alive." I honestly don't know enough about Vishnu's ride or battle to know what the correlation is here, but the idea that I could choose to live stuck with me. Of course I will keep myself alive. Back to that point in a minute.

* * * * *

I was running late for work one day last week, one of the few mornings when I had a 9 a.m. call scheduled. As Chris and Bug were about to head out the door, I realized I hadn't put anything together for Quinn's lunch. As I yanked open the refrigerator door to look for inspiration, the bottom shelf fell straight off, sending an unopened bottle of wine crashing to the concrete kitchen floor. I mopped it up and picked up shards of glass as Chris microwaved some mac-n-cheese. Then as Chris threw the wine-soaked towels into the washing machine, I quickly diced a watermelon. I tossed in a squeezable yogurt, and my boys were out the door. This left me approximately 12 minutes to shower (so I wouldn't smell like a drunk), get dressed, and get on my way. Honestly, thank God for short hair and a casual office.

At a stoplight about 5 minutes from my office, I got an email that the meeting had been cancelled. At least I could stop driving like a maniac. As I pulled into a parking space in the garage at work, a woman whose car I've noticed before pulled in next to me. She has one of those breast cancer license plates. We were walking toward the elevator together and I asked her if she was a survivor. She said yes - six years now. Turns out we even have the same plastic surgeon. I mentioned that I was going to have my first follow-up PET scan this week and admitted that I was pretty anxious about it. (And that might be the understatement of the century.) She said she still gets nervous for her annual scans. Another friend explained that just as you've gotten past cancer and started to imagine the life you could live, you're reminded that things don't always go well. As cancer survivors, we know what it's like to get a bad result.

Chris reminded me several times over the past few days - as I broke down in sobs on the couch or felt sick to my stomach with anxiety - that worrying about it won't change it. He's right, of course, and so today, on the advice of another survivor, as I sat in the dark room waiting for the radioactive glucose to make its way through my veins before the scan, I visualized healthy cells. I imagined Quinn starting kindergarten and pictured our mother-son dance together at his wedding. I envisioned all of the positive energy of every one of you who has wished me well through this floating around me, enveloping me with warmth and light and hope. I breathed, and I meditated.

* * * * *

Last week, maybe the same day I met the survivor in my parking garage, I received an email from an old friend (also a cancer survivor), letting me know that a former mutual colleague had passed away. She wrote: Amazingly, Peter told us last year that he knew he would die when he was 86 years old. Both parents and an elder brother had died at 86. When I expressed chagrin or doubt he’d say, “Dear, I know a little something about genetics, you know, and I’m telling you what I know.” He was either so smart, or so determined, or both, that he died yesterday, one day before his 87th birthday. 

All of this to say that I've been thinking so much about mortality over the last year, and I absolutely love the idea that you have the power to choose when you leave this world, to choose life. This message was coming to me in so many forms over the last few days, just as I needed reminding: I am not leaving anytime soon.

Sunday, July 8, 2012

Full Circle

A couple of weeks ago I had my last visit to my plastic surgeon for awhile. Surgery to swap out the expanders for implants likely won't happen until at least November, which will give my irradiated tissue time to fully heal before being operated on again. I'm in no rush to go through another surgery anyway.

Walking out of my surgeon's office, I literally almost ran head into the doctor who delivered Quinn, the doctor who told me he was sure the lump in my right breast was just a blocked milk duct; he had said to treat it with hot compresses and by expressing my milk more frequently. To be fair, even after I switched doctors and got a second opinion, my new doctor also said he was sure it was nothing.

Dr. F - Quinn's delivery doctor - was walking in to my suregon's office with his wife, who is also his receptionist. He was holding onto her elbow to guide her, probably how he'd done thousands of times before in their forty-plus years of marriage. She recognized me, but it took him a minute longer. I knew in an instant why they were there. Their faces - full of angst and panic and distress - spoke volumes to someone who's been through cancer.

We chatted in the doorway for a few minutes about the last year. She was having her pre-op appointment for her expander swap-out surgery (no delay for her because she hadn't had to go through chemo or radiation.) Mrs. F was "lucky," although I wouldn't wish any part of this disease on my worst enemy. Her cancer was caught early, only Stage 1, and she had opted for a double mastectomy because of a family history. We commiserated about how hard and uncomfortable the expanders are - like unwieldy grapefruits under our skin. I showed Dr. F pictures of Quinn and told them about completing treatment. He asked if I'd have more kids; I told him I probably wouldn't be able to, that I just want to be around to watch the one I've got grow up.

I walked away from this strange encounter in a kind of stupefied awe at how cathartic it had been. I hadn't realized quite how much anger I'd carried with me about my doctors ignoring my concern, telling me they were sure it was nothing, until it all melted away that morning. It turns out there's a huge amount of relief in forgiveness. (I'm pretty sure gurus have been teaching this for years.) Seeing Dr. F and his wife walking into that office, all I could feel for this couple was empathy. I wanted to wrap them both in a big hug and tell them everything is going to be okay. I sure hope that's true.