Monday, July 21, 2014

Conversations with My 3-Year Old

One of the things that has surprised me most about parenting is how curious Quinn is. I expected the "Why, mama?" questions, just not quite so early. Lately, he asks about EVERYTHING. Here is a typical conversation for us:

Q: "Can Oliver come over to play?"

Me: "No, honey, not right now."

Q: "Why, mama?"

Me: "Because it's late, and he's having dinner with his family."

Q: "Why, mama?"

Me: "Because that's what people do at the end of the day -- have dinner with their families."

Q: "Why, mama?"

Me: "So we can catch up with each other and talk about our days, and eat healthy foods together."

Q: "Why, mama?"

Me: "So that we stay close as a family and have energy to grow and play."

Q: "So can Oliver come over to play?"

And then I just stare at him in disbelief.

Another conversation I've had to have with Quinn recently? Why our bodies are different, a chat made more interesting given my scars, my port, my tattoos. Read here on Scary Mommy to see how I handled it.

Friday, July 18, 2014

Life Savers

These buildings are where so much magic happens. A few weeks ago, my friend and Avon Walk teammate Shelby, a researcher at Genentech, asked me if I'd like her to try to arrange a meeting with some of the trailblazers in the Her-2+ research field while I'd be in town. "YES, PLEASE!" I think I wrote back immediately.

Shelby orchestrated that meeting, and it was one of the most memorable experiences of my life. Last Friday afternoon, my friend (and another teammate) Ginelle and I drove down to the Genentech campus, arriving nearly 45 minutes early because I was so geeky excited about what was about to happen.

One of the researchers is a guy Shelby met through Genentech's onsite daycare. His son is in class with her children, and when she found out he was on the development team for Kadcyla (the drug I've been on since last May), she might have told him my entire story and thanked him profusely and wept a bit.

Which is pretty much how I reacted when I met him last week.

I was so in awe of this guy, who is around my age, who has a 2-year-old son and was so amicable and open about his research and proud to show off his lab and just amazingly COOL as I stood there trying to think of just one of the million questions I had for him while also holding back tears.

He told me his dad died of cancer at just 50 years old.

He told me he's known as "the combination man." He plays with molecular combinations and tests them against breast cancer cells, most of them Her-2+ like mine were. He was a member of the small team that piggybacked a potent, bomb-like, extremely toxic chemo drug to Herceptin and got it to work, to deliver this bomb inside cancer cells that over-express the Her-2 protein without destroying the cells around them. He continues to play with combinations that will kill cancer more effectively and with less toxicity to the patient.

The other scientist I met is a true pioneer. When she came walking down the hall about twenty minutes into my conversation with the combination man, I could no longer hold back my tears. I don't remember if I hugged her. I was trying to maintain some composure.

She's been at Genentech most of my life, researching tirelessly (and also raising three kids). She was one of the primary developers of Herceptin, an antibody that binds to the Her-2 protein, signals those cancer cells to stop dividing, and tells the immune system to destroy them. Hands down, Herceptin has been one of the most important developments in treating breast cancer. She said it has been the best thing she's done in her life.

Mine, too.

I asked what was on the horizon because I'm always hoping to hear about the next big breakthrough, although I also understood that they couldn't go into too many specifics for so many reasons. They told me they're investigating what causes resistance to treatment. They're evaluating other drug combinations (a Kadcyla/Perjeta clinical trial is already underway). They're translating their successes with breast cancer therapies to other cancers. They're collaborating with researchers outside the U.S. They're working with regulators to speed things up where it might be possible.

They're energetic and enthusiastic and dedicated to their work. They're also scientists, and realists, and fully understand the wiliness of the beast they're up against.

I can't thank them enough for their help in slaying it. I hope they--and I--can continue killing cancer for many, many years to come.

Thursday, July 17, 2014

Around the Web

I've about recovered from the beating my body took last weekend. I admit I haven't been monitoring the headlines as closely as usual between walking almost forty miles and traveling with a toddler. But here's what caught my attention on the web last week.

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Researching targets for triple negative breast cancers

"If her approach is successful, we may have a new way to deliver drugs with precision: not just to cancer cells, but to any type of diseased cell or organ with a distinctive pattern of proteins on the surface."

And some not-so-great news from the clinical trial world.

"The long-awaited results showed that adding lapatinib [Tykerb] to adjuvant trastuzumab [Herceptin], either concurrently or sequentially, does not increase disease-free survival compared with use of trastuzumab alone in women with early-stage HER2-positive breast cancer."

We may someday be able to predict who will benefit from Tamoxifen. . .

. . . eliminating unnecessary side effects for so many women.

"A gene signature identified using a new approach has the potential to be used in the clinic to predict which patients with estrogen receptor-positive breast cancer will benefit from tamoxifen therapy after surgery, according to data published in Cancer Research, a journal of the American Association for Cancer Research."

And what if we eliminate hormone receptors altogether?

New developments for treating estrogen-receptor positive breast cancer from one of my favorite companies, Genentech.

More research suggesting we are overdoing it with mastectomies

"'Most patients have very minimal increases in life expectancy, one to seven months," Tuttle said. And that difference was spread over two or more decades, especially in the younger women, he said."

No regrets here.

Finally, are antioxidants harmful to cancer patients? 

Let the conversation begin (or continue). When I was seeing my naturopath regularly, he suggested I have infusions of Vitamin C to combat cancer growth, but my oncologist strongly advised against it. I went with my oncologist, and now I'm rethinking the supplement I add to my occasional morning smoothie, too. Do you take supplements? What are your thoughts on antioxidants? Does this study change your mind at all?

And We Walked . . .

We did something a little different this year: we formed an official team for fundraising, Team Booby and the Beast. It was so official, we had shirts made.
My team included my best friend in the world, Alana, who reminded me we've been friends for going on twenty years; Shelby, another amazing woman I've known half my life; and Ginelle, who's married to my husband's best friend from childhood.

The four of us raised an impressive $16,065.29. Yep, that's me tooting our own horn. What can I say? I'm proud of us. Thank you to all our generous supporters for making this happen. The San Francisco walk alone raised $4 million this year for research and support services, including chemo and diagnostic tests for those who can't afford it. 
I want you to know a little more about these teammates of mine, these women who come out year after year to wreck their feet with me and beg their networks for donations so that one day, we can say we helped end this disease.

Alana came to visit me when I had my last round of chemo #1, and got my news that Christmas that my first post-chemo scan was squeaky clean. She is the only person who's been with me to the dingy part of the hospital where I used to have my PET scans (lucky her). On the walk, Alana is the one who will suggest jogging for a bit to change up the muscles you're using (and the thing is, it actually works). She spotted the girls handing out mimosas at mile 24, and made sure we all stopped to grab a cup. When we realized the buses to the start left at 5 a.m. on day one, she suggested we Uber it to the start instead, which meant we got to sleep in until 5:30. Also, she designed our team shirts. In short, she makes my life easier and more fun and far more beautiful.

Shelby is a friend from college, one of the women who cut off her hair to make a wig for me. She is also a researcher at Genentech, and was the first person who made me feel at all better about the fact that I had Stage 4 breast cancer. She talked to me about Herceptin and gave me confidence that I could do this. Shelby is as emotional as I am, and wept with me as we crossed the finish line, the four of us holding hands. We were saved by the guy handing out free It's-its, a San Francisco ice cream cookie treat I'd never experienced but now crave daily. Shelby still reminds me that I'm doing this thing, this beating cancer thing, and almost more than anyone she makes me feel okay about my diagnosis. I'll write more on Shelby and Genentech in another post soon.

Ginelle hardly knew me three years ago, beyond the fact that I'd married her husband's best friend, but when I was diagnosed she left her family to come visit and cook meals for our family. Last fall, she treated me to a weekend at Canyon Ranch, which has to be the most relaxing place on earth. I'm pretty sure we'd have been friends regardless, but cancer sped up that process. Some people run away from the burning building; Ginelle is the type to run straight into it carrying ice water and oxygen masks.

Ginelle is so prepared, we dubbed her the team girl scout. She kept us supplied with electrolyte powders and gummies, bandaids, body glide to prevent blisters, mole skin when we got them anyway, scissors, foam rollers, Advil, Epsom salts, and things we'd never even heard of, like silicone toe caps that I probably should have used, given the state of my toenails right now. She kept us on schedule in the mornings and ahead of the pack so that we were even the first to use some of the port-a-potties on day two.
All four of us, our feet hurt. We had blisters and bruised toenails, sore bunions and throbbing arches. We were chafed where our sports bras rubbed too tightly. Our hips and knees ached, especially walking down those steep Marin County hills. We were so exhausted we were delirious and punch drunk.
Which may explain why we immediately signed up for another year. We'll be going back to my old stomping grounds and walking in DC the first weekend of May, 2015. We'd love it if you'd join us, too.

Monday, July 14, 2014

My Writing Process

Chris and I recently finished construction of a two-car garage (and conversion of our existing one-car garage into a mother-in-law suite). It was a several months-long project that finished up just in time for us to park under cover before the steering wheels became third-degree burn hazards. 

When I’d moved to Phoenix after law school in the summer of 2008, I hitched a U-Haul trailer to my car and towed it across the country, that 124 cubic feet holding everything I owned in the world. Chris had a small apartment’s worth of stuff, and we combined our belongings--as couples do--but had a number of boxes and bins that neither of us unpacked. We had a storage closet, and that’s where these things went. Later, we moved to a slightly larger apartment, then our first house, then this bigger house we’re in now, and still these bins and boxes of who-knows-what stayed sealed and on our to-do lists.  

During construction, we kept this extraneous stuff in storage along with other items--small furniture, our bikes, luggage--that had to be moved out of our house or garage to make way for the construction crew. So Chris made it a priority--a command really--that we would not move these bins and boxes back into our new garage without going through them first. 

When he was home between trips the last weekend of June, we spent a solid day while Quinn was at preschool making piles out of the contents of these containers: trash, donate, or keep. There were the bridesmaids dresses I’d worn in three separate weddings (none of which still fit, to my chagrin), all of the ski clothes I’ve owned since 1995 and haven’t used since before law school, several sets of duvet covers for that period in my twenties when it was the only way I could afford to redecorate, a good number of notebooks and saved exams from college, including the graded lab results from this catastrophe, and my journals, notes, and writings from creative writing classes I took in high school and college. 

I spent too long (stay on task, Campisano!) poring over these, wondering why I hadn’t focused more on my writing between then and cancer. Sure, I wrote advocacy letters and proposed legislation and, later, law school exams and a harmless-sounding “note” sixty pages long for law review. I wrote appeals to bankruptcy judges and proposed settlements and codes of conduct and policies on sexual harassment. But I wasn’t writing for myself.

Until my diagnosis.

And now I can’t stop writing for myself. 

Quinn and I are visiting my mother-in-law (more on my weekend walk in a few posts to come soon), and the fourteen year-old girl who lives across the street came over last week to entertain and play with Quinn. She wore a Batman bracelet I asked about. She told me the meaning, then said her “internet friend in Pennsylvania” had one just like it. 

I have those, too -- Internet friends, women I’ve never met (and a couple I have), whose stories are so woven into the fabric of my own story that when one asked me if I’d participate in this “Writing Process Blog Tour,” I didn’t hesitate even when I realized it was a chain letter-type thing, which are not my favorite. I didn’t hesitate because Joanna’s words so often speak to precisely what I’m feeling at the very moment I read them, it’s uncanny. I wanted to do this post, continue this thread, because I think our stories tether us to one another as human beings. 

Whether we are in Arizona or Tennessee or London or Nairobi, our stories connect us. This may be especially true in the cancer community. Stories inform, educate, offer solace, and call forth a cheering section. Stories can be an escape, an adventure, make us laugh, punch us in the gut, take us to faraway places, or bring us home. 

How and why I write now is intricately bound to this internet community and my friends who are also out there sharing their stories, putting on their brave faces. So I couldn’t help but do this post. 

Each of us bloggers was tasked with answering the following questions, then passing the torch on to three other writers/bloggers whose work we admire. Thanks for including me, Joanna.

  1. What are you working on now?
  2. The book, always the book. I’ve set a goal for myself to finish draft one by Labor Day, which seems so fitting. I’m also trying to keep this blog going, because I think it serves a different purpose--sharing pictures of Quinn, of course. I occasionally write for Huffington Post, or do guest blogs, too, which you can find here and here and here (!) this Friday, the 18th. There is also be a cool partnership in the works that I’m deeply excited about. 
  3. How does my work differ from others of its genre?
  4. There are loads of mommy-bloggers out there, but I don’t know of any others with Stage 4 cancer. And there are a lot of cancer bloggers out there, many of them moms, some of them also living with Stage 4 breast cancer, but the pool really starts to narrow when we get to that point. I hope I bring a unique perspective to this sphere; it is something I am always considering. When I start to doubt myself, I remember this adage: everything has been done, but not everything has been done by you
  5. Why do I write what I do?
  6. I hope it helps. I love it when I get a note from a stranger saying my writing hits home, that she feels less alone in her fears because of what I’ve shared, that she’s also learning to take it day-by-day. I also write for less altruistic reasons: I write because I feel antsy when I don’t, better when I do, and I believe that processing all of the shit I’ve been through helps clear it out of my system, helps me be healthier. 
  7. How does my writing process work?
  8. It usually starts with one sentence. It always starts with a sentence, but what I mean is sometimes the beginnings of an idea will come to me at the most arbitrary times, so I do what I can to write them down, those sparks. Like Joanna, I rely on the Notes function on my phone a lot. For my blog posts, once I have an idea in mind, I typically write through in one fell swoop in a couple of hours or less, usually at night after Quinn has gone to bed and the dishes have been done and Orange is the New Black has been watched. Most of the time, the post needs some editing, so I give it another look in the morning, if Quinn’s at school, or in the afternoon if he happens to nap in the car, or the next night -- whenever I can get to it, really. For whatever reason, the book is different. The familiar, conversational voice of the blog doesn’t seem to translate to that format quite the same. I want to give more detail, so I have to research notes and journals and emails I’ve sent to get the facts straight. My process when it comes to the book is more tedious. I also want to make sure I’m not completely plagiarizing myself, so I try not to tell every story the same way I told it here. It is more painstaking, but it also (I hope) will tell a more complete story than I’ve been able to on my blog. The blog is fun; the book is work. I love them both, but they are different beasts.
To pass the torch along . . .

The first is Emily McDaid, a dear friend of mine from college who writes suspense novels, runs a PR firm, and raises two young children with her husband in a suburb of Belfast, an ocean away from where she grew up. In a word, she’s superwoman. She writes frankly and honestly about writing fiction and the grueling, humbling self-publishing process. She writes about living and raising her children in Ireland, and how it compares (and sometimes doesn't) to her home in upstate New York. 

Second is Lara Huffman, who writes the blog Get Up Swinging. Lara is one of my aforementioned Internet friends, and we’ve never met in person but one of these days I want to share our stories over a beer, in person. She is a feisty breast cancer survivor and incredible writer whose snark I love so much. Lara writes about breast cancer not only as a survivor but as a woman who lost her mom to the disease at a terribly young age. I can’t wait to see what she’ll write next.  

Finally, Beth Gainer is another woman I met through the online breast cancer community. Like me, Beth is a mom. Beth writes about her experiences and emotional state after cancer (and how there's never truly an "after") and motherhood on her blog, Calling the Shots. She is also a professor, a published author, and a patient advocate (it’s what her book is about--how to navigate our complicated healthcare system in the face of a terrifying diagnosis). Her posts are always insightful, thought-provoking, and beautifully composed. 

Check out these writers, especially next week, when they'll be posting about their own writing process and introducing some of their favorite bloggers to keep this chain going.