The Color of Forgiveness

I'm sitting here looking at my Mother's Day cards from Quinn -- one store-bought that starts "Dear Mommy, Thank you for tucking me in...", one handmade with a crooked heart drawn on the front. And I'm crying all over my kitchen table. I hugged Quinn extra hard at preschool drop-off today, his last day before the school year ends.

***

In the last few weeks, our family has been facing the continuing decline of Chris's mom's health, which has meant Chris has been traveling up to northern California to spend time with her every other week. Between Chris's travels and my time in DC, we've hardly spent any time together as a family in a month.

Quinn and I FaceTime with Grandma Maryann a bit, when she's feeling up for it, but Chris doesn't want how she's doing now to be Quinn's memory of her, so it's unlikely the two of us will see her in person anytime soon.

At school, Quinn drew a picture for me for Mother's Day, two stick figures holding hands. He tells me, "Mommy, that's me and you!" But on closer inspection, I realize both faces are frowning.

"Why do we have unhappy faces, buddy?" I ask.

"Because we're sad about Grandma."

Oh.

***

All of this apart-ness and upheaval and emotion has certainly taken a toll on Quinn. He's alternately sweet as can be or acting out, defiant about every single thing I ask him to do lately, whether it's brushing teeth or turning off the TV or not running away from me in a crowded grocery store.

Yesterday, as I was driving Quinn to a new park to play with his friend Sydney, I was trying to focus on where the map was telling me to turn, trying to find parking, trying to communicate with Sydney's mom about where to meet without taking my eyes off the road, and Quinn -- in his utter and complete excitement about seeing Sydney -- would not stop asking me, every thirty seconds, how much longer we had until we got there. "Quinn! Can you please be quiet so I can focus on the road?" I asked him more than once, then felt a stab of guilt for being an asshole.

At school drop-off and pick-up the last few weeks, I find my conversations with other moms gravitating toward how tough this age is. This age being 2 to 4? 5? We wonder when it gets easier, joke that we need happy hour at three in the afternoon, talk about pulling our hair out. And even as I participate, I know better. I know how precious this life is, what little (if any) time any of us are guaranteed, how -- difficult or ornery we might all be on occasion -- my time with my boys is everything.

***

This morning, with Chris back in town, I went for a hike. I was heavy-limbed and clumsy. I twisted my ankle (it's fine) and felt unsure of my steps a good portion of the way. Eventually, battered and out of breath and frustrated, I made it to the top.

The top.

A photo posted by Jen Campisano (@jencampisano) on May 18, 2015 at 8:17am PDT

Back down the mountain, my head clearer than it had been in days, I checked my phone and got the punch-to-the-gut news that my friend and sorority sister Jenny's six-year-old son Michael died last night. It wasn't so much a surprise as it was a stark reminder of the brevity of our lives.

Michael had been diagnosed with a rare brain tumor a week before he started kindergarten last fall. Kindergarten.

That one pretty much takes the cake for cruelty, Universe.

And yet, Jenny and her family did not approach Michael's cancer with anger or bitterness. They celebrated his life. They spoke out to raise awareness about (and a lot of money toward) childhood brain cancer. They made to-do lists and checked them off every day, a tally of their accomplishments together as a family.

At his memorial later this week, they're encouraging everyone to wear yellow, Michael's favorite color. Yellow, the color of sunshine and hope, optimism and new beginnings. The color of forgiveness.

So, in Michael's honor, forgive yourselves, parents, for the occasional times when you're not doing your best. Then go hug your kiddos a little closer, a little tighter. You could probably both use it.

You can read more about Michael's inspiring story here and I encourage you to make a donation to the fund created in his honor by clicking here. 

And I'll close with Jenny's own words from that Huffington Post article:

Jenny said she wants to remind parents to "enjoy every precious moment" with their children.

"The truth is that I often complained about how hard it is to be a parent," she said. "I do not back away from that sentiment -- I still think it is hard -- but I wish that in some of the moments when I was feeling overwhelmed or frustrated, I had the perspective to know that I was the luckiest person on the planet to have those kids driving me crazy."

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?
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. 
2. How does my work differ from others of its genre?
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. 
3. Why do I write what I do?
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. 
4. How does my writing process work?
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. 

Around the Web

Here's what I found this week. Have something you'd like me to feature here? Please leave a note in the comments or send me an email.

Reducing the risk of recurrence in hormone-sensitive cancers

"A new treatment option is more effective than tamoxifen at preventing a return of breast cancer in young women, according to the results of two international trials."

Still requires shutting down ovaries, unfortunately.

And another promising option for post-menopausal breast cancer patients

"The inexpensive anti-malarial drug hydroxychloroquine (HCQ) reverses resistance to tamoxifen, a widely used breast cancer drug, in mice."

Anti-malarial? Really?

(Thanks to my friend Andrea for this one.)

At least one insurance company using incentive program to "reign in costs"

Would you want your doctor receiving financial incentives from an insurance company for how he or she prescribes the medicine you'll receive? Would you care? In an era of more and more individualized medicine, I'd be concerned the quality of care was at risk. But maybe that's just me?

(Thanks to my friend Andrea for this one, too.)

Decoding the role immune cells have on metastases

"Normally, macrophages -- chubby cells with a big mouth-like orifice -- are friends, not foe. They gobble up dead tumor cells and virtually any kind of debris, including infectious organisms. Picture the old Pac-Man video game that consumed dots.

But macrophages, Egeblad said, also send signals in the vast communication network of the body allowing cells to "talk" to each other.

"What we found is that when you give chemotherapy, the macrophages come in and clean up all these dead cells but they are also sending signals to the [tumor] cells that are not killed in the first round of chemo. And those signals are making it easier for the tumor to bounce back after chemo," she said."

I had no idea cells could be chubby.

Immunotherapy is all the rage lately

"A promising new study from Mayo Clinic, in conjunction with Caris Life Sciences, points to immunotherapy as a possible treatment option for patients with the difficult-to-treat triple negative breast cancer mutation."

I sat in on a Twitter chat (tweet chat?) earlier this week that focused on immunotherapy and where it is headed. Big things are happening, if you believe all the scientists. All of us patients are trying to temper our excitement with the reality that many of these amazing/brilliant/promising results are still in the very early trial stages. But I am staying tuned...

A friend's cousin and her beautiful love story

Worth the read AND the incredible photos taken by my friend Kristi's wildly talented sister Joy Marie.

The Bravest Thing

Chris and I started watching Season 2 of House of Cards last night, and there was one line of dialogue where a guy is talking about grief after losing his wife (not a spoiler, I promise). He says something along the lines of, "I mean, who dies of breast cancer at 31?" Chris and I both laughed awkwardly. It isn't funny.

But it means that -- little by little -- word is getting out about the possibility of death from breast cancer at a young age. It's mentioned in a Netflix TV series, for crying out loud! Maybe, little by little, people are waking up to the reality that this disease is not a "good" cancer, not all pink and happy, not something to be trifled with or taken lightly.

In that vein, I want to do my part to give some recognition to metastatic breast cancer. That's what this blog is about -- shedding some light. But this blog is not quite enough. So I wrote this piece, which was published here. Please take a peek.

I don't know why I'm so nervous to share this here, but I think it relates to how weird I feel about self-promotion. But then, I think if I really want to be brave, I should tell my story to anyone who will listen. I should find as many outlets for it as possible and then do my best to make sure it reverberates. I hope you'll help me by sharing it far and wide. Shout it from the proverbial rooftops.

Then I'd love to hear your story, too. Tell me how cancer affects you. As Sara Bareilles says, "I wanna see you be brave..."