Around the Web

Here's what caught my attention around the web this week.

A paradigm shift.

I'm not sure I could fully adopt this woman's way of thinking, but I do think it's important to examine how we talk about disease. Are we battling? Are we warriors? Or are those of us diagnosed with cancer just doing the best we can with some shitty luck? 

One woman I know talks about shifting our thinking away from "fighting cancer" and more toward "creating health." Now that is an idea I can get behind. What about you? What words do you use to talk about cancer?

Why #BCSM is my favorite hashtag.

Most Monday nights, I'm not able to participate in the Tweet chat sessions accompanied by the #bcsm hashtag. But I still use it as a call signal when I'm feeling at my lowest, or when I have news to share, or when I want to talk to someone who knows exactly what it feels like to be buzzing on steroids at one in the morning. Someone always answers the call. If you haven't checked out the chats, you really, really should.

Joan Lunden has breast cancer.

I wish her the absolute best. I pray chemo is as easy as possible for her. I hope she uses her platform as a celebrity and journalist to shed some light on this disease -- to educate, not just bring "awareness."

A possible new way to fight some breast cancers

"[Researchers] found that women were 4.4 times more likely to have a cancer recurrence during tamoxifen treatment when their main tumor had a high ratio (2:1 or greater) of androgen receptor-positive cells to estrogen receptor-positive cells."

The 3D news that was everywhere this week

When I was first diagnosed, I was asked to volunteer for a 3D mammogram to help further research into whether such tools were beneficial. I don't know if my own 45-minute, highly uncomfortable session added anything to this particular study, but I'd like to think I helped a little. Now if only they could figure out a way to PREVENT or CURE breast cancers, instead of just seeing them.

On that note, some researchers are looking at immunotherapy for treating metastatic breast cancer, thank you and amen.

This: "Unlike maintenance chemotherapy, with its associated cumulative toxicity, a therapeutic vaccine may offer clinical benefit with few adverse effects. The hope and promise is that women with MBC who mount an antibody response to a vaccine may experience significantly longer median survival and a better quality of life."

And, I just realized this article was from 2013, so here's hoping those scientists have made some significant progress since then! I'll see what I can find out for next week's round-up.

My Summer Plans

I told you I'm growing out my hair, but the truth is I've set an even loftier goal for this summer: to finish the first draft of my book. In the last few weeks, I've also been writing about my experiences for a couple of other blogs, which I hope to do more of going forward. For now, you can find those posts here and here.

As for the book, my agent and I are buckling down. I've drafted my proposal, my bio, my intro to potential publishers, and maybe 2/3 of the actual book itself. It is a ROUGH 2/3, to be sure, but it is written. I've just Got. To. Finish. This. Thing.

I'm feeling very inspired. A couple of weeks ago I finished reading Wild by Cheryl Strayed and almost immediately started at the beginning again. Reading this book feels somewhat like the trajectory I've had writing my own; it took me a half-dozen starts and stops over the last couple of years to get past the first chapter, but once I got into the meat of it, I could hardly think of anything else. (If you haven't read Wild, I highly recommend it.)

And so it is with this project of mine. I can hardly think of anything else lately. Maybe my book won't get read, but maybe it will. Maybe it will help one person. Maybe a few dozen. Maybe my story will resonate and reverberate and be made into a movie starring Natalie Portman (Chris likes her and she's willing to go bald). No matter what happens, I feel compelled to get my story out in the world, to fill in the many blanks that weren't quite right for blog posts or Facebook status updates over the last three years. 

Some people say writing a book is like giving birth. If that's the case, I'm feeling a strong urge to push right now. My guess is there will be a lot more work than I can even imagine possible, but my hope is that I'll have something incredible to show for it when I'm done. I can't wait to share that with you guys. 

If I'm spotty here over the summer, it's because I'm pouring my creative efforts into birthing this book. With no changes in my health (hallelujah), I've been kind of feeling like I am just updating you on life raising a toddler anyway, and there are plenty of blogs for that. I will update here when I can, or if anything changes, or if Quinn does something particularly adorable. Probably when I finish walking 39.3 miles next month. Certainly when I have my next scan in August. And absolutely when I hand over my manuscript to my agent to see if he can find it a home. 

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.

Flying Solo

This last week has been rough.


Chris has been out of town, analyzing soil samples twelve hours a day in a lab six floors underground somewhere in Minneapolis. Quinn and I are on our own. Quinn has woken me up most mornings by kicking me shortly after six a.m., moaning and groaning and whining that he wants "bres-feth". Over and over I remind him he has to stop whining, to say please, to not kick me, to no avail.

Mid-week, I told him he could go pour his own cereal and watch a show on his iPad. He responded, "I'm not old enough, mommy." Then: "Get me a waffle."

Me: "Say please."

Q: "Waffle please." Then, when we'd gotten to the kitchen, "I need green juice!"

Me: "Say please."

Q: "Please I need green juice?" he asked. Then he whined, "I don't want that plate! No! The orange one!" He was near hysterics over a damn purple plate. I hadn't even had coffee yet.

Me: "Say please, Quinn." I could feel myself growing more aggravated. I was ready to throw all of his plastic plates away, but I restrained myself. I mean, look at this face. You couldn't stay mad for long, either.



He ate two bites of waffle and told me he was done. I couldn't tell if my eyes were burning because they were so tired or because I was about to cry. Over a three-year-old and his waffle, for chrissake.

This morning, he didn't want to pick out an outfit, but didn't like the one I picked. He wanted to take his brown blanket to school and wrapped himself in it like he is a superhero, but then he didn't want it wrapped around his body in the carseat. He was mad that I couldn't fix it while I drove.

And when I dropped him off, he clung to me like he hasn't in a very long time, begging me to play with him just a little bit more, sobbing when I told him I had to leave because I have a dentist appointment and a doctor's appointment today. My heart ached. I couldn't wait to get a little break after an incredibly rough day yesterday, but when the time came to leave him, all I wanted to do was hold him and apologize for my impatience, my shortcomings as a Lego builder, my lack of energy this week.

I cried to Chris on the phone yesterday (Happy Father's Day!) because I'd seen a little girl in Quinn's class writing her OWN NAME on a piece of artwork last week. She'd drawn a picture of her mom in a red dress, and it looked like an actual mom in a red dress. Quinn scribbles in green and calls it a map to our house. I can't even take the time to get him to hold a crayon correctly, let alone teach him how to write letters. I'm pretty sure he thinks the alphabet goes "A, B, C, Q, R, S, W, X, Y and Z."

I try so hard not to compare, and maybe I wouldn't if I knew what was normal, what it was like to raise a child outside of cancer treatments, what it was like to have energy more than fifty percent of the time.

I had chemo last Monday, the day after Chris left for Minnesota. That night, I was up late because of the steroids, but the rest of the week I went to bed at the same time as Quinn: 8:15 or so. I got more sleep last week than I have in months, and I was still dragging most days. My head felt like it was in a vice, either from the chemo or the triple-digit heat, I'm not sure. Quinn and I watched an excessive amount of television, including "How to Train Your Dragon" at least three times.

Chris is home next week for a week, then off again for a couple of weeks in Kenya on the same day I have my next round of chemo. I was so panicked at the idea of another week like this last one, I called my mom yesterday and begged her to come visit the first week of July.

As Quinn wanted me to know as he clung to my leg this morning, sometimes you just need your mommy.

Around the Web

Here's what caught my attention around the web this week. And thanks again to my lovely survivor friend Kathryn for sending links along!

I'm afraid to see this movie, but I may read the book. Have you?

My husband says I come from a long line of criers. I think a good cry (and good literature) is worth it sometimes. I'd love to hear your thoughts, though.

Here's hoping my killer T cells are abundant.

"The Cancer Research UK study found that when these immune cells were present, survival improved for women with ER-negative and ER-positive HER2-postive breast cancer."

Advances in immunotherapy for treating melanoma show promise.

"“Just a few years ago, median survival for patients diagnosed with advanced melanoma was as little as a year or less, and only approximately 20-25 percent survived two years, so it’s truly remarkable that we’re seeing a median survival over three years in this trial,” said lead study author Mario Sznol, MD, a professor of medical oncology at Yale School of Medicine in New Haven, CT."

And huge advances for treating a common form of leukemia, too.

"ASCO chose to highlight the findings because [this drug] is already approved by the Food and Drug Administration for use against a different blood cancer called mantle cell lymphoma, as well as for chronic lymphocytic leukemia.

That means cancer specialists can start offering it to their patients right away."

I love news like this.

Promising early stage results for drugs that fight ALL THE CANCERS.

"The drugs are already being used in clinical trials and have been granted Breakthrough Therapy status by the Federal Drugs Agency in the US, which means their development has been speeded up.

They could be available within just a few years if approved by European regulators and the National Institute of Clinical Excellence."

Have I mentioned I love news like this?

A reminder to eat more greens.

Sadly, this argument does not work on my 3-year-old (although he doesn't care for most red meat, either).

Is breast cancer a chronic disease? For some, thankfully, yes. 

It's not chronic for enough of us, the way diabetes or heart disease is, in part because the side effects of cancer treatment can be crippling for many. But we are making strides, and I maintain hope that more significant advances are on the horizon. I'm banking on it.