Sunday, September 28, 2014

Not Bald Enough

Last week, I stumbled across this article about Joan Lunden daring to appear bald on the cover of People magazine. How incredible of her, I thought. I wish her the absolute best. She has a rare and aggressive form of breast cancer and certainly has a grueling few months ahead. I applaud her for doing what is right for her and not shying away from the iniquities of this disease.

At the end of the article, it noted that Ms. Lunden would be kicking off Breast Cancer Awareness month (that's October, in case you've been living in a cave) with a special on the TODAY show. Specifically, it said: We're kicking off Breast Cancer Awareness Month on Oct. 1 on the TODAY plaza — and Joan wants you to join! If you have undergone treatment that resulted in hair loss, please join us for what we hope will be an empowering moment for women. Email for more information.

So I did. I emailed todaypinkpower and -- after praising Ms. Lunden for her bravery -- gave a brief snippet of my history, that I was a 32-year-old new mom when I was diagnosed with Stage 4 breast cancer, that I've been bald twice, that I'd love to participate in an empowering moment for women (never mind that men get breast cancer, too).

To my surprise, I heard back pretty quickly. My email from todaypinkpower said, in part: We are looking for survivors or women living with cancer to share in our bold and bald empowering moment. Would you be interested in joining Joan on the TODAY Plaza next Wednesday, October 1? Where are you located? Could you make it to our Rockefeller Center Plaza in New York City? She then asked for more information: my age, location, and phone number. Oh, and could I also send a current photo.

In my crazy head, I started wondering how we could get coverage for Quinn if I was going to the TODAY show NEXT WEEK. What would I wear? Could we afford a plane ticket? Would NBC pay for that? I was getting ahead of myself, I knew, but I was caught up with the idea that a platform as huge as TODAY might start to pay attention to stories like mine. At the very least, I thought the photo might be used in a montage of some sort about women who've "undergone treatment that resulted in hair loss." An "empowering moment," if you will.

So I sent in this photo, from earlier this year. I admitted it wasn't the most recent and made a joke about what a camera hog my 3-year-old is. (He's not.)

And then I got another reply email from todaypinkpower. It said: Thank you so much for your response. We are specifically looking for women who can be bold and bald on the plaza for an empowering moment to support Breast Cancer. (emphasis mine)

My heart sank. I'd been bald twice. That wasn't enough? Had I not been through enough shit to merit the "bold" stamp of approval from TODAY? I wasn't welcome because I wasn't BALD? What. The. Everloving. Fuck. I was saddened and livid and frustrated and then humiliated that I'd gotten my hopes up. I checked the message boards for the online support groups I belong to, and I wasn't the only one.

You see, many, many people with metastatic breast cancer do not lose their hair. For many patients, especially if their tumors are fueled by hormones (which is the majority of breast cancer patients), broad spectrum chemo is a last resort used only after bone-strengthening treatments, anti-hormonal agents, and other targeted treatments stop working. None of those other treatments cause hair loss. Neither do newer, targeted chemotherapies like the one I'm on. A lot of us with Stage 4 have our hair.

That doesn't mean we won't die from this disease unless researchers come up with something better soon. We face our mortality every day, live with side effects that range from mildly annoying to debilitating, and an estimated 40,000 people will die of MBC in the U.S. this year, and yet, metastatic breast cancer gets less than FIVE PERCENT of breast cancer research dollars.

I tried to look at it from a producer's point of view. A sea of bald heads would surely make a far greater impact on television than a group of people wearing pink. And of course, this seemed to be more about ratings than actual support or empowerment or -- God forbid -- education. That didn't make me less upset about it.

Maybe this was about solidarity with Joan Lunden. I tried to put myself in her shoes. How would I have felt if a bunch of women with hair came out to support me while I was bald? Oh, wait. I experienced that. It felt fucking amazing.

Fueled by our frustration and heartache and, yes, fury over the responses we were getting because we weren't BALD, a lot of us wrote todaypinkpower back to explain how gutted we felt by her response, by TODAY's approach to October, by the fact that a lot of women are getting left out of the conversation, by the media perpetuation that you must LOOK sick in order to BE sick. Here we go again and the month hasn't even begun yet.

In what I think counts as a teensy tiny victory, on Friday many of us non-bald "metsters" received follow up emails from todaypinkpower letting us know they would still love to have us join after all, and if we were interested, here were the updated details. We just had to wear our pink.

I get it that this is television. I do. And not everyone wants a segment on metastatic disease with their morning coffee. It's not entertaining. I know that. I live it.

As much as I love New York, I won't be able to make it to the Plaza next Wednesday. But I would fly on the next plane out to NYC if they'd talk about stories like mine for even a minute.

Wednesday, September 24, 2014

So Now I Feel Like a Slug

I started Monday morning with a hike up Piestewa Peak, where I climbed 1.2 miles uphill to the summit just in time for sunrise at 6:19 a.m. I'm not normally up quite so early, even on mornings when I hike, but one of our smoke alarms was running low on batteries and alerted us with a persistent beeping that woke Chris and me up at five o'clock. While Chris pulled every one of the devices out of their sockets, I left the house to get some exercise. This photo is from my iPhone. This is where Phoenix outshines DC.

I got home from my hike before Quinn was out of bed, so I even had time to shower and savor my first cup of coffee, all thanks to our faulty smoke-alarm batteries. Then Quinn woke up, I made breakfast, packed his lunch, tried to brush his hair (unsuccessfully), and eventually got him dressed in the correct dinosaur shirt before heading to preschool.

After drop-off, I headed to chemo.

So now I feel like a slug.

I'm nauseous and mopey and feel like my limbs are stuck in buckets of cement, my head in a vice.

This morning, Quinn wanted me to build him a transformer house out of pillows. He was not amused when I asked if I could sleep on one of the walls. He's at school again today, while I'm parked on our couch trying to slog my way through a to-do list that mostly requires making phone calls or filling out disability paperwork, and even that feels like it might need to wait until this fog lifts a little.

On days like yesterday and today, days I still have every three weeks, I'm reminded that although time is so very important, that we never know how much of it we've got, that despite myself I've felt a certain gotta-race-against-the-clock alertness since my diagnosis and I desperately want to enjoy every moment -- I must also take the time to recover in order to get back out there and grab life by the horns or just build a fort with my son. There is no magic way around it. I am knocked out, rolled over, flattened by this fatigue (FLATigue, as my friend Sarah calls it), and my only way through it is patience and time and more patience and a little bit of anti-nausea medication and the knowledge that this, too, shall pass.

So this picture from the top of a mountain is a reminder to me that it's worth it, that on my best days I still have energy for early morning hikes or taking Quinn to swim lessons, that there are better days just around the corner. There are better days ahead.

Friday, September 19, 2014

Around the Web

{photo credit}

An End to Breast Cancer by 2020?

An ambitious and different approach to stopping deaths from this disease. What do you think? Is ending cancer analogous to putting a man on the moon?

Here's One Possible Approach

Let's hear it for antioxidants. I'll be curious to see what clinical trials in actual patients show.

Cancer Survival Rates ARE at an All-Time High

"But these numbers can be somewhat misleading unless they take into account advances in identifying cancers earlier, said Dr. Otis Brawley, chief medical officer of the American Cancer Society.

Survival rates refer to how long a person lives with cancer (including in remission) while mortality rates refer to the death rate, but survival will be longer if the cancer is found earlier, even if the person dies at the same time they would have.

"People don't want to live longer with cancer," Brawley said. "They want to not die with cancer."'

Revolutionizing the Imaging of Metastatic Cancer

With a special shout-out to my alma mater, Johns Hopkins.

Explaining My "Cognitive Deficits," aka Chemobrain

Something about the hippocampus (I can't remember).

Another Possible Vaccine for Breast Cancer?

"CONCLUSION: The E75 vaccine is safe and appears to have clinical efficacy. A phase III trial evaluating the optimal dose and including booster inoculations has been initiated."

Some of the Problems with "Pinktober"

"If you’re not checking your breasts all the time and, god forbid, you end up with one of the most deadly forms of cancer, you could be to blame. In a recent Avon/Pfizer survey, over 50% of respondents believed that those with advanced breast cancers “either did not take the right medicines or preventative measures.” Cancer goes from being a fault in our genes to something we could have controlled."

Monday, September 15, 2014

Are We Terminal?

When my friend Brigid died earlier this month, I found myself thinking a lot about my own mortality. (As these things go.) I've been living with advanced breast cancer for more than three years now, the last ten months in chemo-induced remission. But the average lifespan for someone with my illness is still twenty-six months. I've never thought of myself as terminal, but many people will describe this disease with that word. I began to wonder if I was just being wishful in my thinking.

I reached out to a group I belong to online, a support group for people with metastatic/stage 4 breast cancer to pose this query: Question for you all: how many of you think of yourselves as "terminal"? I don't know if I'm just a naive optimist or blindly mistaken but it's just never been a line of thinking I've been able to go down. After losing a (yet another) friend this week, I'm wondering if I've got blinders on.

I was surprised by the number of responses my post elicited. It received dozens of comments, mostly optimistic and all thought-provoking. I got permission to share a few of their comments here, to share their wisdom and the breadth of their experiences with all of you. These are the women who inspire me on a daily basis. You can see why.

(And if you want to donate to research for metastatic breast cancer, Metavivor is a great place to start.)

[photo credit]

I'll occasionally find myself saying in my head 'I have a terminal disease.' Honestly though, I'm not even sure what that means. I don't feel like I'm dying. My husband took a turn too fast on our motorbike a couple of days ago and we splayed out all over the road - I was definitely a lot closer to death then than I am now! Plus, most of my friends aren't even married yet. We're just starting to have acquaintances with kids. I can't be old enough to be terminal, so I'm just not, at least not right now. - Anonymous

I like to live in a healthy state of denial. I'm pretty sure I know what will kill me but I'm not dead today. So, I know the gravity of my situation but don't allow it to define me. It's a fine balancing act.....  I take it a scan at a time. I live in 3 month increments.... When that's too much, I take things a week at a time. Too much? A day at a time. Still too much? Take it an hour at a time. I get it. This isn't the life I had planned for myself or my family. But it's the life I was given. - Cristin

I've been NED for 7.5 years and still consider myself terminal. I think its because that's how it is "officially" classified. I just accepted it and mourned it and then as the years went by kind of just got on with it. I didn't think I'd make 40 and spent my $ like it too..lmao. I tell people it's terminal also to not minimize it but only when someone really probes. I also subscribe to the everyone is terminal mantra...I've had so many sudden losses and seen "well" people die while I'm still on one I know anything can happen to anybody at anytime. - Teresa

At least I have some idea of how I will die and what to expect (even though it sucks) and I can plan - I have already done my bucket list - and yes - some people will hate me for saying this but I feel lucky at the moment - it has me more in tune with others and what they are going through - it is important not to totally let it be only about YOU - I think more of others now. - Carter

I think of it as living with a dual awareness. I am completely aware that my disease is terminal but I think of myself as living with advanced cancer. Saying that, I do say 'I have terminal breast cancer' because I find for the most part people don't understand how serious it is and that I will never be cancer free. Right now I look well but that doesn't change the fact that I'm 99% sure I'm going to die young of breast cancer. - Anna

Not terminal right now. I'm in complete remission.... I think it makes women "feel" better if their cancer is one pathology over another. Or only in their bones versus their liver. It is like they are putting their hope that they might not die soon in the characteristics of their disease, when that is completely unpredictable. I personally prefer to put my hope in God who alone knows when I am going to die and trust that will happen in His good and perfect timing. - Roberta

I consider myself to be living with a chronic disease. Living with...not dying of cancer. Heart disease actually kills more woman than MBC [metastatic breast cancer]. That being said I'm pretty sure what will take my life...eventually. - Roxanne

I think of myself as living with cancer. When I go into hospice that will probably be when I consider being terminal. - Lori

I do refer to myself as terminal just to make a point to others, but the more drugs that aren't working the more discouraged I become. I do live each day to the fullest and enjoy every moment, but certain days I'm scared shit especially when tumor markers go up, scans show progression, horrifying side effects happen, etc. - MaryAnne

I subscribe to life is terminal, none of us are getting out of here alive. Every day is a blessing and I love life. Until they say sorry we can't do another thing and I agree, I am not terminal. If this is naive so be it! - Janie

I don't mean this in a downer way, more of in a Buddhist way. We're all terminal, dying. We don't know how or when. Life is fragile. Appreciate each moment, each day. - Laura

Never even thought of it as terminal. - Deborah

When I decide that it's time, then the life threatening part will take over, and there will be Hospice for me helping me to still live to the best of my ability until I actually die. I intend on being happy throughout this! - Mary

I'm so sorry about your friend. It is impossible at times to process all the losses..... I try to walk through yet wear them loosely, if that makes sense. To answer your question, no I don't think of myself as terminal at this time. I'm living with metastatic disease. Although it's in my stomach, lymph nodes and bones I'm still on the first course of therapy prescribed. I hope -- but can never be sure -- to have years between now and the time when I am terminal. Like all of you I live with that great uncertainty and most of the time it's ok. - Jody

I just never went down the road of "terminal"..... I always knew I would not die from Stage IV breast Cancer even when I was diagnosed with stage IV! I decided I would fight with everything in me and that started with positive thinking.....blinders - maybe. Whatever works. Six years later I am now NED! The doctors say I have far surpassed their hopes for each of my treatments.......I attribute it to my positive thinking, many prayers and yes my blinders or what I believe each and every one of us lives with to get through each day - a little bit of denial..... Healthy denial. - Serenity

I also don't consider it terminal like most of the ladies above me have commented. Life comes to an end at some point and it might be cancer that ends it or it might be a herd of unicorns stampeding over me. Life's tricky like that. I do try to explain to people that even though I am currently NED that I am not "cured," I will be on herceptin/perjeta for as long as they work and I might still have surgery and radiation coming up. Usually people don't understand which I'm coming to terms with. - Tricia

Friday, September 12, 2014

Around the Web

If I'd read nothing else on the internet this week, it would have been okay. The first article (below) alone would have been enough. Tomorrow is my thirty-sixth birthday, and this felt like a little bit of an early birthday present, even if it is only Phase 2 and still likely has a couple of years before FDA approval, assuming Phase 3 goes as well as this one did. There are a lot of ifs. But so many, many thank you's from the bottom of my heart to the researchers who are letting me celebrate more birthdays.

Vaccine for Her-2 Positive Breast Cancer Shows Promise

"Women with HER2 +3 who were administered trastuzumab [Herceptin] as part of the standard of care prior to receiving the vaccine experienced no cases of cancer recurrence."

Not from The Onion: Bras Don't Cause Breast Cancer

I can't believe someone got funded to study this.

Male Orangutan Dies of Breast Cancer

"Eli was diagnosed with breast cancer in 2011. Zoo veterinarians have monitored him closely since then, said spokeswoman Erica Hansen, in part because cancer is rare in orangutans. He was the only male known to have it, along with two females."

A Perspective on "Battle" Language

I am definitely guilty of personifying cancer. The name of my blog is Booby and the Beast, after all. I've talked about hunting down and eradicating cancer cells. I've compared chemo to smart-bombs. But I don't know that any of what I've done is brave, certainly not heroic. I'm just not sure how else to talk about living with cancer. I thought this post was excellent food for thought. 

"And I don’t want anyone at my funeral saying, “She fought bravely.” Because really, who doesn’t?"

But Speaking of Brave...

A teenager shares his cancer journey in pictures on Instagram.

Friday, September 5, 2014

Around the Web

Here's what I found on the internet this week. All of these advances, and we're still losing too many people to cancer. Please hurry, science.

{photo credit}

Harnessing the Immune System to Stop Melanoma

Yesterday, Merck received fast-track approval for a drug that boosts immune cells to fight melanoma.

"Merck is also studying pembrolizumab against a type of lung cancer, advanced head and neck cancer and late-stage bladder cancer."

Related: An Association Between Melanoma and Breast Cancer Risks

This was on the local news Monday night. It's just one more reason for me to be even more paranoid about every little dot on my skin, especially after my dad's bout with melanoma two years ago. Time to make that annual appointment with my dermatologist.

More Research into How Cancer Metastasizes, And (Maybe) How to Stop It

Unfortunately, drug inhibitors likely won't be available for five to ten years. Seriously, please hurry up, science.

How Much is a Year of Life Worth?

A follow-up from last week's article about the shake-up in what drugs the UK's health system will continue to cover (or not).

Liquid Biopsies -- Coming Soon to a Doctor Near You?

“'By repeating these blood tests regularly, they may give us a very accurate understanding of whether someone is responding to their treatment or not — which is very important for a woman to understand.

'She doesn’t want to be on a treatment that’s not working, or be exposed unnecessarily to side-effects, when she could be switched to a therapy that could be more effective,' Dr Dawson said."

Men Get Breast Cancer, Too -- But Could These Cases Have Been Prevented?

A look into whether the drinking water (or other contamination) at a U.S. Marine Base is causing cancer, and this man's untimely death

Wednesday, September 3, 2014

Negative Space

I am not a morning person, despite how much I love to watch the sun rise. I prefer to work late. I would workout after noon every day if schedules and temperatures allowed. But even by my scale, I woke up feeling especially irritable on Monday this week. My head hurt. I hadn't gotten enough sleep. It was a holiday, so I felt like I should have been relaxed, but I just couldn't find it. I was on edge and testy, and when Quinn asked me to play with him, I practically begged him to let me read to him on the couch instead while I finished my coffee. 

Last week, I'd been chatting online with a friend of mine, Renee, another mom with metastatic breast cancer. She'd run into our friend Brigid at chemo last Tuesday. They have the same oncologist and it wasn't unusual for them to see each other at the infusion center. I wanted to know how Brigid was, how she looked. I was hoping to get out to see her at her next appointment, in two weeks.

Monday afternoon, I got this text from Renee: "My heart is broken." And I knew.

I immediately checked Facebook and the first post in my feed was from Brigid's husband, on her account, letting us all know that she passed away Monday afternoon, after eight years of living with breast cancer. He said he'd never been more proud of anyone in his life. I couldn't help but think about what I hoped Chris would never have to write on my wall.

I've been thinking and thinking about what to say about Brigid here, if anything. We weren't especially close, not in the way that I am with my oldest friends or the people I see every week. But there is an instant understanding when you meet someone who's had the same surgeries you've had, who has suffered the side effects of the drugs you're on, who knows what it's like to be bald more than once, who can commiserate about the never-ending cycle of scans and treatment and hope for a better option. Cancer, in its ugliness and brutality, creates intense bonds. I couldn't not write about Brigid. 

When I was diagnosed, she was one of the first people who gave me hope about what it means to live with metastatic breast cancer. In one of our early conversations, I asked her how she stayed so positive (the girl always had a smile on her face). She answered plainly, "I've never felt sick." I'm sure that changed over the past few months, as her cancer changed course and her treatments became more harsh, but her smile never faded.

I, on the other hand, can hardly bring myself to smile before my second cup of coffee.

{an early meeting with Brigid (center) and our friend Patti}

In her book Tiny Beautiful Things: Advice on Love and Life from Dear Sugar, Cheryl Strayed (of Wild fame) wrote: 
One of the basic principles of every single art form has to do not with what's there--the music, the words, the movement, the dialogue, the paint--but with what isn't. In the visual arts it's called the "negative space"--the blank parts around and between objects, which is, of course, every bit as crucial as the objects themselves. The negative space allows us to see the nonnegative space in all its glory and gloom, its color and mystery and light. What isn't there gives what's there meaning. Imagine that.
In Brigid's absence is a void, a negative space that reminds us of the "color and mystery and light" of the life she led. Of the brilliance that she shone on everyone she met. This isn't a perfect analogy, of course, because we are not better with her gone, but I am better for having known her. She did give what's here meaning. Brigid was small, only 4'11", so maybe it's fitting that words from this book resonated with me when I learned she'd died. Brigid was herself a tiny beautiful thing.