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 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. 

Friday, August 29, 2014

Around the Web

{photo credit}
Here's what I found on the web this week. Every week, I hope it will be the cure, but I do believe we are getting closer. Let's just get there faster.

Is This Why Brain Mets Occur? Is This How We Can Stop Them?

"Now Memorial Sloan Kettering researchers have found that a protein called cathepsin S may play a key role in the spread of breast cancer to the brain. A complex interplay between breast cancer cells and certain surrounding cells called macrophages induces both cell types to secrete increased levels of cathepsin S, an enzyme that promotes the cancer cells’ ability to metastasize.

In addition to potentially helping doctors predict which breast cancer patients are at increased risk for brain metastasis, the discovery, published recently in Nature Cell Biology, suggests that cathepsin S could be an important target for new drugs."

Why We Need More Words to Describe Living with Cancer

What words do you use to describe your breast cancer journey? Battling? Thriving? Surviving? Suffering? Treating? All of the above? 

For the most part, I think to each her own when talking about cancer and otherwise, but I do think the author here is right: Amy Robach, by virtue of her position as a journalist, has a special responsibility to choose her words more carefully.

Public Service Announcement: Pfizer Initiates Expanded Access Program for Treating Certain Advanced Breast Cancers

"Under its expanded access programs, the U.S. Food and Drug Administration (FDA) works with companies to allow access to investigational therapies to patients with serious or life-threatening illnesses who do not otherwise qualify for participation in a clinical trial and for whom there are no comparable or satisfactory alternate therapies."

This particular drug, palbociclib, is for hormone-positive, HER-2-negative breast cancer patients.

Breast Cancer is Really (at Least) 10 Different Diseases

While it's inspirational to hear, "My aunt had breast cancer 10 years ago and is doing great now!" it probably doesn't have any bearing on how someone else diagnosed with breast cancer today is going to fare. As I keep reminding myself when I see my friends dying -- whose cancer is, on paper, very similar to my own -- every disease blueprint is unique.

How Much is a Cancer Drug Worth? The UK is Reevaluating.

"Big manufacturers set to be affected by the changes include Roche, which came under fire this month from Nice [National Institute for Health and Care Excellence] for failing to cut the price of Kadcyla. The £90,000 per course drug is for women with advanced breast cancer. Nice rejected the drug as failing to offer value for money at that price."

I am eternally grateful for the quality of my health insurance.