The space inside
Posted: October 24, 2012 Filed under: breast cancer, cancer fatigue | Tags: #MBCAware, breast cancer awareness month, breast cancer blogs, breast cancer research, metastatic breast cancer, Metavivor, psychological effects of breast cancer 18 CommentsI read a lot about breast cancer and how it affects those it strikes. Sometimes the reading is hard — like when an intrepid blogger dies from metastatic breast cancer — sometimes the reading is sad — like when a blogger pours out her heart on the topic of life and loss — but usually it’s uplifting, restorative, and comforting.
I’ve not done a good job in this space of writing about — and railing against — metastatic breast cancer, the kind that kills. MBC is every pink-ribbon girl’s biggest fear. Once that cancer leaves the breast and travels to points far afield, usually the liver, bones, and/or brain, the game changes completely. No matter what stage one begins the cancer “journey,” once the cancer spreads, it’s stage IV and incurable. Treatable, but not curable.
The stats on MBC are horrifying, both the number of women who are afflicted and the shockingly low percentage of funds allocated for research: 30 percent of women with early-stage breast cancer will develop MBC, and 90 percent of breast cancer deaths result from MBC yet only 2 percent of funds go toward research for it, according to metavivor.org. MBC is the pink elephant in the room. Or the elephant in the pink room, as the latest metavivor campaign calls it. 
I encourage you to click on this link and go to the metavivor website. There are easy ways to get involved and ensure that more funds go toward research for MBC. Each time someone likes metavivor on Facebook, a dollar goes into the research pot. Share the image above on Facebook, add another dollar. Sign up to receive emails from metavivor and add one more Benajamin. Follow metavivor on Twitter, add one more, and mention it on Twitter with the hashtag #MBCAware for one more dollar donated. The money comes from Eisai, a research-based pharmaceutical company. I don’t know how to pronounce its name, but I like what it is doing for oncology research.
I think about MBC a lot. I’ve written about it a lot. Recurrence is the scariest part of the breast cancer “journey,” IMHO, and that’s saying a lot because this “journey” is full of pitfalls, roadblocks, speed bumps, potholes, and unpleasant detours.
Yesterday I read a fantastic post about MBC by Yvonne at Consider the Lillies, and one part really stuck with me. Much of the post resonates, but this part especially, as it perfectly describes the recurrence side of the breast cancer “journey”:
“I am afraid that the cancer that was removed along with my breast, will reappear in my bones or my brain or my liver. That it will sneakily take up residence in a vital organ. So every little headache is a warning bell, every twinge in my left hip is a harbinger of disease. The series of appointments with oncologists, plastic surgeons, breast surgeons is unsettling. Scribbled in a planner, the dates remind me that my life has been forever altered by breast cancer. I suppose I am doing just fine. I’ve even been told I look just like myself, that God would never give me more than I can handle, and admonished to put my “big girl pants on.” The thing is that those tests and scans shocked me once, and I have prepared a little space inside to be shocked once again.”
I pondered this for a long while yesterday, and realized that I too have prepared a little space inside to be shocked once again. It’s one of the many hard truths about the aftermath of cancer. On one hand, surviving such an ordeal provides a zest for life, a desire to gobble up life in big, gulping bites, to live it to the fullest, in whatever form that takes. But on the other hand, it’s hard to live fearlessly and zestfully while waiting for the other shoe to drop. It’s not a question of thinking positively or hoping for the best. It goes beyond having done the homework and made the hard decisions and undergone treatments to slay the beast. One can do all of those things and still lose this game. One can do everything right, yet breast cancer recurs. That’s why we prepare that little space inside.
In her post, Yvonne calls for an online revolution about the realities of breast cancer, especially the metastatic kind. I’m in. Me and that little space inside are all in.
The Pink Underbelly 
Pink, you continue to amaze, confront, and make us uncomfortable with your spot on observations! From my tiny space of my own dis ease, your continued words inspire and challenge. Thank you and keep it coming!
Many thanks, Mr Kramer. I vow to do my best to continue making you uncomfortable.
You go, girl. You’re a force to be reckoned with.
well done girl, well done!
Thank you for this. The attention the MBC community … and METAvivor … are suddenly getting is so encouraging. I have lived with this disease for six years and have been struggling to get MBC attention the entire time … and then it suddenly began! From the BC bloggers, from pharmaceutical companies, from tweeters, and its starting to get into mainstream media. We have far to go, but this is incredibly encouraging. Two facts I’d like to quickly clarify. First, the 90% death are deaths from ALL cancer types. Breast cancer cannot take life unless it metastasizes. Yes, a very few people die due to reactions from treatment, but unlike pancreatic cancer, breast cancer in the breast cannot kill. 100% of breast cancer deaths are due to metastasis. Second, the 2% off research funding is the estimated amount devoted in the US to cancer research for ALL cancer types. MBC is a sub-set of that. ( In the western world, stage IV cancer research stands at a 5% average.)
We all have that little space inside, don’t we? And yet it encourages us to live in the moment & be grateful for the small & large things. I’m particularly grateful today for the dear, articulate bloggers I’ve met in cyberspace along the way. You are certainly one of them. xoxo
I have had the other shoe drop many times, I am still here. However, I still fear that little space inside. You’re correct we need an online revolution.
I’m in with Yvonne, too. Let’s bring on that revolution, now! xo
Amen! I was diagnosed with stage 1, grade 3 last year. It’s like beating a dead horse to get it through some people’s heads that because of the high grade, HER2/neu and estrogen positive cancer I have, it more than likely will return. I absolutely hate the question “are you in remission?”. So therefore, I educate people on the spot that there is no cure for cancer, that at this time,there is only no evidence of disease and check back with me tomorrow, cuz that might change!! The look on their face is priceless. It is hard to want to live life to the fullest, but have this monkey on your back st the same time. Best to you.
being “in” – it isn’t always easy. i was diagnosed with ST IV metastatic BC last december, had chemo, surgery, and radiation, and was recently deemed N.E.D. all through treatment,, through a conscious decision, i stayed away from BC blogs. i was deeply connected with multiple myeloma blogs because my husband was diagnosed with it in 2009, and it was all i could do to keep up with the latest MM research, treatments, et. al. as hugh was going through surgeries, chemo, and then 2 stem cell transplants. also, ah, the irony, i was a hospice nurse for 30 years, and having the burden of knowing too much was something i could cope with as my husband’s advocate; but for myself – not so much. i wanted to live my own story and not project ahead too far into waters already muddied by the two of us having cancer.
but timing was on our side, and we were blessed to both arrive at remission within a few months of each other. i think i was just so damned grateful for the 3 years we had to get our priorities in order, to live in the present, each day, as fully and well as we were able, to trump fear with hope and gratitude – i stuck my toes into the waters of the breast cancer blogosphere, and lo and behold, i was thunder struck by all the issues i had no idea exisited. no idea, about any of it.
especially the lack of awareness and support for those with MBC. like me. now NED. which does not equal CURE. i knew that, but not how profoundly it gets such short shrift both with research funding and awareness. it was SO SCARY to be confronted with it all. and i wanted desperately to celebrate NED. but the outrage and fear i felt made me question whether or not i should expose myself to the feelings i felt, maybe step away, and just cling to the joy i felt with the most successful outcome a MBC patient can achieve.
as i have said in other comment spaces, i thank my lucky stars that good sense prevailed, and that i realized i could still be happy with NED, in fact, i deserved to be happy with NED, but i could also step up to the plate to do what i CAN do; join the Army of Women, the HOW study, the Meta-vivor community, et. al. i was over-the-moon thrilled to thumb my nose at FEAR, much the same way hugh and i learned to do all through this dual ordeal of cancer. and now i am also so thrilled to be able to say, with gusto and resolve, ” I AM IN!” and i am so encouraged by all the recent groundswell of change, just like metacj, above has observed.
thank you, pink, for this post – you rocked it, and i so appreciate your words.
with gratitude and love,
karen, TC
That “little space inside” is becoming very crowded. I’m in there, too. Terrific post!
Fantastic post, and yes, MBC is every pink-ribbon woman’s fear. I know it’s constantly on my mind.
[…] The space inside → […]
Nancy, that space expands and contracts, I suppose to accommodate the fear with which we live.
Thank you so much for sharing the post – it is so hard to get the words right when an entire culture is hell-bent on using much more “positive” language.
I cannot help see but draw so many parallels between growing up in Belfast a million years ago where my mother used to always say (and still does), “sure if we lived in fear, we’d never go out the door.” Of course, we still were afraid, and she was too. I suppose that really is why that little space is there – just in case it “might happen to me.”
xo
Nancy,
Great post. I know about that “space inside” too. I think as women we tend to always prepare for the worst case scenario and there’s no exception here is there? Sharing this one today on Mets Monday. Thank you for writing it.
I’m In! Thank you for writing this, and for clarifying how spaciousness from within itself allows for inclusion from without. I love this. — Gayle Sulik
Thank you for bringing to the world’s attention the simple — and horrible — truth about metastatic breast cancer. It is so important that we not ignore the realities of this disease.
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