I was just looking at my notes from the Metastatic Breast Cancer Network (MBCN) Conference that I attended last weekend in Baltimore, MD. I was hoping to find something that would lend itself to a coherent, theme-specific post, but instead I find little bits of information, some of them like golden nuggets that I can stash away until MBCN has the conference and power point slides online in about a month.
I wil share some of these nuggets, though, these little bits of information that, for whatever reason, struck me at the time as important enough to write down.
So here goes a disjointed, fragmented post . . . even though it’s all about metastatic breast cancer (MBC). That’s the thread that holds it all together.
One of the speakers talked a little bit about how the Network first was formed because two women, both with MBC, felt isolated and alone in support groups of people with early stage breast cancer. Things like going pink all of October or celebrating the end of treatment “is not possible with metastatic disease.” I know what she means, what the founders meant. I chave totally different conversations with those with early stage breast cancer (BC) than I have with those who have MBC. The ones with MBC seem to intuitively know what I’m going through, what I’m feeling and even thinking. They understand the very real fear of dying, of leaving this earth before I’m ready. They understand the worry I have for my child, my husband, my little family. They know that talking about death doesn’t mean that I’m obsessed with death or that I think I’m going to die soon. They understand that it’s a deep need to understand what will eventually happen to me with this metastatic disease. They understand all of these things because they live with these things themselves.
Approximately 30% of people diagnosed with early stage breast cancer will at some time develop metastatic breast cancer, cancer that has spread to organs other than the breast. Breast cancer, if confined to the breast, doesn’t kill. MBC, however, kills. And there’s very little research done on MBC.
One of the reasons that we also may become, in Whymommy’s words, cancer rebels and pink protesters, is that we can’t be happy and pink during October. We can’t join the throngs of “survivors” if we’re not going to survive this disease. We know we’re different, that we’re what they fear the most. How can we join in when we’re the black sheep of the breast cancer movement, the bad girls of breast cancer?
We can’t. We stand out. People get quiet when we tell them that we have MBC. They don’t, understandably, know what to say, although I think an “I’m sorry” or “I’m sorry to hear that” is always something you can say to people who are struggling not just with breast cancer but with so many other things that happen to people.
We are the 30%. I am part of the 10%, the percentage that was diagnosed with Stage 4 disease from the outset. I guess that makes me one of the REALLY bad girls of breast cancer. And it makes me unpopular with some people, with people who only want to see the happy stuff, with people who are uncomfortable with my diagnosis, with people who just can’t face the fact that I won’t be around someday, that barring a miracle or sudden death from something else, this cancer will take me in a horrible way.
Trust me, it’s not something I like to think about, but I have to. I have to try to prepare my loved ones that someday I won’t be here, I may be in hospice care, they may watch me die. Believe me, I don’t like that image any more than anyone else does, but the difference is that I can’t pretend that it doesn’t exist, I can’t say, “Oh, you’ll beat it,” because MBC is an equal opportunity killer — it takes fighters, optimists, supplement-takers, vegetarians, the religious, etc., just as much as it takes everyone else.
I will die from this. My husband, bless his heart, still says, “I hope not,” even when I try to talk to him about things that are important to me, that I think he’ll need to know about if it gets to the place where he’ll have to raise our son by himself.
*sigh* It’s a hard life. Even so, I love my life and I have an amazing God and I hope and pray for treatments to extend my life for a very long time.
That, and a good medical team, keep me alive for now . . . .
Cross-posted to Just Enjoy Him.
I love you, Judy. Always have, and we met when you were already Stage IV. Thanks for paving the way for me and so many others, so that when we got our diagnoses, we still had hope. Hope not that we would live forever, but the hope you showed us — that life does not end at a Stage IV diagnosis. If you play this thing right, there’s still a lot of living to cram in whatever time we have left.
Have to totally agree with Susan – thanks for everything you write Judy
I’m so glad I found this blog.
Thanks for sharing so honestly, Judy. I think people need to hear it and it is good for you. Your articles are wonderful and informative. Keep up the good work!
Oh, Judy, I could’ve written this post & it’s so maddening & angering that either one of us has to think about these things. I am one of the 10% who was initially diagnosed at Stage IV, and after a year of getting it under control, I found out last week that it spread to my brain. I feel like I’m right back at the initial diagnosis, in the trenches, fighting for every day. Thank you for your words b/c I do feel so alone a lot of times, even with other cancer survivors, because I don’t feel that term applies to me. You keep fighting, and living your life, and I will, too. Huge ((hugs)) to you.
Thanks for this blog. There is a certain understanding that comes with MBC survivors. Hope is scary and fleating. Life is something you fear you can’t get enough of.
Thanks so much, everyone, for you kind words. Love you too, Susan and Jenny. ❤
Hello. I’m the author of In Mommy’s Garden: A Book to Help Explain Cancer to Young Children. Thanks so much for listing our book as one of the resources in your “For Kids” section. I just found this blog and it’s such a great resource for women facing cancer. I posted a link to it today on the In Mommy’s Garden Facebook page, so I hope other women facing cancer will find you and read. God bless and always hope for the best.
I only occasionally read your blog. When I do, I am so impressed.
I do wonder about those non-mothers with cancer, though. Who cares about us.
I am so sorry about my comment. It was really thoughtless – can you delete it?
Anyway, I AM inspired by you and other writers here.
Wishing all the best.
i am – like you appropriately just defined – a “stage 4 from the outset mbc” so i totally relate to what you write here (as I always do when you write)…in italy we’re building some sort of cancer blog network, but i am one the very few among us who have to deal with continous chemo-treatment and all the rest that comes with being always on the real alert. Until now, though, i could never express why the pink october stuff made me feel so uncomfortable, but now you have defined it for me, and made me feel better, like i always do when i feel less lonely. thank you so much