It’s Personal, and One Day Is Not Enough

Today is Metastatic Breast Cancer Awareness Day, the one day in this month of pernicious pinkification set aside to acknowledge the Elephant in the Pink Room. I don’t know about anyone else, but I’m aware of MBC every damn day of the year…

Because I have this list…

Five years ago, shortly after I was diagnosed, I found my way to an online peer-support forum for people with breast cancer. It’s no exaggeration to say that it saved my sanity. Alone, at home, often in the middle of the night, enduring and trying to recover from treatment, the women and men I met on this forum were always there, sharing bad jokes, outrage, anxiety, as well as affection, cogent advice, compassion, and generosity. One of those forum-friends was Diane.

This was the autumn of 2008, when the fallout from the U.S. and global financial crisis was crashing down around our ears. I was one of the ‘lucky’ ones, relatively speaking. I had a job with health insurance and disability insurance and paid sick time. A lot of my sisters and brothers on the forum were not so lucky. One of those unlucky forum-friends was Diane. The following tells the tale:

“As we watch politicians & bureaucrats argue about the best way to help home-owners keep their homes and prevent millions more Americans from losing their jobs, some of our friends on the forum are living with the real consequences of the U.S. financial crisis. Diane is one of those friends. While she and her husband have been waiting weeks for word on whether they can refinance their mortgage and prevent foreclosure, Diane’s husband was laid off from his job, just one week before Christmas.”

Some of us decided to try to help. I already had a website (for my photography), so I offered to add a fundraising page with a PayPal link for Diane and her family. The above was taken from that page. Within days, we raised over $1400. The money allowed Diane and her husband to pay their bills for the month, including the mortgage, buy Christmas presents for their young sons, and give them time to find a non-profit group that helped them refinance their home. Her husband was also able to find another job.

Eventually, Diane’s breast cancer returned and metastasized. In February of 2010, Diane died of metastatic breast cancer.

A few years ago, the phrase ‘fearless friend’ was coined. I believe that perhaps my late friend and sister bitch-blogger Rachel may have first mentioned it in a blog post. Someone with a better memory than mine (!) might enlighten me in a comment. In any case, it gained a hashtag and quickly spread among those of us who participate in the #BCSM Monday night Tweetchat. A fearless friend is someone who does not have metastatic breast cancer, but who pledges herself to step up and support her friends who do, however she can. There’s a large subset of us fearless friends who have also been diagnosed with breast cancer ourselves but, so far, manage to stay in the land of NED (No Evidence of Disease). I’m not sure how fearless I truly feel much of the time. But for me, being a #fearlessfriend means being a friend in spite of my fear — fear for my friends with mets, fear for my friends who have recurrences, fear for all of us who’ve had this diagnosis, who could develop mets in the future. In another February, in 2012, Rachel died. A week later, I went to her funeral.

There’s nothing quite like soul-searing loss to amplify your feelings of helplessness and futility. You want to DO something, anything, to keep it from happening again. I knew I could keep blogging — and I did keep blogging — but I wrote in a haze of heartache. I so admire the drive and commitment of many of my friends in our cyber-community whose grief over Rachel’s death helped drive them to push harder for real awareness of MBC. They’ve managed to agitate, advocate, go to conferences, write articles, publish books, start groups, raise money for metastatic breast cancer research, enriching and enlarging our e-community. The circumstances of my own life, however, did not permit me to take on any further commitments. But I still wanted to do something. So I offered my geekitude to METAvivor, one of the organizations Rachel most admired and supported, and launched their blog in April of last year. It didn’t seem like much, but it was something. Blog-Admins-R-Us. Please visit our baby. There’s a great post there today, written by CJ, that we hope will be the first of several this month.

As usual, the run-up to the corporate merchandizing field-day known as Breast Cancer Awareness Month started early. As usual, there have been even more execrable, tacky and tactless fundraising campaigns and pink products than there were last year. Some of them truly beggar belief. One of the most idiotic is ‘No Bra Day,’ which happens to be today. Nice timing, asshats. If the saying, ‘there’s no such thing as bad press’ is true, then NBD was a rousing success, since it raised the ire of many of us bloggers, who were not shy about articulating our collective disgust in the blogosphere. My friend the Feisty Blue Gecko summed it up for many of us. Personally, if I go without a bra in public today, I plan to clip my prosthesis on the outside of my shirt. That ought to raise some awareness.

Another friend, AnneMarie, who advocates, agitates, tirelessly kicks butt and blogs at Chemobrain, stumbled upon yet another astonishing fundraising notice this year. I didn’t really want to include the jpg, but you probably wouldn’t believe me unless I showed it to you.

I don’t even know what to say about this myself. What’s the message here? Breast cancer might kill you, but at least you can go out with a smile on your face? Yeah, right. It’s times like this when I wish I were better at channeling Rachel, who would no doubt come up with some apposite snark.

Meanwhile, less than two weeks ago, on September 30th, there was another funeral. It was live-streamed from England. It had been arranged by the long-time partner of another woman I’ve known for five years, whom I also met on the peer-support forum, and later, kept in touch with on Facebook. Her name was Jayne. She was a gentle, unfailingly kind, completely dear human being. Her breast cancer recurred, then metastasized, and finally took her life.

Just yesterday, there was a funeral for Angie Suttles. For fifteen years, she endured breast cancer, reached out to countless individuals and groups, shared her time and her story, and worked as a regional leader for Livestrong. She was known to many of us online, through social media and through her blog. Her son Caleb was kind enough to keep us informed, allow us to participate in a video he created with our messages, and arrange for the live-stream of her service.

Bloody hell. The longer I participate in our amazing community, the longer my list becomes. Some on the list are recent friends, some are friends I’ve known for years now, some are patients I’ve treated over the years, some have been relatives. There are friends who weren’t on the list when I first knew them, but are now. Friends who have died. Friends who are hanging in there, hoping their current treatment will keep their mets at bay. Friends who keep working, at least some of the time, and friends who have a hard time getting out of bed in the morning. Friends in pain every day. Friends who try their level best not to let metastatic breast cancer subsume their identities. Friends who laugh, make art, write blogs, cause trouble, who advocate, educate, kick major ass. Friends who take care of children, parents, spouses in spite of mets. Friends who have lost mothers, sisters, and other loved ones to mets. Friends I’ve met in person, friends I’ve met in cyberspace. Friends I communicate with daily. Friends I love, adore, admire, learn from, snark with, laugh with, share stupid photos of my cats with. Friends I worry about, cry for, rage for. Friends I don’t want to mourn for.

Am I truly fearless? Not really. But I hope I’m at least a kind and conscious friend, and a decent clinician. I can’t always do much, but I can do that. And I can refuse to let fear rule my head and heart. I can speak out and write and draw and make jokes. I can treat my patients with a fuller knowledge of what they might need. And be grateful for how much my life has been immeasurably enriched by every single person on my list. What’s a little fear compared to that?

This entry was written by Kathi, posted on Sunday, October 13, 2013 at 05:10 pm, filed under Metastastatic Breast Cancer and tagged , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

13 Responses to “It’s Personal, and One Day Is Not Enough”

  1. Oh Kathi, I could feel the raw emotions coming off this post. The list goes on and on, doesn’t it. And the No Bra Day was terribly timed, not that there’s ever a good day for that kind of crap. You write beautifully and are a true friend. I’m a friend who has helped another friend all the way until she died of MBC. It hurt then. It hurts now.

    I don’t know if I ever was a fearless friend. I felt fear, but I helped my dear friend anyway.

    Thanks for a wonderful post.

    Hugs to you,

  2. dear kathi,

    as I read your beautifully written, emotionally raw, and sorrowful words that chronicle so many beloved friends and patients you have lost to MBC, and how painful it has been, i think all of those with mets who are suffering such physical ravages, but also, how very terribly hurtful it must feel to them. i imagine the pain they and their loved ones feel, being so “aware” that they are shunned, that they are considered a blight on the behemoth money machines, and the perky ta-ta ads. races and runs and marathons smothered in pink banners and t-shirts while brothers and sisters are languishing, trying desperately to be heard, trying desperately to LIVE. how in the name of humanity can this be happening?

    kathi, i want you to know that the things you have been so committed to, the things you have had the courage and compassion to give a voice to the suffering in the METS community are making a difference. your incredibly insightful blog, helping launch the METAvivor blog, starting that fund to help diane, the graphic you created – broken promises…take back pinktober – and the tenacity to expose the bad, the ugly, and the hideous like the VIBRATOR???
    ad – it all counts. it counts because we see that in the face of feelings of helplessness and hopelessness, of tremendous sorrow and loss, we are reminded to think of what we CAN do, and not be diminished by what discourages and appalls us. this is how we give life to needed change – inspiring ideas and deeds that bring others into the thoughts and conversations.

    i am so sorry for the losses of people who were so dear to you. i know they would be comforted and honored to have been such a inspiration for many of the causes you have brought to light.

    much love and light to you, my friend, XOXOXOXO

    Karen, TC

  3. You are a Fearless Friend. I am so honored for you and all my other fearless friends I have met on all the social sites. I have been fighting now for 4+ years with MBC and until I met you all I really feel like I have a true support team that “Really Gets It” and I am so grateful! From my heart to you, thank you Fearless Friends”!
    Love from Texas,

  4. It’s frustrating that after 4 years on this journey myself.. voices are still not being heard Kathi. That the deception of the pink fuzz feel good campaign has not been turned on its head.. The main excuse I hear is but everyone recognises pink.. my reply, no you just don’t want to see the reality of a cancer journey for those where it is metastatic. Pink is happy smiley, Yet the cancer journey is very grey..

  5. I am so sorry for the overwhelming journey you have been on, and for the losses in your life and the lives of friends.
    Even more, I am sorry for the stupidity of No Bra Day and I am stunned by the Komen ad.
    You are an amazing woman. Thanks for all you have done, and continue to do.
    Sharing this with friends and on FB.

  6. Hi Kathi,

    Thanks for the poignant post. Like you and so many others, I know about the ever-growing list you speak of too – way too many of us do.

    And yes, that ad you highlighted and the dumb “free the tatas” thing going on of late… that crap just keeps coming.

    I don’t think any of us are without fear, but we all do what we can from where we sit. You, my friend, have done and still do a lot, much more than you probably realize. Without a doubt, you are a kind and conscious friend and way more than just a decent clinician. Of that I am sure.

    Thanks for all you do. Thanks for being a fearless friend. Thanks for being my friend. Thanks for being YOU. xoxo

  7. After the shock of the vibrator ad wore off, I just started to laugh. In the face of such absurdity, there ain’t much else to do!

  8. Kathi, the first patient I took care of when I worked in rad onc had late metastatic disease, and she and I shared the same med onc–and I felt fear when I first read her chart. I don’t know if we can be completely fearless, but we can be present.

    Another woman, someone I deeply cared about, I took care of her from her first local recurrence through her death from metastatic disease, and I’ll always hope I gave her and her husband comfort and a place to vent safely.

    thank you for your post: honest and open and trenchant, and helping us all put our jumble of feelings into coherent words.

    Thank you for coming back to blog.

  9. Too many names on that list… too many, and it breaks my heart. You are most certainly a friend to all those women, even if not fearless. I am in awe of how much you can withstand despite it being so damn hard. ~Catherine

  10. Kathi, Thank you for wrapping your cyber arms around me without hesitation, for your strength and humour and ongoing support. Being the fearless friend that you are has got to be so incredibly exhausting, and yet there you are, every time I look around, there you are. You bring so much comfort, sweetie… I’m crying, gotta go find some Malbec. I love you. xoxo

  11. Love you, too, Carolyn. xoxo

  12. Kathi, it is amazing the ignorance there is about MBC. But looking back, I think I was just as ignorant. And unlike the average person, because of the history of breast cancer in my family, I had actually sought out information about breast cancer. But the information the awareness folks have, that our doctors provide us, is sadly lacking. No one ever let me know IBC existed until I had it. Just check for lumps and get mammograms. And the risks that MBC can develop after you seem cancer free, I’m pretty sure that was either missing or dramatically downplayed, also.
    Most people seem to think MBC is rare or somehow even your own fault, you should have gone to a different doctor or tried a different treatment or taken supplement xyz or lived off of veggie smoothies. Plus, people also do not understand remission isn’t cured. My own husband, who I thought should know better, actually asked after I got the news of NED from the PET scan, “This means you can stop the medicines now, right?” (After we get a cure for cancer maybe we ought to require IQ tests before marriage!)
    I try to ignore the vulgar Pinktober stuff as much as possible. I guess I even come off as a bit of a wet blanket to some people. I don’t avoid it all. My gym is selling cards to let nonmembers come in 10 times, all proceeds going to BC research. Nothing from it goes to the gym. Too bad there isn’t more of that kind of stuff.

  13. Amen, Elizabeth. I often find that small, local fundraising efforts are better & more to the point. The misinformation out there is so disheartening at times. Sorry to day, a friend told me that a well-known breast cancer info/forum site is offering a Tweetchat on 10/30 about ‘how to prevent breast cancer.’ I don’t know the details, but I fear that it will mislead & misinform, and include a lot of info of the ‘blame-the-victim’ sort you mention above — if we only eat/sleep/shit/do the right exercise, we’ll be fine. Yeah, right… Meanwhile, I was fit, slender, hale & hearty when I was diagnosed. So, what did I do wrong? I had breasts, that’s what I did wrong.

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