Mad as Hell…maybe

Mad_edited-1I certainly don’t want to scare you, the blog reader, away– but when provoked Untitled-1by someone or something like the American Cancer Society (ACS), I become one of these ladies. Why would I paint myself in this light, on “the internet?” For better or worse, it is very necessary for proper context…

Just think red hair, green eyes (when not inferno red), and a face full of freckles—then you’ve got yours truly.

Let’s go back to 2008: As my mom was going through the torturous process of wig shopping while waiting to start chemo , we kept hearing about how the ACS has a wig voucher program, and that we should check it out. The call between the ACS and my very sick mom with inoperable cancer was going on and on; I actually left the room to grab a snack. In the end, to approve her for the voucher, they (ACS) wanted her (my mom) to send financial records showing the amount of funds in a money market account, consisting of life insurance money from when my dad passed away. I couldn’t believe it, probing of detailed financials for a stinkin’ wig voucher! I couldn’t make this crap up. I was livid, I was disgusted. I told her “no way, you are not to call them or give them anything, we are buying your wig.”

ACS was officially dead to me from that point forward. I wrote my mom’s obituary, designating any memorial funds to St. Jude—not the ACS. I have told many people to not give money to the ACS, this is all predating my joining the childhood cancer community. My school district in quasi-rural Pennsylvania breaks records in the Relay for Life, this will make some of you cringe, but they raised over $100,000 last year alone, but rest assured that not a single penny has come from me!

Fast forward to December 2013: I learned about the ACS decision to pull funding for the nationwide summer camp program, including Camp Can Do in my own backyard. ACS, it is as though you rose from the dead; but you would have been better off playing dead, as I was livid, disgusted once again and this time it is worse—you are messing with the kids. And you are making me think about that wig voucher debacle of 2008, thanks for those memories.

March 2014: I have an audience now, so I did a little venting about my arch nemesis the ACS and posted “C is for Cancer Camp,” even jabbing with a little Beyonce. I was working on finding information about the other cancer camps. In my googling, I came across information on the ACS web-sites, still touting the camps as a reason to donate!   I was livid and so tracked down the Four Square Team Captain Joe Baber, knowing he has some “buddies” at the ACS now. Basically, it was a “who the [bleep] do I contact about this [bleep]?” kind of situation. I got a name, sent an e-mail, and I not only got a prompt reply but also a request for a call for later in the week!?

BlackboardwearHow productive, right? But oh, how ironic, someone from the ACS wants to chat with the scorned Daughter-cologist turned childhood cancer advocate. While I know the whole “sugar goes further than vinegar” mantra, how will I bite my scorpion tongue? I had a few days to prep thyself, so I spent the time doing one thing and one thing only: telling myself to play it cool for the kids, to not lash out no matter what, that sugar goes further than vinegar, sugar goes further than vinegars, sugar goes further than vinegar…

This ACS contact was Rebecca Kirch, Director, Quality of Life and Survivorship, Cancer Control. I actually had no idea what to expect from the call. I certainly was not expecting to be on the call for nearly 2 hours, like we were. We both like to talk—but she did some listening too and was taking notes, as was I. We started off by talking about the camps, then a whole host of other issues. We talked about her strategic plan for pediatric cancer and some specific initiatives she is working on for childhood cancer. We talked about the low number of grant requests that the ACS receives for pediatric cancer research. We talked about her passion for palliative care and I mentioned my passion for research into immunotherapies for childhood cancer. We talked about how disliked the ACS is by the childhood cancer community, and the firestorm that exploded on Facebook because of the gold ribbon used on the  Childhood Cancer report. I talked about my struggles joining the childhood cancer community, as someone who has not personally dealt with childhood cancer. We got into some personal things. About how I lost my mom from a 9-month battle with a rare cancer and how I have 2 young daughters, “who are healthy and hopefully will stay that way”. Rebecca talked about losing her brother from a 9-month battle with lung cancer and how she has 2 sons “who are healthy and hopefully will stay that way”. It was quickly apparent that this is someone that I could relate to on at least some levels and, maybe just maybe, get along with. Each of us used the word “like-minded” several times, and she commented how people like us wind up finding each other. Pinch, pinch–was this really happening? I thought to myself: she seems so passionate about helping the kids, but she is still ACS—that’s too bad. But look at me, who am I to judge? I have made my living, and still do, as a consultant for the pharmaceutical industry. Rebecca is ACS and I am Pharma; however, despite being part of the “evil empire”, we are both very passionate about helping kids with cancer, that is without question despite what are sure to be stark differences between us. Nonetheless, we both see that there are opportunities to make a difference, if we find ways to work in tandem. It is clear to me that there will need to be some agreeing to disagree. In the spirit of doing just that, I would like to dedicate this part of the song “I Won’t Give Up” by Jason Mraz to the childhood cancer community along with to Rebecca Kirch at the ACS—not the entire ACS just yet, just going to start with Rebecca and move out from there:

‘Cause even the stars they burn
Some even fall to the earth
We’ve got a lot to learn
God knows we’re worth it
No, I won’t give up
I don’t wanna be someone who walks away so easily
I’m here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got, yeah, we got a lot at stake
And in the end, you’re still my friend at least we did intend
For us to work we didn’t break, we didn’t burn
We had to learn how to bend without the world caving in
I had to learn what I’ve got, and what I’m not, and who I am

I won’t give up on us
Even if the skies get rough
I’m giving you [the kids!!] all my love [and hard work!!]
I’m still looking up, still looking up.

This is the “Grandma shrine”—photos, cabinet, and knick knacks included. This is our “touch with permission only” area of the house

I would finally like to share this picture with anyone who made it to the end. My younger daughter Ella will never meet grandma, as she was born about 17 months after grandma had passed. But she knows grandma per this shrine in our foyer, and was so very excited to give grandma her lily that she made at school the day before my anticipated ACS call. This is and was a special personal moment, but I think my mom and Ella would be OK with me sharing it here to communicate how badly I want peace coupled with productive dialogue. Please, everyone, let’s start moving immediately toward peaceful communication, so that we can all be more productive for the kids. I am still no ACS fan and am in no way defending the past and present, but having the ACS be either dead to you (like they were to me) or a prime target for pure anger (even when justified—trust me, I do get it) will never help one darn bit toward a better FUTURE. I have not lost a child to cancer and appreciate that there is pain out there that is far deeper than mine, but I trust that we as a community can work this whole mess out.

Author: Laurie O.

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