Dear The Truth 365 and Childhood Cancer Advocates Everywhere…

I am mad at you.

Are you still reading, Childhood Cancer Advocate? If you are, then you’ve given me a tiny iota of hope, that you mean well, and are not just a jerk. Good for you!

I love your demographic, but I hate your messaging. You operate from the false premise that children die of cancer, because people don’t care about them. Are you aware that every time you utter that statement, you make the world a slightly worse place? Especially for the innocent little children that you claim you are fighting for? When you don’t get your way, you stamp your feet and accuse people of not caring about children with cancer. Case in point, the EmpireGoGold Campaign:

Seriously, what the hell is wrong with you?! Did you sleep through “Community Organizing 101”? Do you not understand how difficult it is for tiny people to get things that they want from huge corporations? I was a social worker for several years. Believe me, it’s hard. I had to fight, claw, advocate, protest, make phone calls, attend meetings, and comfort and protect some of the most vulnerable and fragile people that you will ever meet. Guess what else? I had to do it all with a soft voice, and a smile on my face. Nobody wants to deal with an asshole. In fact, very few people will. Especially when it’s a privately owned entity. You stomp around like the world owes you; like The Empire State Building owes you. In truth, they owe you nothing. You didn’t get what you wanted? Try again. Try better. Up the ante. Make yourself more credible. Community organizers have been doing this since the days of Jesus. What is wrong with you?! Did you honestly think that throwing a huge tantrum, spamming the Empire State Building’s Facebook page, and harassing its employees would get you what you wanted?? I know that you requested a lighting partnership through an “organization”, but guess what: to a huge juggernaut like the ESB, the non profit you started to honor your dead child, that has 300 “likes” on Facebook, and a board of directors of 1 (YOU), might as well be an individual. Get it? We’re talking David and Goliath here. Why do you think that St. Jude Hospital was able to parter with them? Am I coming in clear?

I am so mad at you, because you are giving your cause, really ALL causes, a bad name, by coming across to the public like a bunch of belligerent bullies. You are shooting us all in the foot. You are actually assuring yourself LESS funding and LESS support with these antics. For the love of children, you have got to cut this shit out. You have every right to be angry. Your child died a horrible death, and more funding and research is needed to save lives. Cancer is sheer hell. If you’ve familiarized yourself with my blog, you understand that I know this first-hand. Yes, you have every right to be angry, but you need to focus your anger effectively. Otherwise, it does harm, rather than good.

This brings me to my next point: Reason #2 why I am mad at you.

As a cancer survivor, nothing fills me with more despair than when I hear cancer advocacy organizations play the “my cancer is worse than your cancer game”. I will never support an organization that does this, even one that advocates for my type of cancer. Even though every cancer needs an advocacy and fundraising arm, there is no better or worse. Cancer is awful. ALL cancer. Did you know that the most effective way to support cancer research is to donate to broad-based research efforts? That’s because often, when one type of cancer is being researched, new treatments for other types of cancers are discovered. So tell me this: do you really want to keep playing your petty little game? You could, literally, be screwing children out of new treatments. It’s counter-intuitive, I know. My cousin was an immunologist, and told me this. Specifically, he was developing new ways to treat cancers at the cellular level. That would revolutionize treatments for ALL cancers. Get it? Fewer children would die of cancer, if doctors knew how to wipe it out before it turned into tumors. But you’re too busy trying to convince people that children’s’ cancer should get more priority than adult cancers. Stop it! Should I be mad that only children get hospitals that are colorful, cheerful, and full of fun activities to do? Should I take the fact that they get “playrooms” on every floor, and Children’s Miracle Network telethons as proof that people “don’t care” about me? Of course not. That would be preposterous. Do I feel that I would benefit greatly, if my hospital had more of these amenities? Absolutely, and without question. However, I am happy that the medical establishment has recognized that children (all people, really) benefit from them, during an otherwise bleak, drab, depressing, and terrifying time.

Reason #3 why I am mad at you:

You are mean spirited and dismissive of cancer patients. How do you think I feel? I was diagnosed at age 37, far younger than the age of “60”, which you purport is the age that “most” adults get cancer. You also claim that adults get cancer because of unhealthy life choices. I’ll have you know that before diagnosis, I lived a clean life. I’ve never smoked, abused drugs or alcohol, or been overweight. I was genetically predisposed to my cancer. Your claims are erroneous and ignorant. You argue that adults have already gotten to live, so children should get more priority as far as treatment research goes. Do I have to spell out for you why this is just a steady stream of bullshit exiting your mouth? Would you like to come to my “Young Adult” support group, and say that to my friends? They are all between the ages of 25-40, and all are cancer survivors.  One friend has relapsed Non-hodgkins Lymphoma, and needs a bone marrow transplant. Another has metastatic triple negative breast cancer that has spread to her brain. A third survived her Hodgkins Lymphoma, but has permanent neurological damage from radiation. Do you hear what I’m saying to you? Or are you still stuck in your own echo chamber, where “pink” is a four letter word, and we’ve got it SO good, that we are somehow stealing something from your kid? Since when did we become the object of your anger? You must be blissfully unaware of what we’ve been through. You didn’t see me get cut open from stem to sternum 3 times, go through 9 rounds of chemo so toxic, that I could barely lift my head for 9 months, and still deal with cognitive and memory problems as a result of; live for 7 months and 5 days with my intestines on the outside of my body, or ooze every body fluid imaginable, out of every orifice on my body, and a few that were surgically created. And that wasn’t even the half of it. It was agony. I used to wonder whom I had wronged in a past life, to deserve what I was going through. I could count on one hand, the days when I wasn’t in pain or feeling like complete garbage. And the crushing anxiety and terror of having a cancer considered to be “incurable”, and with a 15-20% chance of surviving 5 years? You have no idea what I’ve been through, and I sincerely hope that you never have to find out. Please do me a favor: please continue to campaign aggressively for better funding and more awareness for your kids; but while I’m navigating the choppy waters of my own recovery, and holding the hands of my dying friends, please also leave us the FUCK out of it!

I used to be a supporter of The Truth 365. When I emailed the organization to express my concern, and introduce myself in context, my carefully thought out, multi paragraph letter was met with a terse, cold, 5 word response: “Best of luck to you”. Really? Is that how you talk to a cancer survivor, who is putting herself on the line to talk honestly about her concerns? I thought you guys knew a thing or two about cancer survivors. Your heartlessness is so very ironic.

I am from the Washington, DC area, where The Truth 365 is based. Needless to say, I will never support this organization again, nor any organization or family that associates itself with them; nor any family or organization that participated in the utterly wrongheaded “EmpireGoGold” campaign. As a matter of fact, I have a bad taste in my mouth for the entire childhood cancer awareness crowd at this point, and I know I’m not alone. Maybe I’ll turn my efforts to supporting little children stricken with Spinal Muscular Atrophy. Have you heard of it? If not, educate yourself. It’s not cancer, but it is terminal on diagnosis, and babies with it usually don’t live a year. Would you like to address a roomful of parents who’ve lost a baby to SMA, with your foolish garbage about how kids with cancer are the only kids whose illness should get more treatment research and funding? Or what about if I said to you: “hey, at least your 14 year old got to live. Babies should get priority?” You’d probably tell me to go fuck myself, and you’d be right. But then, try to have a little compassion for people outside of your demographic, particularly sick people. Especially if you are pounding your chest on behalf of children with cancer, while never having had a child with cancer, or cancer yourself. Apparently, there are champions of The Truth 365 who fall into this category, and it makes them seem terribly disingenuous.

Selfishly, I would like there to be new and better treatments for Ovarian Cancer, so that I can live to achieve my dreams. I want to have a career and a family, and be a productive member of my community. I have a lot of living to do. At the same time, I wish those things for my friends, too. For children. For everybody. I hope you’ll join me, because we need you, and you need us.


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