Time to Let Your Cancer Flag Fly

[Moondoggie22]

Okay gang, here it is - the latest marathon post. I do apologize about this one's length, but every time I try to edit it down, I just add more. So now I'm posting it as-is so I don't do any more adding. It's just that I've suddenly found a subject to be passionate about, along with a Grand Idea or two, and that makes me jabber quite a bit. So this one's actually a marathon with a purpose. I really hope everyone can make it through to the end of this one, 'cause I have points and ideas scattered everywhere to keep you on your toes. And if you can't make it through in one sitting, please mark where you are and come back to finish. I'm hoping all of these little words will be worth it by the time you get to the end. A small warning up front - I've found a thing to be passionate about, and occasionally that makes my language a little strong. If you have gentle eyes, be forewarned that they might be shocked in a couple of places.

Where This Came From

First off, I'm big on giving credit where credit is due. These squirrels inside my head wouldn't have been spinning so crazily if it weren't for Sherrill's "When to Tell" post. That post nudged them out of their slumber a bit, but it was one comment by Anne (ag2006) that woke them up all the way and got 'em being productive for once:

When I was bald during my SCT, people looked at me differently and avoided me. Cancer is still seen as a contagious, untreatable disease by many ignorant people.

Those two sentences kicked off a flurry of thoughts, ideas and emotions in my head and are largely responsible for everything you're about to read here. And I'm hoping that for once I can stay on track enough that I'll get more readers than skimmers

First off, a little about me. Most of you know me as one of the funny guys around here who occasionally actually adds a nugget of knowledge here and there. There's one thing I might not have mentioned and might not be readily apparent from my online persona: I am viciously protective of my family.

I have many families, and I am the same way about all of them. Every hockey team I've been on has become my family, and I've taken many a major penalty when I've felt someone was mistreating MY family. I seem like a nice sweet ordinary guy, but I can turn all Big Mama Badger at the drop of a hat when it comes to me and mine.

So I have my core family, my in-lawed family, my hockey family, and my biggest family of all: my cancer family. All of you guys here are like my brothers and sisters, my moms and dads, my sons and daughters. Those NHL'ers a link away? They may be nieces and nephews or cousins, but they're still family. All of those other cancer folks may be extended family, that grand-uncle you never see, the fourth cousins at the reunion, but they're my family too. When I hear about something happening to one of us, I'm ready to fight. I've always been an "all for one" type of person, and I firmly believe that the things that affect one of us affect all of us.

So back to the topic at hand: me being pissed off at the injustices brought upon our family. That comment up there that Anne made really got my blood boiling. Not at her for saying it or anything like that, but that we have family out there who are being treated like they have the Pox. Like they're second-class citizens who should be swept under the rug and forgotten about.

This cannot stand.

Her experience also reminded me of a post of Sarah's a little while back of one of her bald experiences at a restaurant:

Tonight my partner and I went out to dinner at a really busy, hectic restaurant, and I got so many unfriendly stares it was unsettling. I understand it from kids -- but adults? I remember last year, when I was 3 months (halfway) through my first chemo, my partner and I went to St. Maarten for nine heavenly days -- at the B&B at which we were staying there was an older American woman who said to her daughters as I passed, "Why doesn't she cover that UP?" in such an angry voice....I was just flabbergasted! I saw the same coldness on the faces of the women who stared at me tonight. They didn't even respond to my smiles! (I know it can be disconcerting to see a bald woman, but when she smiles at you to be friendly and put you at ease, you're supposed to try to smile back, I think.) I just don't get it.

I remembered how angry and heartbroken I was to read that then, and even moreso now. Then I scrolled down through the rest of the post.

Susy (susy6655):

I know I should be proud because I am fighting Cancer.....but people that see me and dont know me dont know that....they only see me.

Kristna:

I went through this same thing at Staples one day. I decided to go "wigless" to a doctor's appt. one day and afterward we had to stop at Staples. It honestly never even crossed my mind that people would make a big deal out of it! Well, lets just say that they needed to hire a new employee that goes around and gets everyone’s chins off the floor. Everyone in that damn store stared at me and pointed with their mouths dropped. This was a tragic experience for me. I was so upset. I really do not know why people are so cruel.

Granted, there are a few of us who are lucky enough to not have to deal with this as often, like one of Mary's positive bald experiences:

I went bald throughout chemo and had nothing but positive reactions. Women would stop me in the grocery store, at my daughter's volleyball practice, in the restroom at a restaurant and tell me "I used to have that same haircut." The survivor's who reached out to me were a constant source of inspiration.

But for every story like Mary's or mine out there, there are a hundred like Sarah's, Susy's and Kristna's.

This cannot stand.

This will not stand.

What Do We Do?

But unfortunately, I'm just one person. As much as I want to rush to the aid of all of my cancer family and beat the ignorant into submission, I can't. One person can't be everywhere at once, no matter how much he wants to be. I mean, I can be supportive of my family, and I do my best at it, and I can always add my true feelings for my family, like a lot of the rest of us do so well:

John:

You're beautiful - they're idiots. Their comments and stares say nothing about you, but loads about them.

But sometimes it takes more than that. Sometimes, the very fact that you're having to deal with this crap on your own makes me feel like there's nothing I can do out here in this little computer world of pipes. But then I realized that there is one thing one person can do. That person can have an idea.

Right now, as of the end of 2006, Lance Armstrong is the Face of Cancer. He has been an excellent spokesman for us and has done a lot of good through his outspokenness, his good deeds and his Livestrong Foundation. There's only one problem with his efforts: he's Lance Armstrong.

Now, Lance has been doing an admirable job of bringing the regular, average Joes and Janes like us into the cancer limelight, trying to remind folks that there are a lot of survivors out there. Unfortunately, Lance's star is a little too bright. People see him and they happen to notice that he's holding a little bald kid or is surrounded by the bald and crew-cutted, and while they pick up that these folks have had cancer and have either beaten it or are in the process of beating it, they don't think deeply enough about it. They don't make the connection.

See, it works like this: A friend of mine hears I'm diagnosed with cancer. That friend is immediately shocked and horrified, as he thinks cancer is a death sentence. Then that friend thinks of Lance. Yeah, Lance beat it! But wait a minute... Lance also won a whole hell of a lot of Tour de Frances. Maybe there's something in Lance that's not in the rest of us. Maybe that thing that makes him so strong is what made him beat This Thing.

Aside from our friends and family, I'm sure you've all thought this at some point in your treatments. "Yeah, Lance made it, but... he's Lance."

So this is where the rest of us come in. All of us Average Joes and Average Janes. It's time to get grassroots on this bitch.

Are You Talking to Me?

Now, before I make my official Call to Arms here, let me make another clarification. This is a Call to Arms for the loudmouths. For the ones with a broad support base. For the ones who are ready to knock someone down if they look at them a little funny.

I know we have a lot of family out there who don't have support. They're surrounded by an ignorant population and they can't "out" their cancer for fear of the reactions or scorn of others. While the situation they're in isn't okay, their reaction is. If you're not comfortable being vocal or if you're in an environment where you can't be, that's perfectly fine. Right now, I'm trying to rile up my fellow loudmouths so you don't have to tell people about your cancer.

To take one of Sarah's analogies, having cancer is a little like being gay in that regard. Some of us are out here living in the San Franciscos of the cancer world and can say what we want about our cancer. Say it loud, I'm sick and proud!

Others of our family are stuck in the rural farm towns of the cancer world, where they can't talk about their disease without having a big red "C" painted on them.

But sticking with the gay analogy for a moment, think about how much more accepted being gay is in a broader swath of the overall community than it used to be. Yes, they still have a huge hill to climb, but they're much more accepted than ten or fifteen years ago.

How did this happen? There are numerous reasons and folks involved, but I feel that a large portion of the reason is simple. The small group of vocal members got pissed off and became very vocal. As they became louder, they joined with other vocal members. The voices grew louder and louder, and they continue to pick up speed.

So for my brothers and sisters being cancer-closeted by an oppression of ignorant folk around you, sit tight. I've got a megaphone and a soap box, and I'm going to do my damnedest to come to your rescue.

A Call to Arms

This section is for my fellow loudmouths. Everyone can read along, but if you're uncomfortable thinking about doing anything, then don't do it. My intention with my idea is to make all of our lives easier, so do what feels right for you in your particular circumstance.

Brothers and sisters in cancer, either you've had to deal with the ignorant around you, or you've just gotten good and pissed off reading about the folks who are having to deal with it. This same kind of ignorance, misinformation and out and out stupidity lurks everywhere, though. It's time to fight. And what will we use as weapons in this fight?

Words.

<ul type="square">[*]We're going to tell everyone within earshot about our cancer. [*]We're going to tell them that we're going through treatment X because cancer's nothing to be afraid of. [*]We're going to tell them that we're not putting on a brave face for everyone, because cancer has been beaten, cancer can be beaten, and our cancer will be beaten.[*]We're going to tell them that cancer's nothing to be afraid of, especially if you don't have it.[*]We're going to tell them that we are normal, average people and we're out there beating this thing.[*]We're going to tell them that we fucking beat cancer and if it rears its ugly-ass head again, we'll beat it down again.[*]We are going to bore people to tears about the cancer journey, but we'll tell them anyway because they need to know.[*]If we find out that one of our family is living somewhere that is chock-full of ignorant folks, running scared from anyone that has cancer like they're going to be the next to get it, then we're all gonna get on a bus, unload there and sing fucking Kumbaya 'til our voices are hoarse.[/list]
If we can do any of this, as often as possible to as many people as possible, we might just get lucky. There might be that one person out of the hundreds and thousands you talk to who finally gets it. That one person, who when he finds out his sister has been diagnosed with cancer, thinks to himself "You know, that guy Brian that I worked with had cancer and he beat it. And he looks like a normal, healthy person now. He's no superhero or amazing athelete - he's a frickin' computer geek!"

Do we have to live constantly in the past, always keeping our cancer experience in the forefront of our minds? No, we don't. As long as it comes to mind any time an "in" occurs. Whether it's someone you know who's just been diagnosed, some random comment about cancer in the breakroom, or some asshole next to you making fun of "that bald chick" you just passed by.

That's the one you save both barrels for.

As great as Lance has been for us, we need more and more average folk to talk to the people around them. We need to cement in their brains the notion that there's nothing special about a cancer survivor. Because once you start to believe that someone only beat cancer because they were stronger or had some special quality, that can only mean one thing: the people we've lost to this disease weren't strong and didn't have that special something.

And that's an idea that just pisses me off even more.

What's In It For Us?

So what do we get, what can we get out of being more vocal? I see a few possible effects.

The first, and one I hope most for, is that the folks out there who feel like they have to keep this cancer thing to themselves will see some eventual benefit. Not that they'll suddenly decide to run around and tell everyone about their cancer - some people are more private than that. What I'm hoping is we can make the environment around that private person such that they don't have to feel ashamed that they have cancer. That they're keeping their cancer to themselves because they want to, not because they have to. Above everything, I want all of the members of our family to feel no shame in their diagnosis and be able to sit back and honestly accept the amazing thing they've achieved.

I suspect we could have another effect. Let's say I think cancer is an automatic death sentence. If I think the doctors and researchers haven't come up with a way for someone to beat cancer, then I'm just throwing good money after bad if I make a donation. Better to send that money somewhere it could do more good. Donate to a cause that's closer to their goals so my money actually has an effect.

But if I've found out that Person X had cancer and beaten it, that's something different. And look at him - he looks just as healthy, if not more, than I do! But wait a minute. My sister has this other cancer and she's not doing as well. Maybe since Patient X beat his cancer, the researchers are close to finding a way to help my cancer beat hers. Maybe my cancer donation won't be just throwing my money in a bottomless pit! Maybe if they had just a little more funding, my sister's life would be helped out like Patient X's!

The Reality Of It All

Look, I know people are losing battles with this stupid disease all the time. I can be as realistic as the next raving lunatic. But that's part of my point. I feel it's my duty as a survivor to make sure people know it doesn't have to be that way. I want people who have just been diagnosed to have hope and see what can happen when you hang on and make it through to the other side. I want someone who's having a bad time of it to see me and get jealous or angry enough to turn around to their doctors and say "WHY is this happening to me? Look at how easy HE had it!" And then we can put even more pressure on the medical establishment to fucking get something done.

I know we have a lot of brave family members out there who aren't winning their battles. Our very own Anne-Marie is in a constant struggle with her Hodge to just eke out some more time with her friends and loved ones. And I want every one of her friends and loved ones to get as pissed off as they should be. I want them to grab every doctor they see by their fucking collars and drag them over to me, yelling "IF THEY FOUND A WAY TO GET THIS GUY THROUGH IT, WHERE IN THE FUCK IS HER CURE?"

Anne-Marie, I just love ya to pieces, and what you're going through just isn't right. You're another person who's driving me through my thoughts right now, just because of all that you're going through and all you've been through. But admiring you isn't going to make you better. Admiring time is over for me - it's doin' time.

If we can get the right people educated and the right people pissed off, we'll get more money and more brains funneled to all of these cancers and we can get more survivors like me. Granted, I didn't have a total joyride to get to the point I'm at today, but come on. I didn't have brain cancer. I didn't have colon cancer. But that's kind of my point - I want us to get those other cancers down to our Hodgkin's level. And then I want all of our treatments to get even easier and faster. I want a fucking cure.

I don't want to dim or sully the memory of those who have passed before us, as their battles are a part of what made our victories possible. We survivors are being held aloft by the giants who preceded us, and people need to know this too. They need to know that average people can beat this thing and they need to know that some average people aren't. And they need to know that this isn't right.

And that's one more thing that cannot stand.

Walking the Walk

So now I've gone and blathered on for a bit and hopefully ruffled all of the right feathers. We all know I can talk the talk, so now comes the walking time. I'm one of those people who have these grandiose notions and ideas who dream a little too big and too often to get anything real done. Fortunately, I have Barb on my team, and she can ground me. So I'm going to try to make my difference, and I'm going to try to start small.

I've been thinking about my website. Now that I've finally made cancer my bitch, where should I go with the site? I read the bad experiences of others out there surrounded by the ignorant, and then I start to go through my CiMB emails. People who have been recently diagnosed. People who were scared and alone and in front of a computer. People who found my site. People who, through my site, found all of yours. People who saw that there are others fighting this thing along with them. People who are winning. People who are fighting. People who are inspiring. People who are just like them: stuck with something they didn't ask for and doing the best they can to get rid of it.

These people's emails make me tear up just thinking about them. You can almost sense their relief that they've found the rest of us. That finally, they're not alone.

Sometimes, it's easy to forget what we're doing here in this forum. We get caught up in asking about our problems or helping others with theirs and we don't step back and realize the big picture. We are inspiration. Every single one of you inspires me, and if you think about it, you'll probably realize that everyone here is inspiring you as well. And aside from us who are posting, there are all of those lurkers and those new folks being added from day to day. You are all inspiration for those people as well.

So I look through these emails, I look through our forum, I look at my web site. I realize it's time to get off my ass and do something already.

This first thing is a big accomplishment for me and there's not a chance I would've been able to get it underway without Barb to both push me and throttle my grandiose goals to keep me realistic enough to go through with it. And now that I've touched on so many emotions, I realize it sounds really stupid at first, but here it goes.

I'm finally making T-Shirts.

And no, this wasn't all just a huge marketing ploy on my part. Allow me to explain why you've just read everything you read. Everyone has their reasons for doing things, and I have mine. Actually, I have two reasons.

Reason 1 (and the most important)

It gives us an opportunity to talk about the cancer and educate people about what we went through.

One thing I've learned is that when you walk around with "Cancer is My Bitch" on your chest, you wind up answering a lot of questions. This means that even when you're no longer an obvious cancer patient, you can still get the word out. This applies both to the "normals" and to our fellow patients. People get to see what a cancer survivor looks like, up close and personal. And they get to see that the survivor looks just like them. To paraphrase Walt Kelly: "We have met the survivor, and he is us."

That's my biggest goal with these shirts, and why I've been trying hard to find a really cheap way to do them well. To try to get this Grand Idea spread out there in the offline world. This notion, this meme. Just get the word out that people don't have to be afraid. And that when you make it through, you're the baddest of badasses.

I have two dreams. One is the Grand Dream. I would love to see the day when I can find some huge foundation to underwrite all of the t-shirts made so that every new cancer patient gets one for free. So they know on day one that they're strong enough for the battle ahead and have the appropriate armor to make it through. I dream of a national "Cancer is My Bitch" day, when all of us survivors and current battlers all get to wear the shirt wherever we work or live, just so everyone sees that we're everywhere. And so the newbies can see they're not alone.

My other dream is the Realistic Dream. In that dream, one person buys one of my t-shirts and wears it. And one other person asks them about it. And that person walks away a little more informed, a little less afraid. If I had even that small effect, I could die a happy man with 49 unused t-shirts in my casket.

But I still feel that Grand Dream in my bones. Like, for once I know I can make a difference of some kind. Like that unspecific feeling of Potential Greatness finally has a real and attainable outlet. Like this is My Path. A t-shirt sounds kind of lame to base a life's passion around and expect to change the world. But so do free hugs. Or a pink ribbon. Or a yellow wristband. Or a clown selling hamburgers.

Now, mind you, Iam far from a glory hound. I don't want this to be big for me, I want it to be big for all of us and for those who come after us.

Reason 2

More hope.

Looking through my emails, I see a recurring theme. Fellow Hodgers who are relieved not only that they found me, but that I had links for them to find others. So it's time for an expansion. I'll be making lots of changes and updates to my site in the next couple of weeks, but the biggest one will be in becoming more general. I'm going to reach out to the survivors of other cancers who are also posting their experiences online. If someone happens to stumble into my site, I want them to be able to find someone else with their cancer, no matter what that cancer is.

I'll still keep my Hodgkin's Army at the top of the list, of course. Hodgkin's is what I know, and Hodgkin's is the cancer I have the most self-interest in eradicating. And you know how you love everyone in your family, but you do harbor special love for certain favorites? Well, that's you guys. But I think it's time to ease up on the Army's disease specifics and start representing all of our family who are beating this thing.

So now comes my third dream. In this dream, someone is diagnosed with Cancer X. They're scared and alone. They see a t-shirt at the clinic that says "Cancer is My Bitch" and they google the phrase to see what the deal is. They find my site and lo and behold, there's a link to someone else who has Cancer X. And another person. And another. And look at all of these people who've beaten Cancer X!

I want all cancer patients to be able to find the warmth, love and inspiration that these few lucky Hodgers have found by finding all of you.

Money Money Money

The one thing that's kept me from finally making up "Cancer is My Bitch" t-shirts for everyone is the whole price thing. First off, anyone trying to make money of this disease disgusts me, and I hope really bad things happen to them. I've wanted to find a way to make a really nice shirt that I could sell to everyone for what it cost, no more, no less. That sounds easy enough, until you start to see the prices that quality T-shirts can cost to make. But then, providence stepped in.

You see, I work for a promotional products company. What's one of our major products for people? T-shirts. And guess who gets an employee discount. So now I'll be able to have professional t-shirts that I can offer to people for dirt-cheap prices. Barb's keeping my lofty dreams in check, so we're starting with 50 and seeing just how big we can make my dream become.

So just so everyone can see where I'm standing with all of this and what I'll be getting out of it, here are the numbers. Keep in mind that I'm still in negotiations with my company to see if I can get the prices lower and such, so I can't be specific just yet. At our current price point, let's just say I was stunned in a good way.

<ul type="square">[*] Whatever it costs to make and ship the shirts, that's what they will be sold for. No administration fees, no "X amount will be donated to Y", no handling charges. In fact, depending on where the price point winds up, I'll probably wind up losing a little money with each one, just to make the final number all even and pretty. I don't care, as long as the idea is getting out there. [*] I won't be donating any proceeds to charity for three reasons. First, that's one paperwork headache I'm not ready to take on. I've beaten cancer, but the IRS is bigger and uglier than most of the cancers out there. Second, I want these shirts to be as cheap as possible. The cheaper they are, the more chance they will get out in the world and get the idea spread. The more chance they will actually help someone somewhere. Last, cancer is a personal disease. If I'm donating my own money, I want to make sure it goes toward eradicating Hodgkin's Disease. Someone with pancreatic cancer will want their money to go to eradicating pancreatic cancer. That led me to my next big idea.[*] In addition to being stated up front on the website, my other idea will be included with each t-shirt. That idea is this. Big donations to big foundations make a difference. Often little donations don't. But they can make a big difference to small foundations. You have just paid $___ for this t-shirt. As you can see, this is a shirt you could've easily paid $25 or more in a store. Therefore, I'm imposing upon you this obligation. Pretend like this shirt does cost $30. You take $30 out of your bank account. You send me the $___ for the shirt, and the rest of it you send to a foundation researching your specific cancer. There are a lot of small organizations out there working hard on finding cures for all kinds of cancer, and they can use this small donation a lot more than one of the big general cancer foundations can. In fact, feel free to pretend like you bought ten $30 shirts every time you buy one from me, and you'll have even more money to give to a place that really needs it.[*] No advertising on any of my sites, ever. I'm not normally one to use the word "never," but in this case I will: I will never have advertising on my site or any of my sites it links to. I may have a section devoted to the small foundations that could use donations or upcoming cancer events, but nothing that will actually bring money to me. Again, I find profiting off of this disease to be a despicable thing and will have no part of it.[*] Unless they do something amazing, like give me all of the t-shirts for free, I won't be mentioning my employer's name anywhere either. As much as I don't want people to get the wrong idea about why I'm doing this, I also don't want them to think this is all just some corporate marketing strategy to get my boss' name out there.[*] I have one ulterior motive for all of this: it's the one small way I can think of to make the lives of other cancer patients easier. If I can make them feel less alone, if I can help them educate the people around them, if I can just make one person's life be just a little bit better, I will have increased my good deed fund enough to keep this project going.[/list]
So there you have it. A call to arms, a couple of ideas and a t-shirt, all in 70,000 words or less. Like I said somewhere in all of that, my own personal part of this Call to Arms is still being worked on. My point person at work is going to be at a trade show next week, so I won't be able to make my big full court press until the week after next. But it's coming, and I feel like I've finally found something I can follow through on. When you find your life's passion, it can be an amazing and slightly scary thing. I've done a lot of thinking and pondering the past week or so, and a lot of babbling to the folks around me. But we're all going to make sure I get this going for all of us. If I'm wrong in thinking a rallying point is needed, then I'll just have fifty more shirts for my collection and an embarrassing story to share at parties.

But as much as I wish I were, I don't think I'm wrong in all of my assumptions. I think we still have places out there where the patients need to hear from us. They need our hope. They need our inspiration. They need our voices.

So, my fellow loudmouths, it's time for you to take these ideas of mine and run. I'm telling everyone I run into about my cancer and my battle and I'm making some stupid t-shirts on a stupid website. What are you going to do? Go write that book. Get on that talk show. Talk to those neighbors. Those co-workers. Those family members.

Spread the word!

Spread the inspiration!

Get up on your fucking ROOFTOPS AND LET ME HEAR IT!

Say it loud: I'M SICK AND PROUD!

[Val1562]

Insprational, I'm feeling slightly breathless at the end of your post, with a big smile on my face.
I was never brave to go outside of my garden bald and beautiful, now I wish I had. I'm someone who confronts issues, a bit of a plain speaker, and regret I didn't do more. I did once have someone question me about parking in the staff carpark at the hospital where I was treated, I was obviously bald with no eyelashes etc, but it made my blood boil, both as a patient and as a nurse newly back to work to face this petty questioning, and made me wonder a) if a patient why should I pay for parking in other part , b) why shouldn't I be accepted as a member of staff just because I looked slightly different. I did have a bit of a go at her, now I'm glad I did.
The support I have found through this site has been second to none, I doubt the battle would have been so well supported without it.
I really like the Cancer is my bitch t-shirt idea, but how about Cancer was my bitch for survivors, its talking to survivors that really helped me, life is good.
It's good to get passionate about such things, but when I look at the medical advances over the past few years realise how lucky I was to have Hodge now and not 13 years ago like my friend who died from same as me, but SCT wasn't available to her then. Medical advances continue, and one day I hope there will be a cure for all horrible illnesses, strange as it seems, I felt blessed to have cancer rather than a degenerative illness without possibility of cure.
Val

[MaryIN]

I love you, Brian.

Do you think a "Cancer is my bitch" T-shirt will be okay for casual Fridays at my office? ;-)

[bbyblueiii]

Brian you truly are amazing and inspiring. I support you and this 100,000%. I can't wait to hear more on your idea's and these t-shirts. I know that I will be buying several of them!!!

Keep it up for all the newbies need your words!!

[ryersongirl]

Thanks Brian this is a great post and it really hits home. Yesterday I had one of the most humiliating experiences since I've been dealing with this cancer. I have never been the type to hide things and most of my neighbors know that I've had the hodgkins. Yesterday we were at a get-together in the neighborhood and I was telling some of my neighbors about the possibility of relapse and what the next steps should be (they seemed interested). A while later I overheard one of the ladies say "That cancer is going to get her at the end...it's gonna take her". I felt like somebody had thrown a bucket of cold water on my face. It ruined my night and of course we ended up leaving early. Upon discussion with my mother, the response I got was "You see, I told you not to tell people". I don't see the need to hide this...they'll see me bald sooner or later. I felt like a reject and somehow from now on I will feel like they look at me (and my family) with pity...which is the last thing I want. It's so sad that there are so many ignorant people out there.

[drexel6337]

Brian,

I couldn't have read a better thread to start off the New Year! I fully support your passsionate campaign. Let us all know the details of ordering those t-shirts. (I'll just add it to my order of the "bike riding opera singer video"!)

BRILLIANT!

Happy New Year everyone,
Deirdre

[SweetTea2]

Great idea Brian!! I'm ordering 10 shirts! I'm a quiet soft spoken NHL'er from a link away. I still have a way to get my message across even tho my vocal cords won't let me be as loud as sometimes I'd like to be.

Sharing an experience: At work one day I decided to wear a wig instead of bandana, one of the men said "You look much nicer in that wig, why don't you wear it all the time?" Know what I did? I took the wig off!! and went that was the rest of the shift, so he could see how great I looked bald! I don't know why that remark instantly got to me but it did. I've also been stared at in restaurants (wearing rag on my head). By adult people, they have also avoided me when they see me coming, I did not know it was because they thought they might catch cancer from me!!! All these people have had friends, relatives who have had this, why are they so ignorant? One thing I'm finding is, I don't say I had cancer, I say I had NHL then add the word cancer. Knowing they don't know what NHL (Or Hodgkin) is. At the same time tell them there are a lot of different kinds of cancers. Educate them a little (if thats possible).

Good luck on your mission.

Thanks, & Happy New Year,
Joanna

[pine soul]

Brian I love your enthusiasm and your message.

Cousin Nancy

JoAnna you could have just felt bad about yourself after what your coworker said but you didn't. Way to go! I don't know you but I'm proud of you.

[jam]

"You've heard it on the news... seen it in the malls and on the beaches... now, order your own copy of CANCER PATIENTS GONE WILD!!! Watch Cancer Patients doing NORMAL THINGS in NORMAL PLACES! Watch as our BALDY CAM zooms in on unsuspecting Cancer Patients! Join the fun, join the mayhem! It's CANCER PATIENTS GONE WILD!!!"

Brian, once again, you rule! Great post with great message.

As much as possible, I tried to remain visible throughout all of my treatments. I went to work, church, shopping, etc as much as I felt I could. If someone was crazy enough to ask me about my cancer or treatments, I talked their ears off. What I've found is that we all know lots of people with cancer, but are just afraid to talk about it (I don't know why!). Yesterday, in a conversation with my daughter, I came to the realization that I know more people who have had cancer than pneumonia. Think about that one for a moment!

I've also noticed that I'm the "cancer guy". If someone at work or church has a question about cancer, has a friend who's just been diagnosed, or themselves have just been dagnosed, I get a call. It's not that I'm some big know-it-all, it's just that I'm someone they know who is not afraid to talk about it at all. And it's just because I didn't hide my cancer. The only thing I did was remain visible and keep on being me.

Just yesterday, a good friend at church told me that his 18-year-old nephew was just diagnosed with the Hodge. He looked like the wind had been knocked from his sails. I reminded him that he watched me go through the whole thing with grace, dignity, and fire power (and I'm not even close to 18 any more!!). Hell, I even had fun with it! He was smiling again after our conversation. I hope I gave him... hope. If that's all my cancer did was put someone (me) visible and vocal in the world about this nasty disease so that others can learn a bit about it, I'm glad to be the one to carry it.

Ok, I'm not sure where I'm going with this, except to say: Right on, Brian! Cancer IS our bitch, not the other way around. I think most people are sincerely curious and would love to know more. I'll be glad to tell them. A few, unfortunately, are just idiots. I'll be glad to tell them a thing or two as well.

Count me in on the crusade and a t-shirt!

[LAULAUSMAMMA]

Wow - exhausting and passionate post Brian. I will tell Lauren about your "Cancer is my bitch" shirt and see if she'd like one. She is kind of private about her cancer - which is easy since she looks so well - I'm the vocal one since I'm a proud mamma to a brave 18 yr old. I would appreciate your thoughts on WHAT the statement says/means to you. They would be great shirts to wear when we do the Relay For Life in June. What colors will you use?