Oh The Irony!

You know, the irony  associated with the fact that I have a cancer that could seriously limit my ability to speak is not lost on me!  At first I just laughed and laughed . . .honestly, it's so funny.  Also, it's  a complicated cancer to explain . . .it takes some talking through.  .  . . .and there are no good plastic surgery perks at the end . . .I mean really now, couldn't I have just gotten breast cancer which everyone knows about and understands?  You know . . . . cut 'em off and get me a nice new set?!  Oh no, cancer of the head.  It doesn't even sound right.  (It should be noted though that it's not cancer of the brain . . .this one generally doesn't spread there and for that I am very grateful.)

But later, when I'm a cancer survivor and people ask about the great scar on my neck . . .it's going to be a lot of trouble to explain that I had "head cancer". Most people actually say "head and neck cancer" and if you want to get technical (and everyone in the cancer world does) the official name is Stage IV metastatic squamous cell carcinoma of the head and neck with origin in the______. We don't actually know the part in the blank yet.  It's a big name.  

Fact is, once you throw the "C" word out there it doesn't much matter after that.  It's a club. I'm just a pledge now but the community is amazing and everyone has a story. They tell it to you with out even meaning to. I spoke to a guy yesterday, Kevin,  who I've never met before. Don't actually even know where he lives and couldn't tell you his last name though I have it written down somewhere . . . he works with my friend M.A., he went through this last year and when she spoke to him about it , he just said here's my number . . .tell her to call me. We spoke for a couple of hours I think . . . . he has no idea how much he helped me. Then there's my friend Julie, she's in the club already. Her beautiful son Adam is a neuroblastoma survivor. Her brother Tony is an oncologist in Nashville and  himself a lymphoma survivor. He gave us a long distance consult that really opened our eyes to some questions we want answered as we go forward.  Also, Julie brought me a "cancer kit." It rocks!  But it also sucks that there is someone in my circle of friends who is so intimately associated with this experience that she knows what to put in the damn thing ( the thing I most appreciated was the file folder for all the paperwork!--you have no idea how much paper this disease generates!) 

There is also the guilt . . .because I have some other folks I know in this club and I now know that I didn't do nearly enough  or anywhere near what I should have for them. Before it was me, I thought "I won't call because I don't want to intrude on their family time."  Or, why would one more entry on the website matter  . . . when someone you love is dying (or even if you're just considering the possibility that they might) do you really want a card?  Everything I do seems so small so I won't do it all.  Well let me tell you something, I have been glued to the computer for the last 2 days: every email response, every comment on this blog, every promise to include me on a prayer list, MATTERS.  It's the only thing I really need.  Just call, I may not answer and I may not get around to calling you back for awhile (but really, that's nothing new!) but call anyway, leave a message, comment on the blog. Check in with Jason, I think its harder on him than it is on me.  

So, having said all that: Wendy and Gina . . .I am oh so sorry that I didn't do enough.  I didn't really get that it's just the human contact that gets you through, forgive me.   

That's about it for today. It's my last full day BC--before cancer. Not really of course, because it's there already and it's going to be for quite awhile. That's another conversation that I had with Julie and with Jason, part of what sucks about it the most, is that you can never go back. I would like to wake up again the way I woke up on May 4 . . .not knowing, not dreading, not fearing what comes next.  Not gonna happen, but at least after tomorrow we have a plan. Kevin said that he was back at work 10 weeks after his treatment ended (the side effects from the chemo/radiation combo are actually cumulative so the last couple of weeks of treatment and the 2 months after are the  worst.) So I've taken his calendar and made one of my own . . . Surgery and recovery: 4 weeks, chemo/radiation 6 weeks, post radiation recovery 10 weeks . . . .20 weeks in all, give or take a week or two so we will call it 5 months . . .150 days.  I am posting the calendar  and counting them down . . .we should be at "1" sometime around the end of October . . . just in time to use those cool new scars for Halloween!  I will write again when I'm able, look for a post tomorrow evening from Jason about the surgery!