1.23.2012

1.23.2012

Ugh. Mondays. I've felt like my brain has been in a fog for the better part of the day. Maybe it is because the world got off to a two hour delay today thanks to the freezing drizzle we received in the last day and a half. Or it could be I've just had too many thoughts running through my head with an insufficient amount of time to sort through them all. One that I can't stop thinking about is how to stat your life over after your world is consumed by this disease.

Let's state the obvious; the Big C does not come with any type of handbook. There is no guide, living or in print, that will give you any reassurance about the choices you are making nor is there any type of "how to" on resuming life at any stage of the game you might be in. How do I move forward without having to advertise my business to everyone I come into contact with? How did I get here? Let me preface.

When I received my original Dx in 2008 it was all about survival; keeping my body as mine and not allowing the Big C to invade any more of it then it already had. My world collapsed all around me and I went from being able to plan months in advance to day to day. Then came the news the IV chemo failed, bringing on the stem cell transplant, and then the news that it too had failed. Forget living day to day we were down to hour by hour. I gave up a lot in that time. In my mind I had accepted that this was going to be my life. I would not get to return to school. I would not get to live on my own again. I would never get married and I would never get to have children. My sole purpose in this world was survival and by the grace of God I was going to do it for as long as I could. Then in the blink of an eye everything changed. Again.

CRAD-001. The experimental chemo drug that I now take daily to live. Suddenly, not only do I have hair again but guess what? I get to keep it. Before I knew it, the image in the mirror was someone I recognized. Next thing I know I'm enrolled in graduate school.

I keep running into people who know my story and want to know "how I'm doing". On more then one occasion it has been assumed by folks that I'm either "cured" or in the "r-word" (remission but we don't use that word. EVER.) because I have hair and don't look "sick" as per the definition and image in their mind. How do I explain to folks, not only ones that I know but to people I'm newly acquainted with my situation?

Take dating for example. Lets say I meet a nice guy and we hit it off. It isn't like I can sit him down on the third date and say, "We need to talk because I need to tell you something. Don't' worry it isn't an s.t.d., its only cancer and don't worry, you can't catch it." Forget dating. How about just making new friends. It is like having to hide the elephant in the room inside a small clutch purse; it is the number one priority in your life yet you like you are being forced to pretend that it doesn't exist. Do I need to tell folks? Some yes. Some no. I'd like so say, "Yes I have had cancer since 2008. Yes I'm currently on a chemo drug that my body has responded well to over the last year and so far I've been able to keep my hair. Am I considered to be cured? Nope. I take 1omg of chemo every. single. day." Your normal isn't my normal. It has taken me the better part of a year that when brought up I have to just simply say, "I'm LIVING with cancer". That's right. I said it. LIVING. L-I-V-I-N-G. And I plan to do plenty of it.

I feel like I've emancipated myself! The Big C takes it toll on so many levels but it also allows you to experience compassion and humanity in its purest form. Slowly I'm opening my doors and windows again and letting people in. For so long I've felt the need to keep my circle small because it has been all I could do to keep myself going. I'm learning, albeit the hard way most times, on who to say something to and who not. I've experienced others telling my story to folks (a.k.a prospective employers) without asking me first and having those folks in turn confront me about it. This may be a double standard but here's the deal. I may be open about my situation and willing to chat about it but that doesn't give folks the right share it in all instances but guess what? I can't control it all, people will talk and that is just how the world works.

Lesson #177,171 the Big C has taught me: its o.k. to talk about it. Whether it be me or others doing the talking. Maybe there is a reason why there isn't a printed guide to this journey afterall. Until next time...