What we do when we have stopped

When I start getting comments asking if I'm okay, it's time to update.

First, yes, I am okay. I am still in limbo with regards to finding an oncologist, having a cursory ultrasound of my internal organs, and undergoing CA-125 testing (status of blood work requisition: lost), but there's been nothing to indicate that I should be concerned about my innards (touch wood) so for the meantime this limbo is merely a hypothetical mosquito rather than a hypothetical broken foot in the world of Things Which Bother Me.

At last update, I mentioned that I was leaving for Rae's wedding. A couple campsites, many hours of driving, too many greasy spoon breakfasts, and one run-in with the Tennessee State Police and their fine narcotics dogs later, I arrived (with BF Margot) one minute after the ceremony began. Did I tell you that this was the first time we met? She was stunning and lovely and friendly and funny and so many other things that there are adjectives missing from the English language to describe her. I felt like we'd already met and it had just been a long time since we'd last seen one another, that's how comfortable it was. In fact, Margot laughed at us for a conversation that went something like this:

Rae: My aunt and uncle who I've never met drove all the way up from Florida for my wedding, isn't that weird? My mom hasn't even seen them for at least five years.

Louise: Yeah, that's really strange. I mean, what compelled them to come all that way to your wedding when they've never even met you?

Margot: Um, guys? Do you realize what you're saying?

It took me a moment to figure out what was so strange about our conversation.

So the wedding was nice, and Rae taught us a game popular in Cincinnati, and I realized that for the first time since meeting Spike in the summer of 2005, I was knowingly with another cancer survivor. (I'm not counting times spent with other patients/survivors in hospitals and doctor's offices.) And it occurred to me -- I really miss having a support group.

There are about 76 different things in my life at this moment that are affected by my cancer/diagnosis/survival, and I have no idea how to address them. Having spent more than a year without a cancer network (health-wise) and more than two years without a cancer support group (other than online), I've lost my sense of where to find help. I know I should push my doctor to get me an appointment with an oncologist -- any oncologist! -- but true to the first law of motion, I have a tendency to resist changes in my state of motion (current status of rate of motion: at rest).

I can't do this without face to face support anymore. I try things to make myself used to this current state of aftermath, survivorship, whatever you'd like to call it, but nothing works. I feel like I'm doing the same things over and over again without results. I try to get over my embarrassment of having had cancer by simply saying it to people all the time, but it doesn't get easier. I feel awkward and apologetic every time, and when people -- after hearing I've had cancer -- ask the inevitable But you're okay now, right? I stammer and stumble with my answer. Yeah, I say, I mean, I guess so, physically I think I'm okay, my doctors seem to think I have a good chance of it never coming back but . . . and I trail off. Some people ask how I dealt with it, and my answer is usually not well, and they look a bit shocked and sorry (sorry they asked? sorry for me? both?) and I ha ha, well I'm used to it now, pretty much used to it, you know, it's just, you can't do anything about it so why . . . you know, be angry, but I still get angry, a lot, but . . .

This is usually the part where the person I'm talking to has to a) go to the bathroom, b) pick up their kids, c) find their friend, or d) get a beer (however it plays out, it is an exeunt) and the part where I wonder how it is that I can do the same thing over and over and over again without getting better at it. If talking about cancer was like riding a bike, someone would surely have suggested I just stick to walking by now.

I contacted the Gilda's Club here in Toronto since I've had good experiences with them in the past and there was supposed to be a YA patient/survivor support group, but it was cancelled because no one signed up. Which leads me to suspect that there are few young adult cancer survivors, or that most of them have their shit together and don't need support groups, or that most of them are like me and find talking about cancer so difficult that they'd rather not do it at all, no thank you, not even with other young cancer survivors, this will not happen, thanks again, but no. 

So . . .

I was work at other day and a woman came in and we started talking about curly hair. I mentioned that my hair grew back curly after chemo but straightened again after two years. She looked at me intently and said you had cancer. Me too. Welcome to the god-damned club, and she opened her arms and hugged me tightly for an eternity and I almost cried because it was so relieving to be held by someone who knew.