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.

Comments

[karlamuggs]

Hi Louise

First time poster here, but just wanted to tell you I'm so glad you're okay (physically, anyway), that Rae's wedding was fabulous and that you've found a new friend.

Take care!
Karla

[Noelle]

"...and I almost cried because it was so relieving to be held by someone who knew."

Aww. Just aw. Glad you're back and safe and healthy and had fun with Rae.

[Jen]

So nice to hear from you. I could not agree more with your struggles in how to relate the idea of the cancer, now, in the aftermath to others. I struggle as well, and I am not sure at what point that gets easier. My answer to "but you OK now right?" is usually "I guess you could say that but I am not going to jinx myself my saying it." I too think about going to a survivorship meeting, there is a great organization in NY (not sure if it's national) It's SHARE (it's for breast and ovarian) and they have "young adult survivor groups." And I have been saying I will go, but rationalize that communiting into the city after a day of work is too much, always gets in the way. I hope you find the support you are looking for in the way that it is needed. Remember, I'm here. And I want details on Rae's wedding!

[Jeannette]

Finding a connection is so important. I have not attended a support group because it is so rare to meet other younger people who have had cancer. While I may not be as young as you, I still had my diagnosis young and at a higher risk age. We have to deal with dating, fertility, early menopause, and this cloud of cancer hanging over us for a very long time (if we are lucky). When you find someone with whom you connect, who truly understands all that, it's like a mini lifeline for just that moment. I am glad I have met all the internets to keep me going, but I agree, it is time for me, too, to find some face-to-face connections.

Thinking of you and sending you hugs.

[Terri]

So glad you had a great trip - was this Cincinnati game called "cornhole" perchance? The Gilda Club has opened an office in the same building where I work - they had a job opening that would've been perfect for me, but I knew I wasn't quite up to the task yet. Yay for making a new friend...there is a real lack of face-to-face resources for young cancer patients, gynecological in particular. Thank goodness for the internet!

[ellie]

Check this out - build your own support!

What if you could have fun while helping others? Throw a DOMINO Passionately Pink House Party™ with your friends during Breast Cancer Awareness Month.

House Party Inc. in conjunction with DOMINO magazine wants you to throw the ultimate fun, stylish party (in every shade of pink) on October 28th. It’s a great way to socialize while supporting a worthwhile cause. Each attendee pays a $20.00 registration fee and receives a gift bag that includes a year subscription to DOMINO and access to special contests and prizes through the event’s site. For each paid attendee, $5.00 will go to the Susan G. Komen Breast Cancer Foundation.

Best of all it’s easy to host – just visit www.houseparty.com, fill out an online application and if chosen you’ll get all the support you need, including your own party website with tools to manage the event. Comprehensive planning guides to assist party hosts, including entertaining tips, recipes and home decorating suggestions will be furnished by DOMINO. Of course, you can make the party truly your own by inviting guest speakers including breast cancer survivors and specialists, creating a theme such as “Pretty in Pink” where your guests dress only in pink or throwing a Pink Yoga party!

Join our community at www.houseparty.com/domino and help support the fight to end breast cancer! Together we can move one step closer to wiping out breast cancer.

[Linda B]

Please find a new doctor that will refer you to an oncologist without you asking him to. Your best defense against cancer is knowlege of it.
Don't wait any longer!

[dee]

I haven't been 'around' for awhile- but it's so nice to read about you first meeting Spike, and then Rae.. I know my situation is much different than all of yours, but I've gained so much from 'knowing' you all that I feel like part of the crowd. Take care of you...