My Name is Not Cancer Girl

I know that I have spoken of the various communities that I belong to around here and how amazing and supportive they have been throughout this entire ordeal. Most of these communities are local, they are a network of friends, old and new, that I have had from high school up through meeting them at the boys’ school this year. But there is one community of friends that I need to tell you about, because they call me out and don’t let me hide.

I have a group of friends, we call ourselves Hussies, but to my family and friends in my local, everyday life, I call them my “online girls.” I met these girls through an online fertility site about 7 years ago. As you can probably tell by my approach to my cancer, I like answers, and I like taking control. So, when C and I decided to have a 3rd child, I went into hyperdrive and decided that since I was over 35, I was going to track my temps and body fluids so that I could get fertility drugs the minute we hit the 6th month mark of trying to conceive. I found a website that was setup to track these ovulation-indicators and spent 10 minutes a day inputting my temps and body cues to determine when I may be my most fertile (sorry Dad, I know you’re reading).

To help support us while we were waiting for our positive pregnancy tests, there were these message boards for us girls to support each other in our journeys to parenthood, for the first time or the 3+ time. Somehow, I began following a group of women who were going through struggles with infertility. Since I didn’t fit the group criteria (for Pete’s sake, I was pregnant with baby #3!), I started “lurking”, and following their discussions without saying anything. I learned so much from them, and their willingness to be open about their medical procedures, drugs, insensitive comments from people already living the dream that escaped them. I learned from them, long ago, that sometimes, no matter what you want of your body, it will fail you.

As some of these girls became pregnant, they set-up a sister board for the pregnant ones to share about their new adventures, and there I would sometimes jump out and announce myself as a “Lurker” and post congratulatory messages or offer advice about doctor’s appointments, childbirth, all the stuff that I knew. I had some of the answers and was able to share them with the newly preggo girls, kind of like What to Expect, but hopefully without all the fear mongering.

Somewhere in all of this, maybe about a year or 2 in, one of the girls on the preggo board told me that I had been around long enough and that I should stop lurking. I made the leap to a full on member, but primarily stayed on the preggo board. At the same time, the original website was becoming a little more censored, and our group of 60′ish was worried about being able to stay together. So, we bought our own website and began posting there.

Through the years, our numbers have dwindled. People have fallen out of communication, chosen to leave, been asked to leave. We are all over the world: UK, New Zealand, South Africa, but most of us are US-based. We do not discuss politics or religion on our board…it is a steadfast rule. We have taken trips together, and had girls weekends. Right now I think we’re about 30 strong. I am happy to say that every one of the 30 of us have had at least one child, but some are still struggling as they continue to create the family of their dreams.

As you can imagine, in our little group, we have also faced devastating loss. There have been failed Clomid/IUI/ICIS/AI rounds, many lost babies from miscarriages, and 3 moms lost little boys who were stillborn. Three of our girls lived through the aftermath of Hurricane Katrina. One woman’s young, loving husband collapsed and died from an unknown heart defect at 32. Another is helping take care of her sister who recently fell down the stairs and bruised her spine so badly that she needs to relearn how to do most daily activities we take for granted. We have weathered infidelity, job loss, parental death, heart transplants, childhood diseases, and now cancer.

The reason I tell you all this is because we have shared some of life’s greatest struggles, and I would do anything for these ladies. They continue to support me and my family…I cannot hide from them, and they call me out and ask me the tough questions. So, I’m going to share some of the nitty gritty of what I told them this week after I told them about the metastatic spot on my sternum. This is the real deal…my language is shockingly foul, but I’m leaving it uncensored.

Question: I read your blog but for some reason can’t post comments. So know that I’m reading. My main question is how are you doing? Like emotionally. Are you ok? Spill the beans if & when you need to.

I’m glad that you’re reading, and I wonder why you can’t post comments. If there’s anything else, ask here. I’ll answer.

I got the call from the doc on Thursday while home by myself. All I heard was sternum involvement and was off on a huge crying jag for 4 days until I met with her today. It’s always a good thing to have an extra set of ears in the exam room when going over something like this. C asked some questions, but I’m pretty good when I get Dr. A’s ear in a face-to-face. She is a no bullshit kind of broad, and if there was something that I needed to know, she’d give it to me kindly, but directly. So, I feel much better now.

I am not looking forward to any of it. Fuck, I never wanted any of it in the first place. But if it’s a manageable condition, and I get to see my kids grow up, then I am okay. Truly, I can manage most of the sadness by thinking about the future. I don’t spend a whole lot of time dwelling on what’s going on right now. But, if you take away my hope for a long future, I fall the fuck apart. I can’t look at the boys or C without sobbing. I find no solace in the thought of life going on…because all I think about is all that I’ll miss. I do have a few plans in place if I need them (buying enough birthday cards for each of the boys until they’re 40, leaving a video singing (NOT pretty), but I sing them “You are my Sunshine” often and to bring them comfort, etc), but haven’t yet acted on any of them…other than buying a little flip camcorder.

I know that there are no guarantees, but for now, Dr. A is convinced that we’re playing with the same deck I started with in September, so as for now, the tears are dry again, and I’m just trying to survive chemo week without losing my mind. Trying loads of water this round.

Question: Does it ever feel crazy-surreal to say things like “I should have my third pair of tatas by my birthday in October”?

There are times when I am definitely on autopilot. The surgery part doesn’t really scare me because I’ve been through it before, and quite frankly, my first surgery was more invasive…so I consider this “easy.” I am a little concerned about radiation since I’ve seen some horrible post-rads skin issues. I just have to remember to put special chemo moisturizing cream on 2 times a day. And I’m bad about that anyway. I think I remember face lotion about once every 3 days. The part where I get really messed up is the fear of the unknown. When I get new news and it shows more disease, I can’t help but thinking that this isn’t really my life. Or how unfair it all is. I’ve wished this away, I’ve wished it on other people who I deem more idiotic (driving behind the Ciroc ad with P Diddy, I was wondering why he didn’t have it). Not some of my nicer thoughts, but my thoughts nonetheless. I’ve thought that the results were wrong. I’ve thought it was all a dream, that a good night’s sleep would clear up, but a good night’s sleep is rare these days.

On the flip side, I also sometimes forget I’ve got cancer at all during that 3rd week of chemo. Typically I feel like myself, and food begins to taste right again. Sunday night I was up watching infomercials at 4 and there was a new product for curly hair. I was so excited to order it, and then got so annoyed that I couldn’t try it, like RIGHT now. So, sometimes it’s all I can think of (like Thurs-Monday) and then there are times when I almost forget.

So, there you have it. Another piece of my life. Another place where I turn to for support and love. To all my Hussies out there, I’ve said it before, but it’s worth repeating. You girls have courageously and generously shared your journeys, and have taught me how to share mine. I love you all.