Wednesday, October 26, 2011

Cancer Limbo

I've spent the last week trying to think of an idea for this entry. Usually, they just come to me, usually I can open up my laptop, go to the link and start to write but this week is different. When it comes to cancer, I now write 'I used to have cancer', when it comes to doctor's appointments, my next one isn't until the end of November, surgery isn't until January and I haven't been 'cleared' to go back to work until February so what can I talk about? I am no longer consumed with it the way I was however, instead of dealing with the day to day aspects of cancer, now it is part of my way of life.

In the very beginning of my diagnosis (the first week), I didn't want anyone to know that I had cancer because I was embarrassed and I needed to get my head wrapped around the idea before I started sharing it with others. Then, I started telling people so they were aware of what I was going through. That slowly progressed into telling EVERYONE because I wanted women to know that cancer doesn't discriminate against age or family history. Now, my hair is growing back (it looks like I just have a bad hair cut instead of having gone through chemo), I'm not being monitored weekly by medical professionals, and treatment is officially done. It's like there's an expectation to go ahead and start healing when really I'm just starting to realize that I was diagnosed with cancer 7 1/2 months ago.

The thought of getting used to life the way it used to be is scary because I don't want to tempt fate. I don't want to foolishly start 'living' knowing that my body may betray me again. It's like I'm in this weird limbo... treatment is still so recent but at the same time diagnosis seems so far away. It's like I'm at some pivotal moment in life where staying at this stage is safe but stagnant whereas taking a leap forward is scary but the benefits may be worth it. I feel like I have these unspoken expectations placed upon me to be/feel better because chemo is over when in reality 8 months ago, I didn't even have cancer.

It was like while I was in treatment, being strong and positive were impressive and now it's almost like they are expected. It's like there's an assumption that because the physical effects of cancer are over, the emotional side should follow and somehow I feel like it has just begun. Treatment may be over but cancer certainly isn't.

At one point last week, I felt a little 'cancered' out. I was invited to go to an event that helped spread breast cancer awareness and I just couldn't go. The thought of saying "26... Yep, I know, and it's not in my family history either." one more time made me want to cry, not because I was sad but because I am so much more than my cancer diagnosis that I wanted to talk about anything else. Sometimes, it feels like I am retelling someone else's story because it still hasn't set it that I've had cancer. It feels like I know this person's story so well but the thought of actually having had cancer is beyond my mental capacity.

I want to help every woman out there, especially the young ones who have just found out that they have breast cancer however I have to find some way to balance my needs, with the pressure (that I put on myself) to be a part of absolutely every breast cancer organization, charity, program, group, etc.. When I was diagnosed I didn't know of any other young women with breast cancer; my surgeon, my post-op nurse, and so many around me said "You're the youngest women I've ever heard of" and although I now know I am not alone, I want the next 20something who hears "You have cancer" to know that she is not alone. And, absolutely every young woman that I have met who has had breast cancer wants to get involved and help other young women. I've been amazed over the past couple of weeks with the incredible women that I have met who have made it their personal mission to 'be there' for young women with breast cancer.

So, the point of this entry? You got me! I don't know, I guess it goes back to a few weeks ago when I talked about being there for someone who has been diagnosed with cancer; let her know you are thinking about her. Cancer doesn't end when treatment does. Also, I guess I wanted to let you into my brain and take a look around. This is such a mishmash of thoughts but I can't really make sense of what's going on up in that head of mine so I didn't think it was fair to make it clear for you when it's still so foggy to me.

What I have written so far was going to be my complete entry and then tonight happened and it all made sense...

So, over the past few weeks, I've been really involved in cancer. I'm taking part in a study for memory/chemo, I'm going to groups, I'm volunteering some of my afternoons for fundraising and tonight I spoke at an event of 100-150 people. In other words, I have taken on a lot and I am now paying for it because I am sick. Today, I had to go to the hospital to pick up some reports then headed over to a group meeting for young women with cancer then got home and dealt with some more insurance garbage then had a melt down.

I'm not trying to be dramatic but sometimes I just seem to be overwhelmed and don't want to have to fight insurance anymore, and wish I had a 'normal' life, I want my breast back, I hate that I've had cancer, I hate that I can navigate you through any hospital just because I'm good at and used to figuring out their layouts, I want to substitute my estrogen inhibiting pills with folic acid pills, my hair is awful, and now I'm sick. I had a bit of break-down today and then I had to put on a smile for this event that I was speaking at. So, I headed out, got to the event early, and at 7:40pm they announced that it was my turn to speak.

I get up there and all the saliva from my mouth disappears (luckily someone noticed and gave me a glass of water). I took a drink, made a joke, and kept going. The microphone had about a half second delay so it was hard to speak when all I could hear myself saying was what I had actually said 1/2 second ago. It was hard to speak because it was like you were trying to speak over someone else. Anyway, all that aside, I was well received - I got my story out there and everyone cheered and clapped when I finished. For the rest of the night women were coming over to me saying that I was brave and inspirational which meant so much to me (I promise, there's a point to this).

Anyway, it all wrapped up at 9:30 and as I was walking down the street to meet Keith, I heard "excuse me" from behind me. I stopped and turned around and a young woman approached me and said "I was in there tonight and I heard your story. How did they find out it was cancer?" So, I went over the whole process of the ultrasounds that led to a mammogram and the eventual biopsy. She said "I found a lump a year ago and the doctor said he would monitor it but they won't do a mammogram because I'm so young." I asked her how old she was and she said she was 35. I reassured her that it probably was nothing but told her to tell her doctor that she now knows of someone who is 26 who was diagnosed and you want further testing. I forced my email address on her in case she had any questions or concerns, no matter how small she thought they may be. She said 'because of you, I am getting a mammogram! I need to know what this is."

In that moment all the other cancer bull shit that I had dealt with today disappeared. In that moment when she said that after hearing my story, she was going to get her lump properly checked out, it made it all worth it. Yes, my mouth was dry and yes, the acoustics weren't great but that girl heard my message and she is going to do something about her lump because I shared my story. It's amazing that I went there to 'teach' and I ended up doing more learning than teaching.

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