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Friday, September 30, 2011

You're So Vain

When I first started this blog I joked that I was a vain person (after all I did want to stay fabulous!), so I was really worried about the whole 'losing your hair' part of cancer and I really hoped I didn't. At that time (although I did cry about the cancer too) that was really my focus...knowing the high cure rates for Hodgkin's, I figured that I would definitely be cured so I put all my energy into figuring out how to not lose my hair in the process. Looking back I want to kick myself for being so vain, caring so much about the way I looked and not focusing more on my treatment. I had no reason to believe that initial treatment wouldn't work for me but I still wish I had at least prepared myself for the option that it wouldn't.

So you would think by now I would have gotten over my "vainness". First there was the hair, then one of the drugs in my initial AVBD treatment gave me small brown scratch marks over my arms and shoulders, then I had to have a port implanted and got a scar from that, then dark lines began to appear on my nails and finally with this recent open heart surgery I got this scar on my chest. With each change I cried, I complained, I didn't understand why this happened to me. For me, these changes on the outside revealed to the world that I was different, that I wasn't normal, that something was wrong with me. I hate myself for caring soooo much about the way I looked, especially when I'm fighting a horrible disease, yet it's almost like each physical change has made me care even more. Now instead of admiring celebs and models on TV and magazines, I admire old pictures of myself--with perfect hair, with perfect skin, with perfect nails--of course I didn't think so at the time, but hindsight is 20/20. I stared at the picture above on this post for about 15 minutes last night, wondering why I still couldn't be that girl...on her honeymoon, having what I like to call my "sports illustrated moment", posing in the sun, on a rock in Greece! That girl had no idea about what was about to happen to her in a matter of weeks. And even though I wasn't happy with the changes that had already taken place with my body, I would give anything to go back in time and be her again. As crazy as this all may sound, this is the mess that goes on inside my head

I'm now in the strange position of having to "check" myself. As I stare in the mirror and complain or cry about the changes with my body, I'm forced to say, "hey are ALIVE". If anyone was given the choice...a few scars or LIFE, I think we all would chose scars. And then I remember the stories I've read about other dealing with tragedy-soldiers losing arms and legs in war and still moving on with life, a young woman being burned beyond recognition in a plane crash and still moving on with life, and anyone who was ever dealt with a horrible physical circumstance and still gets up every day with a smile on their face, and then I feel ashamed. Who am I to cry about a few changes when those people have lost their legs or their eyes? There's no comparison. I feel so superficial and I hate that. I think it stems from my need to be a control freak and despite everything I've been through, my appearance has always been something I could control, until now. So it's a constant struggle to remind myself just how lucky I am--even when I feel my most unlucky.

So just add that to my list of inner struggles as I go through this journey! Yesterday I had my 4th cycle of SGN-35 which now has a real drug name but I can never remember it! Next up, the dreaded PET scan on Oct 19th. Here we go again. I can taste remission, I can feel the joy that that simple word can bring, just typing it brings a smile to my face and joy to my heart, I want it so bad. And despite everything, I think it's still possible. Me becoming less vain? I'm working on it!

Wednesday, September 7, 2011

Two years later...

This past labor day weekend Ross and I went to Martha's Vineyard one last time before the summer ended. It was beautiful as usual, but it also made me a little somber. Since it's the place that Ross proposed to me back in 2009, it's really special. However, since we only go in the summertime, it also reminds me of how many years I've been fighting cancer. I was diagnosed in July 2009, so the summer is always a reminder of how long it's been. Which, to be frank, really sucks since I love summer!

That first summer I was diagnosed, Ross proposed shortly after and I truly thought I would only be in treatment for 6 months and then I could move on, plan my wedding and be happy and healthy. And Lord knows I wish that happened. The following summer we went to the Vineyard a few months after my auto stem cell transplant. I had dealt with a year of vigorous treatment, I had to wear a wig, I didn't look or feel that great and I had a PET scan coming up in just a few months. I was so scared of what might happen if I wasn't in remission, and yet and I still thought that after all I had been through, I would be. But it wasn't my time yet.

And then this summer rolled around. In some ways I'm better, I'm stronger, not as physically fragile. Yet I still have cancer. I can't see it or feel it but I know it's there. And I hate it with every fiber of my being. I'm tired of thinking about it, talking about it, hearing about it, crying about it, and fighting it. I never in a million years imagined that I would still be dealing with this disease two years after we were engaged. I thought by now I would just be getting regular checkups and feeling like a survivor. So it's hard. Martha's Vineyard looks and feels the same each year, and yet my physical and emotional state have changed so much since that summer and it's hard not to think, where will I be in a year? What will be my mindset next summer when I step foot on the Vineyard? Because this world of medicine is so up and down, I never know what obstacle I'll have to face next...and believe me there are many. Starting this journey I thought it was just the cancer that would keep me up at night, but there are many, many other side effects that I would have never imagined. And it's a lot to deal with--just one of these side effects would be hard but I have like 10! So I'm scared...I wonder what's next? After the horrifying blood clot, I decided that situation had to be my rock bottom and I have nowhere to go but up. But unfortunately I don't get to make those decisions.

Today I had my 3rd treatment of SGN-35, which was FDA approved and now made available to everyone in my sucky position (basically anyone with relapsed or recurrent Hodgkin's) all over the country. My doctor said, "lets get you into remission and then we'll go from there". His confidence makes me confident. He said that the FDA approved this drug quicker than he had ever seen them approve something before. And yet, we never know until I have a scan, which will be after my 4th treatment. Lord how I hate the scans. They are the bain of my existence, the fear and stress that surround them is like no other. But it's a necessary evil to find out what's going on inside my body. Sometimes I just want to run away and never go back to the hospital or doctors office again, and I wonder what would happen? Maybe it was all a mistake? Maybe I was never really sick. I know it's not true, but sometimes I play the "what if" game with myself in the hopes I can wish it be true.

So two years later, here I am. Stronger? I guess some would say that. As much as I moan and complain, I have and always will be a fighter. It's exhausting to say the least but what other choice do I have?