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I’m Lucky

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I do not have a rare disease. I am lucky that what hit me last year is one of the most common diseases. It may suck, but people know what it is, doctors can easily identify it and there are numerous treatments available. People with rare diseases are not so lucky. Often just getting a diagnosis is a struggle, never mind finding a treatment. That’s why awareness is so important. And that’s one of the main goals of our Genzyme Boston Marathon Team – to raise awareness of rare diseases, as well as funds to support NORD, the National Organization for Rare Disorders.

Want to help? Bid on one of the very cool items on our online auction at www.runningforrarediseases.org – it ends on Friday, April 12, at noon, so you better hurry up! Not up for shopping right now? Put on some warrior paint, like Nick and I did above. Each of our Marathon Team members are paired with members of the rare disease community. Phil is running in honor of little Wylder James who battled Niemann Pick A disease, and his parents have started the Warrior Paint Campaign:

“To show Phil our love and support for his efforts, and to remind him our Warrior Wylder James will be with him in spirit every step of the way … we have come up with a Warrior Paint Campaign!!  The goal is to receive 1,000 photos of YOU in your WARRIOR paint by next Monday!! It’s simple.  Dabble a bit of Warrior Paint (aka. face paint, or sunscreen) onto your cheeks and the cheeks of those you love and send them our way.  Send to me at shannon@wyldernation.org or post to the WN FB Page at https://www.facebook.com/Wylderjames ”

So get out your makeup or whatever and share the warrior in you!

 

Facing Cancer

It worked. My determination to look forward and focus on the future really did help to pull me out of my funk and get me back on track. But what I also realized was that I couldn’t keep (and I can hear certain people snorting at this even before the words hit the screen) burying myself in work and denying anything is different. So I decided to finally – one year later – face cancer.

Just after my last blog entry called Facing Forward, I was on Dana-Farber’s website and found that a new session was starting called – ironically – Facing Forward After Breast Cancer Treatment. As you’ve probably figured out, while I love talking to people about their problems and helping them figure everything out, I’m not the biggest fan about talking to others about my feelings, especially if it could bring tears. But I realized that if I’m ever really going to move forward, this could really help. So I went.

It was the first time I’ve ever been in a room where the vast majority of women had hair practically the same inch or so length as mine – made me smile! As did hearing why these sessions were created: “Life as you know it is changed. You’re vulnerable. You’ve lost some control. You have a sense of time being limited.” Yup, yup, yup, yup. “During treatment you’re busy, focused on fighting.  Then it all stops. The transition can be very difficult. People assume since you’re done with treatment you should be ready to move on. And you feel guilty for not being there yet.” Exactly. Clearly I was in the right place.

It was explained to us that this is a “psycho education group.” So not a straight support group exactly, but a combo with expert speakers, the first being a medical oncologist. You would think after all the time I’ve spent with doctors during the last year that I would know it all – but I learned several new things – and felt good that I was able to answer some questions for others and help them, too. Some of what surprised me, I think I have heard before but probably just didn’t want to believe – or hoped that I’d be the exception. Not seeming so… As many of you know, I’ve been frustrated because I’m not back to where I was running-wise. Well, one thing I learned was that fatigue typically lasts about two years after treatment. Two years!!! So I guess my slow three miles (more walking than running), three months our of treatment, is better than nothing. You know what else can last two years? The neuropathy – the numb tingling feeling in my fingers and feet. I’m so sick of that – but guess it may be around a while longer…

But I’m here. And I’m basically healthy. And I have the best friends and family in the world. And I love my job. So I’m happy. And thankful. And I’m on the right track.

So I didn’t stop there. On Saturday, I took another step: I went to the Young Adult Cancer Conference at Dana-Farber. And I was really glad I did. More than the sessions, it was meeting other people around my age who have faced (or are facing) cancer, that made it such a worthwhile day. Everyone has a story, and they are all so compelling, no matter how straight forward they are. Kicking off the day was Mike Lang, a cancer survivor who, with his wife Bonnie, has completely transformed his life to help others facing cancer by taking them on adventures through Survive and Thrive Expeditions, as well as helping them tell their stories through movies, like Wrong Way to Hope. He shared his amazing story and clips from his latest venture: Valleys, which you can watch on Huff Post – Generation Why. Try to watch any of his work without shedding a tear – I dare you! It is so raw and true – we can all relate. What I really love is his motto: Reflect. Refocus. Rebuild. Live. Yup – that is exactly what I am doing!

Facing Forward

I haven’t posted in a while for several reasons: We were away; I was sick, including while we were in Florida; it’s been crazy busy at work both before I left and since I got back. But I guess the real reason is I haven’t known what to say. Or I should say, I don’t like what I’ve been feeling and hate being negative.

I’ve been having a really hard time with this anniversary. Last Thursday was one year from the day I found the first lump, and this Wednesday is the anniversary of the diagnosis. And I have just been living with this heavy dread, constantly fighting off tears, and in this just dark place. I hate to be that way. I slept till noon yesterday, and only woke up because Nick kissed my forehead to tell me he had great deli sandwiches in the living room. So I moved to the couch, had a few bites, and vegged back out. The only reason I got up at all was because we had a Running for Rare Diseases fundraiser and I try to never miss those. So I rallied for a few hours, but then went home and crashed again.

I woke up in the same funk. It’s been like living that time over and over – only this time it’s actually been worse, because I know the outcome. Last year I was out drinking and having a merry time with my cousin on St. Patrick’s Day, not thinking that the biopsy would actually come back cancer. This year I moped around the apartment. Let me tell you, the emotional scars are so much worse than the physical ones… I’m dwelling and I despise that. So I’m done. I can’t do this until Wednesday or I’ll go crazy.

So what? So what if it’s the anniversary? So what if it was a hell year? So what if my life is completely different? So what if it will never really be over? What is crying over it actually going to do? Nothing. I have to stop thinking about the past and focus on the future. Or at least start living in the present again. I may not really like everything about my current reality, but at least I’m here. I lived through it. I made it through surgery and chemo and radiation. And I’m recovering. My hair is growing back – strangers no longer see me and know I had cancer. In a few months I can have my implant surgery. Eventually I’ll feel like a normal girl again.

It could be so much worse. I am lucky. I know that. Blessed. And I am thankful, so thankful… Speaking of thankful, thanks to all who joined me in Florida last week – even those I only got to see for a few minutes! Nick, Tara, Kevin, Mike, Steve, Kelli, Hudson, Holden, Shannon, Jack, Julian, Janie, Monique, Dad, Maggie, Mom, Mark, Jake and Kacie (and congratulations on your engagement!!!)… it really was a great, relaxing time. And now I’ve done the requisite celebrating and can move on.

I’m going to do my best this week to stay focused on the future, and leave the past behind me. An anniversary is just another day. It is not happening all over again, so no need to keep reliving every moment over and over again in my head. What’s done is done and I have come a long way from then. No more mourning who I was – time to get back to getting comfortable with and accepting the new me. She’s not that bad, and hey, with a little time and attention, I can make her that much better…