Stirring September

I’ve put everything I’ve got into this. My body, my heart, my soul. This is the hardest I’ve worked at anything. Anything. Ever.

I know I’m a hard worker when it comes to all aspects of my life: my job, my family, my friends/social life. I worked hard planning my wedding. I worked hard preparing my speeches, and delivering them for my public speaking engagements and appearances. I work hard on this blog. I work hard with maintaining my health and eating right. I work hard at everything I do, everything that’s important to me.

But training for Tour de Pink? I have never given this much to anything, ever before.

With less than two weeks to go I am really feeling anxious. I feel like I’m ready, but now the hard part is maintaining that “ready” and waiting for it. Sunday I rode 60 miles again. It was a challenging 60 miles. That’s because I really didn’t take any real breaks, which I will be doing during Tour de Pink. And there were a lot of hills on the routes I picked. I knew I had to get a good, challenging ride in yesterday. Because now that the work week is here, it’s shorter rides until this weekend.

My thighs and legs have been a little bit sore for a while, but riding yesterday there wasn’t a single part of my body that didn’t hurt. Not just the normal legs and back, but my forearms, and my hands. My chest gets tight where my implants are, mostly on the right side. And my neck. OHHHHH my neck. During my second 30-mile leg I had to stop more frequently just to stretch. Just to lift my arms above my head and around my back because they felt like they were about to fall off. I kept reminding myself this pain may be uncomfortable and unpleasant, but it is not dangerous. It’s not dangerous pain. My body is fine.

I got off the bike after 60 miles and felt like I was going to collapse. I thought to myself, “Well, I’m never doing this again.”

And surprisingly, after stretching and a few hours of rest, I felt better and was actually (dare I say it?!) looking forward to my next ride!

Today I am really, really sore. There is no doubt about that. But today is a rest day and by my next ride I will feel better. I’m still torn between overdoing it and not doing enough. But I think at this point I could be ready for Tour de Pink tomorrow. At this point I feel like I’m just waiting for this next big thing. I’m trying to stay healthy and calm. It’s hard to give something your all while you’re waiting to give something your all.

My good friend Bethan just told me today that the hard part is over. The race is the fun part and I just have to go out there and give it what I’ve got. I do believe that, that this part, this training and anxiety and preparation is the hard part. Once Tour de Pink gets here I will actually be DOING what I’ve been getting ready to do for so long.

And I’ll remember what my mom always told me, and what I told myself during my first 5K, when it gets hard and when I feel exhausted and think to myself “I can’t do this” to remember one thing: I ALREADY AM.

When Tour de Pink gets hard, and it will, I will tell myself I’m already doing it. The hardest part is getting started.

I really didn’t feel like riding Sunday. But after my first few miles I told myself I had already accomplished a lot that day, and that was to just get on the bike and go.

I rode my first VERY hard and very hilly 30 miles, went home for a quick bathroom and snack break (practicing the Tour de Pink breaks every 20 miles), and then went out again for another 30 VERY hard and very hilly miles.

There’s one more weekend of longer rides. So I just have to get through Saturday and Sunday, and then get through my shorter rides until Thursday.

I really feel like I’m ready. I’m ready to do this. I’m not perfect, but I am where I wanted to be this close to the race. Not perfect with the clips, not perfect holding the handlebars, but good enough to ride 60 miles in under 5 hours and good enough to do it alone and with minimal breaks.

I’m ready for a fun experience. It’s unreal how fast the last 7 months have gone. What exactly was I thinking when I signed up in February? It’s very different from what I’m thinking now, I can tell you that.

I’ll give myself the anxiety and the worry. That’s not going away. It won’t; it’s who I am. I don’t do well when I tell myself to relax. So I’ll stop telling myself. I’m nervous and I’m anxious and I’m riding 200 miles on my bike. Ok, fine, that’s scary. But I’m ready and I will do my best and it is what it is, and it will be what it will be, and everyone loves me and I will be OK.

On another note, since I’m sure you all are tired of hearing about Tour de Pink and how cycling has slowly taken over my life, I am excited to be going to my first Li Fraumeni Syndrome conference in October! It’s in Boston, which is super amazing since I’ve never been to Boston before. This is also the first time I will meet, in person, other (yes, other!) families who have LFS. Sean is going with me which I am really, really happy about, because we can take in Boston together (he’s been before), and he can be there right next to me during the conference when I’m sure news and information about LFS is going to be overwhelming.

Since my LFS diagnosis the most I have done, besides talking to my genetic counselor, is my own research. From that research and taking into account my personal health now and my personal health history, I devised a personalized screening/testing plan to stay ahead of the LFS, as much as I can, which means, essentially, checking for cancer. Because LFS is responsible for many cancers besides just Leukemia and breast cancer, my regular screenings include that of my skin, abdomen and colon, in addition to the regular four-month blood checks I get and annual MRIs. The only scan I’m not getting is a full-body MRI (and a brain scan). I’m hoping the conference will shed some light on what I SHOULD be doing, besides what I’m already doing. Since nobody knows when, where, why or how LFS makes one predisposed to cancer, and since nobody knows how many cancers or when or where someone with LFS will get, there’s no actual “plan” to check for cancer. That’s why I made my own. I feel comfortable with my regular doctor visits plus my screenings. Of course, I would definitely feel better having full body scans and brain scans, but maybe that will come with time. Maybe that will be scheduled into my plan or maybe it won’t be recommended.

All we know is people with LFS get multiple cancers so the best they can do is always be looking for them. Which is what I do. I’m not “looking” for cancer when I get these scans; I’m just staying on top of things, if you will. The scariest thing in the world is thinking something is wrong. If I don’t feel right or there’s a lump or bump. That will always be the case. But there is SOME comfort in knowing different doctors are looking at all different parts of my body, from my skin to my teeth to my blood to my lymph nodes, throughout the year.

I’m sure the conference will be overwhelming, as this is the first time I’m meeting others with LFS and learning a lot of information all at once, but I’m also hoping it will be inspiring. If I honestly didn’t feel ready to “face” the LFS I wouldn’t go. If you asked me last year about the conference I would tell you I wasn’t ready. The diagnosis was shocking. (It was on my birthday two years ago if you remember from reading Pink and Pearls.)

Immediately I wanted to nothing to do with LFS. I was just told I have this rare genetic mutation that makes me prone to cancer. Yes, it explains the Leukemia AND breast cancer, but it also means I could get another cancer and it also means having kids is going to be a bit of a problem.

For a while I had to stay out of LFS message boards and the LFS group on Facebook because all I would read about would be people who had cancer again and again and again, and whose kids kept getting cancer.

So I stayed away, gave myself time, read what I wanted to when I wanted to, and came up with my OWN screening plan, one I’m comfortable with and one that doesn’t overwhelm me or scare me, and now I’m ready. I want to know more. Being educated about LFS is terrifying, don’t get me wrong, but I want to know for myself and my family.

It’s not just me I’m protecting anymore. It’s my husband and my future child/children. I want to be around and I want to be as healthy as I can. So I HAVE to know what it is I need to do. Plus this conference is a wonderful opportunity. To see Boston, to meet people and network, and yes, again, to learn more about something that’s always going to be a part of my life.

I’ll always be scared of it, but not knowing is not an option. Which is why I got the test in the first place.

Besides the conference next month (and I’ll mention it again: Tour de Pink at the end of September), there are a lot of amazing plans on the horizon! Football season, more upcoming weddings, more babies being born. I’m really lucky I get to experience all of this. And we’ll have our first fall in the new house!

I can’t wait to rest after Tour de Pink, and on a Saturday or Sunday in the fall, to bake an apple pie (yes, I’m going to bake), with the windows open and the fall breeze flowing through the house. With Sean watching football in the living room, Campbell sleeping next to him, and thinking to myself how the seasons always change and life always moves forward.