It’s hard to believe it’s already been a week since I was in Vegas at the OMG2013 summit. I’ve been thinking about the experience and trying to figure out what I really want to say about it. First of all, if you are a young adult with cancer or a survivor – you need to look up Stupid Cancer. They have regional meet ups and the experience of the summit is life changing.
I’ve been very open throughout the past year with Fletcher. As a five year old, he is obviously keenly aware of the changes going on with mom. I have always been the center of his world and he does a lot better when he understands what is going on with me. Obviously, I have to break everything down into five-year-old-speak. One of the things that I have taught him in the past few months is that a person who has had cancer is called a survivor. Survivors are very special people and the people in their families and close friends who have helped to take care of them are very special people too. One of the most special things about survivors and the people who took care of them while they were sick is that they are instant friends. They have been through things that no one else has which makes them friends forever. It really is easier to break it down in those simple terms because it isn’t any easier to explain it to adults. There is no one who can understand cancer unless you have lived through it. Cancer is not alone in this – I think anyone who has been forced to face their mortality comes out changed. Walking into the conference and being with literally hundreds of people who “get it” is indescribable. It isn’t about the diagnosis. It isn’t a contest to see who had the “worst” cancer or the most treatments. We didn’t even talk about these things. It is about right now. THIS moment. That even with our scars, chemo brains, and “imperfections”, we are here. We are doing our best to do something with our lives.
I have come home from the conference feeling so empowered. So motivated to do something. Such a part of this large group of people rather than feeling so alone. I’m working with people at my hospital to start something. I’m not sure what it’s going to look like, but I know we can do better. There are a lot of us. 72,000 AYA (adolescent and young adult) patients are diagnosed each year. To give you a comparison, there are 10,000 children diagnosed each year. Hoards of AYA patients are being robbed of their fertility, facing losing their jobs because of the time off required for treatment and late effects, trying to navigate dating and relationships, dealing with their own changed self image, facing financial hardships to cover medical costs, and trying to retain some sort of “normal” life. For the most part, they are doing this alone. There needs to be support for our specific needs. Face to face, readily available, not sitting in a circle at the hospital kind of support. I am working to make that happen. Happily, these ideas have been well received and others are working to make it happen too.
One of the most impactful things to come out of last weekend is the realization that, for most of us, cancer is not the worst thing that has happened in our lives. For some of us it is. But it’s amazing how much good can come out of something so bad. Make no mistake, cancer is horrible. This past year has been harder than anything I’ve ever done, and I’m not done yet. Even though I’ve shared most of it through this blog, it is impossible to really share it all. There have been days that Eric has had to carry me because I didn’t have the strength to move. But it’s made me a better person. I think most people who have lived through it would say the same. It has changed my priorities and made me realize that I want to live big. I don’t want to look back and feel like I wasted my time. No matter when I go (you know we all do), I want my kids to have learned the lesson that is Stupid Cancer’s tag line – that we should all Get Busy Living. I’m not talking about being famous or anything like that. I’m talking about making a difference in what is important to you. Stop bitching about things you can’t change. Better yet, stop CARING about things you can’t change. We all know traffic sucks. We all know people are annoying. But once you realize that those things aren’t important enough to be annoying, aren’t impactful enough to “suck”, then you’ve started getting your priorities right. Something that you forget about an hour after it happens isn’t important. If it is important enough to bother you, then change it. Stop spending your life complaining. Figure out what you love and make a difference. It’s simple.
I am still working to educate myself. The summit had amazing experts in every conceivable field and they were all readily available to talk to. I have a list of books to read, sites to check out and products to look into. I have never seen so many valuable resources in one place. We learned everything from the advancing genetics used to study individual tumors and finding the exact medicines needed to treat them (oh how I wish I were able to have that) to environmental toxins and foods that will help prevent recurrence. If knowledge is power, then I am a much more powerful person for attending.
Since I’ve been home, I continue to be amazed at the friends I have made. I have been reading blogs, articles, and posts. I’ve been discovering new non-profits and corporations that can help me. I’ve continued to be empowered and motivated to do more. It’s like my own personal OMG at home. I’m so thankful to everyone for this. I don’t want to get used to things. I don’t want the feeling to go away. I need that motivation to remember how good it can be. And I need to figure out a way to provide that to others here – survivors and newly diagnosed alike. We shouldn’t be alone. We don’t have to be.