Finding Fast Friends on Day One of Living LFS Family Camp

Authored By: Joni Allred

After driving seven hours through a mostly empty land, we drove into the parking lot ready to be free of our vehicular prison. As we pulled up, we saw a man and woman bringing in their luggage. They both gave us a very friendly wave with big smiles on their faces. We had never met these people before and yet they greeted us as if we were old friends. Why would complete strangers be so happy to see us? Because we share a common path. 

When my husband and mother-in-law were both diagnosed with brain tumors only weeks apart, I felt like our family was unique in our trials. Cancer seemed to be picking on our family. But after our LFS diagnosis, we learned that we had actually joined a club of people where cancer is intertwined with the club members’ lives. It is a club you wouldn’t want to join, but once you are in it, you are happy to find others that know how you feel. 

As we entered the lodge to sign in, I was greeted with a big hug from a Facebook friend. It was so fun to finally meet in person. Then we were off to find our cabin. We politely met our cabin mates and chose our bunks. Then it was off to dinner. As we ate, we made introductions to others and learned a few names. As I sat eating my meal, I looked around at these new faces and wondered their journey. When meeting someone new, I didn’t want to say, “Nice to meet you. Do you have LFS? Do you have cancer?” Not sure the protocol of finding out people’s history, so instead, there were the formal introductions of, “Where are you from? Who are you here with?” But I wanted to know so much more. 

After dinner, we headed back to our cabin. A new family had showed up to our cabin so again we made the formal introductions and made polite conversation. After a little while, one person said, “So who has LFS in your family.” I thought, “Finally, let’s talk!” So us three couples sat and shared our stories as the children ran around the cabin and played. We talked of the cancers each family had experienced, when everyone was diagnosed, and what their experiences have been with screenings. 

After staying up too late visiting, we finally climbed up into our comfortable bunk beds and turned out the light. I went to bed feeling so happy. I felt like we had just made friendships that were not on the surface, not superficial, but that were deep, connected. Why? Because we understood each other. We could talk freely about family members lost. We could talk freely about fears and frustrations. We had found a group who understood us and that opens the doors to friendship and connection. I went to bed looking forward to who I would met the next day. My goal is to meet every person here. I hope to reach that goal because these are amazing people with amazing stories.

Pre-Camp Considerations

by Fannie Lemay

I hate social gatherings. All of them. Parties, family reunions, dinners with more than four guests… just I don’t like it. Even if I like every person present. So as I’m packing my luggage do go to Montana for 4 days with a bunch of strangers, I keep asking myself why in the entire hell am I going to this camp!?

We’re going to spend all the days together. Eating together (THEY ARE GONNA SEE ME CHEW IN THE MORNING), hiking together, sharing bathrooms, and even SLEEPING together. You understood well. I’m gonna have to share my BEDROOM with six other people. Basically my worst nightmare. So why did I choose to spend hundreds and hundreds of dollars to put myself in a situation I hate? Because I need to. 

Being diagnosed with Li-Fraumeni is isolating and overwhelming. The idea that you have almost 100% chance of getting cancer in your lifetime, coupled with all (ALL) the screening we have to go through on a regular basis, is enough to drive someone insane. But then, you read, you learn, you surround yourself with the best medical professionals you can find and you become competent at Li Fraumeni Syndrome. Slowly, it becomes your new normal. I got used to getting MRIs every two months. I got used to blood draws and treatments and hospital gowns and surgeries and even to all the anxiety that comes with it. The hospital became my second home, my doctors became the team of superheroes that work so hard at keeping me alive and my therapist became my lifesaver. But while I am no longer overwhelmed by my disease, I’m still alone.

So there you have it. That’s why I’m going. Because I’m alone. Don’t get me wrong, I’m not “alone” alone. I have my amazing husband and son, who are as supportive and lovely as they can be. I have my friends and my sister who are there when I need to get out of my house and my head. But the only friend who could really understand what it’s like to live with a serious chronic disease, I lost him. His brain imploded one day and he was gone. I lost him and I miss him every day. Because you need people who understand. You need people who know. People who know what it’s like waiting every goddamn day for the other shoe to drop. People who know what it’s like to get your body cut and stitched back together over and over again. People who know what it’s like when your life goes from light and beautiful to heavy as fuck with only three words: Li-Fraumeni syndrome or you have cancer.

So I guess I’m going to not feel alone even if it’s only for four days. I’m going to hate every second of the plane ride to go where people understand me. Where my other family decided to go to be with people who understand. And it’ll be horrible and lovely and exactly what I need.