When I created this blog, I thought I was doing it as a way to get out everything I was feeling inside, but didn’t feel comfortable talking about out loud. Now that I have been doing it, and promoting it on social media for about a month, I have been coming across SO many people who are in the same situation as me (CDH1 positive, battling stomach cancer, having a genetic mutation, etc.). Prior to my surgery, I was unable to follow Facebook groups that were there to support those dealing with CDH1 specifically. To be honest the groups scared me. It was scary to read about people losing their family members from cancer related to the CDH1 mutation. It was hard for me to even think about the surgery at all. In fact, when I saw a therapist a few years ago I never once spoke about my surgery or the fact that I had CDH1. I was in denial and I had no intentions of facing reality. Well, this literally continued until after my surgery. Once my stomach was gone and I was told I had cancer, at the age of 25, I knew I needed to speak up about this. I now understand why so many people share their stories, the amount of people that die related to cancer caused by genetic mutations is shameful. Awareness for genomics is not spread often, and those that do spread awareness inspire me to do the same.
One of the first people I came across is a woman named Kate, she also has CDH1 and we met through Instagram right before her stomach removal surgery. I believe she was the first person to connect with me who had CDH1. I admired her, she had already undergone a double mastectomy (something I will need to get soon), and she is so positive and strong in all her posts. When she had her stomach removed, I remember stalking her page to see her post about making it out of surgery ok, I was so happy when I saw that her surgery was a success and had no complication. Just the other day I was talking to her on Instagram and she told me about a term I had never heard before, “previvor”. A previvor is someone who has a genetic mutation, or a predisposition, that increases your chance of having cancer. Previvors get preventative surgeries to stop the cancer before it forms, because they know they have such a high risk it is better to stop it before it even happens. In a lot of cases once cancer is detected, it is too late. This is especially true for people with genetic mutations. Previvors are warriors that take the jump to remove the part of their body that is prone to cancer. I am EXTREMELY proud to say that I am a previvor. My surgery was 100% preventative, no cancer was detected in my stomach from any of my biopsies. Well, if you follow my blog, you know that cancer was found and my surgery was a blessing. However, since I didn’t know I had cancer beforehand, and I got the surgery under the knowledge that it was preventative, I am under the category of previvor. Kate is also a previvor, she removed her stomach to prevent the chance of getting gastric cancer. If you refer to one of the pictures I attach to this post you will see the post Kate made two days ago, on Instagram, that informed me of what a “previvor” was. Her story moves me, and she constantly inspires me to be positive. Also, please look into her blog: www.mypinkgenes.com/blog
The next person I want to talk about is a man named Vukane, he is from South Africa, and he actually came across me on my blog. I was super surprised he found me because I had only a few posts at the time, but he did and I feel like it was fate. Vukane is getting his stomach removed in November, they have found cancer and the next step is to take the entire stomach out to prevent it from spreading any more than it already has. He reached out to me a few days ago, on Instagram, asking about what life is like once you don’t have a stomach. I instantly asked if he wanted to video chat with me so that I could answer any questions he had. If you refer to the images attached to this post you can see a screenshot of me talking with him. When we spoke it was an emotional conversation for me. He has undergone multiple chemo treatments, and he is worn down. He doesn’t know how much more he can handle. Thinking about it brings me to tears. I pray that his surgery goes well, I pray that they cure him of cancer, I pray that all the pain he is enduring stops. Nobody deserves this, and nobody deserves to feel like they are going through this alone. I promised him that we would speak again before his surgery, and to reach out to me for any questions he has. I love being able to share my experiences with others that are about to go through the same thing I just went through. I want people to feel comfortable enough to reach out to me, like Vukane did, and ask things that they’re afraid of regarding stomach removal. Let’s be honest, it sounds really freakin scary and it’s not a common procedure, I look back and wish I had reached out to more people about their experiences because it probably would have made the whole thing less scary for me.
The last person I want to talk about is a man named Jason. We connected through Instagram and let me just say my first impression of him was not the best due to my sensitive self. He commented on one of my pictures of me sitting on the bathroom floor with “Dumping??”. I immediately thought some random dude on Instagram was making fun of me and I got pretty salty for a second, until I went to his page. He also has CDH1 and was just asking if I was experiencing dumping syndrome, can you imagine the guilt I felt in that moment? I went through some of his pictures and saw that he had just received his last round of chemo, and he wrote about how he would never take life for granted again and wanted to live to the fullest. I kid you not, I sat on my couch and started balling my eyes out. It broke my heart to see someone have to go through all that, while I was fortunate enough to have caught my cancer early enough. It doesn’t seem fair. We ended up chatting and I found out that he has lost multiple members of his family to cancer, and his younger sisters are in the process of getting tested for the CDH1 mutation. He said that he wanted to show one of his sisters, who has been extremely scared she will have it, my Instagram and my blog. He wants them to see someone young and thriving following a stomach removal. I don’t think words can even describe how touched I was by him saying that. The fact that my Instagram and my blog is making a difference and reaching people just pushes me to share more. Jason does a lot of volunteer work to spread awareness for CDH1 and stomach cancer, he is an absolutely superhero. An inspiration is an understatement for all that he does. I told him that if I can help in any way to spread awareness, or volunteer my time to help, I will. I have a picture of our first interaction on Instagram attached to this post.
These are just a few of the people I have connected with since I started spreading awareness. It is amazing the impact you can make if you just put yourself out there, I’m honestly so surprised at the amount of people that actually take the time to read my blog. I love that this blog has turned into something I never thought it would be. I love that I am meeting people who are just like me and dealing with the same things I am dealing with. I love how much we empower each other, and lift each other’s spirits up. We never talk about the negative, we always talk about hope. If you, or anyone you know, is dealing with anything involving a genetic mutation, CDH1, stomach removal surgery, cancer, etc. PLEASE reach out to me. This community will support you, and I promise to personally empower and help you along this journey. We are in this together.
