What if there was a Rare Disease Manual? That detailed very explicitly what one should do after diagnosis on how to find balance in life again. How to interact with people in a safe and healthy way. Would you read it? Would you follow it? Would you do everything it suggested?
It is super clear to me that I am not over this brain tumor. The shock of it and all that lead up to both surgeries. I remember the moments before going into the OR like it was 4 hours ago. I can go back to the bad place in a hot minute. And, that scares the crap out of me. In more ways than one.
Sure, it’s almost 3 years since surgery and I should be “past” this, right? Well, I’m not. PTSD? Absolutely. Before you judge me and think, “Man Heather. Put on your big-girl panties and suck it up. You don’t have cancer.” – You’re right. I do not have cancer. And, I’m so thankful for that. However, EVERY SINGLE MOMENT OF EVERY DAY I THINK TO MYSELF, “Is this my last day? Is this the day BEFORE I find out I have breast or kidney cancer?” There are no guarantees in life either way. That I will or will not get cancer. I won’t bore you on the studies about PTEN mutations and lifetime cancer risks. But, the pressure and fear and waiting and unknown is quite paralyzing at times. All those jumbled emotions motivate me to write more. To find balance. To figure my life out today.
The living “scan to scan” – with Cowden’s Syndrome and Lhermitte-duclos Disease – isn’t really living. The what if’s? The unknowns. The responsibility; the pressure; the weight on my shoulders is sometimes overwhelming. Managing all the appointments and wondering/pondering, “Is there something else I can be doing to help my body not make tumors that can become malignant?” – I need a job -> money -> I can then buy things that will help me health-wise (juicer, gym membership, supplements since there is no FDA treatment for Cowden’s Syndrome or Lhermitte-duclos Disease)…The point is that I AM TRYING TO NAVIGATE MY LIFE WITH 2 RARE DISEASES. I am a work in progress. Remember the manual I wrote about in the beginning? Well, there isn’t one. So, I’m doing all of this without a net. Can’t you have some patience with me? Or some understanding? Instead of judging me and my actions, why not offer some compassion to me? Empathy? Understanding? This world of Rare Disease is terrifying. As I get more involved in it I see how different it is for every single person in it. My book wouldn’t even be the same as another person with Rare Disease, but I assure you: If there was a book I could read, or was recommended, on how to navigate life once again with all these things on my plate, I would read it in a heartbeat. This isn’t a fun place to be in folks. Lest you think I choose to be here…do think again.
Last night a friend told me that I have “walls up”. I don’t know how much truth is in that statement; however, I believe there is some truth. Emotional Pain is hard to let go of. Forgiving others when you’ve been hurt is a rough pill to swallow. Finding support from people you feel you can’t trust isn’t easy. I’m not here to chase people. I’m not here to hunt you down and guilt you into being my friend. I have said this before and I will say it again: Either you are in it to win it with me or you’re not. Period. That may sound dramatic, and I don’t mean it to, but it’s just reality. It’s life. It’s my life. All these things, plus more, is what I have to process through.
To be honest, (and here is where it gets even more raw) I think I had romanticized what getting sick/my diagnosis should have looked like. That my friends would have rallied around me. That they would have raised money for my medical bills, visited me, supported me, kept in contact with me, you name it. You hear about people who have life-threatening health issues and their friends raise the roof for them, right? I had none of that. And I’m hurt. Bitter. Angry. Resentful. Because it makes me feel like I don’t matter to them. I don’t know how to relate to certain people anymore after that. I’m worrying about the next breast MRI and whether I have breast cancer, and others are worrying about what so-and-so texted another person or about movies or dances. It’s PERSPECTIVE PEOPLE! It’s life! Life is in session!
Yet, lest you think I have completely lost my all of my marbles, my rational mind comes in and says, “But you don’t know what they are dealing with Heather. You don’t know their trials and tribulations.” And you know what? You’re right. I don’t know. Because I am managing my life with Cowden’s Syndrome and Lhermitte-duclos Disease the best freaking way I can. I don’t know any different! I’ve never done this before! I am figuring it out as I go.
I get that I must lay all this down. All these emotions that are jumbled up inside me. This is part of why I write on this blog. To feel my feelings with brain tumors and genetic conditions that (can/will) cause cancer. I do my best get it all out here, to process, then I get up from the chair and try to live my life the best way I can. I don’t know. I don’t know how to lay all of this down, that’s the problem. The hurt, the fear, the anger, the anxiety, the PTSD, the expectations, the resentment, all of that. Does it get easier?
I sure hope so.