Raw 101

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.


9 thoughts on “Raw 101

  1. I know it’s tough, and sometimes very lonely, but once you learn to trust and depend on just one person, yourself, you won’t need anyone else. The sooner you realize that you can’t use anyone for a crutch because they cant hold you up, they won’t hold you up, they don’t want to hold you up, the easier it gets. One lesson I learned from all of my stuff in life is that we all came in alone and we leave alone. Maybe life’s lesson is to learn to deal alone. Be strong, take a deep breath and be your own best support.

  2. dear heather,

    I found your site via a comment you left for another blogger – so I’ve stopped by to read about your story. good for you for the “raw 101” post! i found your candor about your thoughts and feelings very thought provoking – you are an excellent writer! and you are doing such a great job, not only with telling your story, but also providing vital information and more awareness of the rare diseases you struggle with. i hope that this most current post helped you, that it gave you some relief from the very heavy weight on your shoulders. i am sending you BIG hope and lots of warm and gentle hugs.

    much love and light,

    Karen, TC

    • Dear Karen: I have seen your name around other blogs I read – I sure appreciate your comment. You know, after I wrote this post I actually did feel a huge weight lifted from my shoulders. I really, really, did. That is part of the reason I write, and connecting with others (like yourself) sure doesn’t hurt! 🙂

  3. Hi Heather –
    I look at this as a phase – that will last forever. It is disappointing when people do not react the way you think they should. The resentment you feel is definitely valid. BUT DON’T LET IT TAKE YOUR GOOD AWAY! It’s a blessing that you blog so you can tell exactly what you want the world to hear. Then scream, cry…do whatever it takes to make you feel better. But don’t let the bitterness follow you around and drag you down. Pull it out when you need to, but try to concentrate on all the rest of the stuff on your plate — those things you can control — photos of your cat, moments with your nephews, hollering at the latest strange plot on Days.

    Keep blogging and continue to be real. We’re all there with you and we see where you’re coming from! Peace, my friend!

  4. Hi Heather
    Debbie said it very well. I agree attempt to control the other things on your plate. I would add the volunteering you do at school and the tutoring for English as a second language. We do see where you are coming from. Take Care Tami

  5. Hi Heather! Oh My Gosh, I love you! You know…it’s so hard to just live normal. I wonder what that “normal” is right now. Trying to ignore my dr. Appointments until the day comes? Hearing or looking at something on Facebook of how some had a marvelous time shopping today at Macy’s and seeing a picture if it all laid-out on their sofa for a picture. Their life seems so trivial. Oh just a comment about a little traffic, a hedge that’s too high, or losing their key. All crisis’! However, I almost have to go there myself to forget my major stresses in my life. My brother is in a ventilator and not expected to live. He had another stroke, yep connected to our stupid genetic heart defect. He’s so much younger than me. My mom isn’t recovering from her stroke and I see in my head this sobering thought…I’m next. My job, my real job is exercise, therapy, and very carefully choosing what I eat. The rest? Finding trivial stuff to do so. It makes me nuts with worry if I don’t. I’ll have to tell you about Melinda’s and Bree’s webpage I made for them called WWF while both girls were waiting for boyfriends far away. It was a huge list, even my other kids got into it not waiting for anyone–Tressa didn’t even want to a boyfriend. Not a bucket list; not a to do list… just some they we thinking in the back of their heads what might be fun to do. I adore your daily photos! We have to push little things and push ourselves to do and learn new hobbies, passions, and goals. Fill your life with tons of those, you crazy cat lady! Love that! BTW were getting county animal control barn cats. The real workers around here– but beautiful and I’m going to try and be buddies with everyone of them! Your Heading is super fantastic!

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