Any tendencies I had to blush while hopping into my hospital gown are now gone. I will strip naked in front of any nurse or doctor any day of the week. That’s just what Cowden Syndrome and Lhermitte-duclos Disease have given me! Shall I be grateful? Not really. But since I’m kind of a professional patient now there’s no need for me hesitate. I will jump right in to get the business done. No time to waste!
Oh, and by the way, speaking of waste, tomorrow morning I have my next colonoscopy. I don’t like that I am high-risk colon cancer, and in fact I don’t like that I am high-risk any cancer. It’s just what is today. This is almost hour five of me trying to get the prep down. It’s rough. And I mean r o u g h.
Please send me good MOJO in the morning! I really appreciate it.
I used to watch a lot of movies and I used to be a very avid reader.
Since my brain surgeries those hobbies have gotten pushed aside.
BUT, I just saw Coco and am currently reading Lightning and they are two of the most captivating movies and books (respectively) I’ve ever seen!
There are about 18 different directions I could take this prompt. However, since this is a Rare Disease Awareness and Advocacy blog, why don’t I write about how my life suddenly changed on July 18, 2011?
If we go back to the beginning, see this post about what led me here. (Boy, I just took a few minutes and re-read those posts from the
early dark days. My anxiety is full-bore right now…I am so thankful that time of my life is over.)
Sometimes I wish I only had the brain tumors, and not Cowden Syndrome also. It seems like my energy could be put to better use if I was focusing on healing and recovering from just one condition, not two. HAHA.
Yet, life doesn’t roll like that for me. I do have this thing called Cowden Syndrome and sometimes it’s a beast to carry. This month I have a lot of medical procedures and I am already nervous about them. I have tried to focus my energy on other things (reading, volunteering, etc.) but I know I will be slapped upside the head come next week. I feel this need at times to “be prepared” but some days I want to put my head in the sand and not come back to reality for like 2 months.
Next week I have the colonoscopy and EGD scheduled; really really really really not looking forward to that again. I tell the doctors every time that I need to be sedated before going in. Not one doctor has listened to me and I have such huge PTSD for anything related to surgery/procedures that I have a full blown anxiety attack right before I go under. And that sucks eggs. Bad. I pray this time is different because I met the doctor at my pre-op who will be the one doing the procedure, and I begged him for something before going in. He got it! Please keep your fingers crossed that it will be smooth sailing. 🙂
I am not even going to discuss the EGD right now. Denial is a wondrous thing at times.
The last week of March I have the breast MRI. I don’t want to write about that either as I want to enjoy a bit longer my trip on the River Denial.
My hope is that if I can reach just one person who might say to themselves, “What’s a Rare Disease? What’s Cowden Syndrome? What’s Lhermitte-duclos Disease?” then all I’ve endured so far will be worth it. I wish someone (friend or medical personnel) would have told me in 2011 that I am not alone, and that I will be OK.
How appropriate today’s daily prompt is! As I am pondering this early Saturday morning a few things keep going over in my mind:
Life is messy. It just is.
What matters is what do you do with it, right? I know I say that often, but I want to keep reminding myself that although my (medical) life is out of control, and that directly affects all other areas of my life, I am still here! I can and should still exert control (my choices, rather) on what I do and do not want to do with my life. My bedroom is a hot mess. My closet is a hot mess. My hair is a hot mess. My car is a hot mess. I guess I just have embraced the messy because I feel that’s a representation of my life. (!!!!!!!!)
Gosh, who knew that blogging could be such great therapy, LOL. That’s exactly it. I’ve been absorbed into the mess that is my life and cannot find a way out of it.
YET, I do have a choice!
Even if it’s as simple as reading a good book. Or listening to music I enjoy. Or cleaning out the trunk of my car.
Cowden Syndrome and Lhermitte-duclos Disease robbed me of the life I hoped and dreamed to have: Mother, wife, blah blah blah. When you have no dreams or hopes and feel your life is a mess…ew that’s just too much for any one person to handle.
I am reminded I only have to “handle” today. I will finish this blog post and and start on my laundry. Then, I will make sure I make time to pick up this book that I have been trying to finish for years!
Thank you for being here! ❤
What are you doing today?
No one should live in constant fear of a brain tumor growing or one day getting diagnosed with cancer.
No one should. Ever.
However, I do.
My task is now managing fear of the unknown while trying to enjoy the life I’ve been given.
In this present moment I should be getting ready for church and pondering my Primary lesson.
However, after reading a few of the other blog posts this morning on the Daily Prompt I am now thinking about how difficult it is for me to
be stay acknowledge the present. My mind is flooded with moments before being wheeled into operating rooms, moments after having a CT scan, basically moments in the past.
I see it clearly. I know what needs to be done. I just don’t know h o w to do it. How to get out of the past and into the present.
During my recovery from the brain surgeries someone told me, “Oh Heather. You’re so brave. I couldn’t do what you’re doing.”
Ugh, that comment still makes my blood boil, even years later. I get that she was trying to be supportive or caring, but believe me that isn’t the way to go about it.
I am not brave. I am not courageous. I wasn’t climbing a mountain or swimming with sharks for Pete’s sake.
I was trying to not die.
I’ve read different blogs for about 30 minutes this Saturday morning. Trying to understand what I am feeling, or at least distract myself from what I am feeling.
Some mornings I awake and think to myself, “I should write today. There’s so much anxiety coursing through my veins, I need to get it out. I need to cry, scream, rant, process it all here. I am actually quite nervous about my breast MRI next month. I wonder if this will be the day I get the news? Will I hear the “C” word that day?
Then I have my consult for my colonoscopy and EGD this month. My esophagus hasn’t been very friendly these last few years and I wonder how my throat looks now? I also just found out that I am now going to have to pay every time I see my doctors, and believe me, there are many that I see. So, I don’t work with any regularity and was denied disability, so how in the world can I afford to pay the doctors every time I see them? OH, I CANNOT PAY THEM. That’s right.
And, even though I can work on-call some days, when I am feeling well enough, I still cannot avoid bankruptcy. And, I had 2 job interviews these past 2 weeks and didn’t get either job! What gives? Why can’t I catch a break? My life sucks and I cannot get my head above water. I feel like I am drowning, literally. I don’t insist on much. Really. And now, I don’t hope too much either. I’m tired of the stress. When will it end?
Whoa. As I just wrote that I felt a lightning bolt – that’ll happen when I’m dead.”
Since getting diagnosed with 2 rare brain tumors and a Rare Disease called Cowden Syndrome, I’m not a huge fan of medical/doctor type things: I have my next breast MRI coming up, along with my follow-up colonoscopy and EGD. I always tend to wonder, “Is today the day I get diagnosed with cancer?”
I think it’s some type of PTSD from the brain surgeries, and while I know I am not having brain surgery today, it’s still a painful pill for me to swallow most other days. My life now will never not have any medical/doctor type things in it.
I must remember to B R E A T H E through the anxiety….
I am still bewildered, even 7 years later, that I have 2 brain tumors and a Rare Disease called Cowden Syndrome.