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.
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.
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’m trying to kick up my exercise again, because surgery last month put a wrench in things.
crazily, luckily, I got a quick walk in yesterday (I should be doing more intense workouts, but I’ll never stop being surprised at how much walking challenges my brain/balance, etc.) I was pondering about my life (blergh!) and I realized: WOW. I HAVEN’T HAD ANY COWDEN SYNDROME STUFF GOING ON THE LAST LITTLE WHILE. (Granted, surgery. But that wasn’t CS related technically.)
I felt like a normal person! Albeit, for about 15 minutes. But, still I’ll take it.
Because then I remembered I have my brain scan next month because gangliocytoma. And, while choosing to have the prophylactic hysterectomy in 2013 helped tons (no uterine cancer here baby!), I still have to get a clinical breast exam every few months, in addition to the all the other scans.
I guess this is part of what life entails, right? Little moments of breathing in between the big stuff.
Or in my case, the big brain stuff.
“What brings you in today? I know we just saw you in March.”
W E L P …
I met a very nice hospital employee this morning. I am finding more often I am getting nice ones, which is a huge deal! When you have to interact with a sucky medical employee it’s such a freaking drag!
As I was in the exam room, I began my story:
- PTEN mutation
- Breast Cancer risk
- Similar to BRCA mutation
- Brain tumors
And the list goes on. I kind of have my “go-to” story when I meet new medical professionals. She was friendly, and I could tell she has been around the block (but I don’t mean that at all in a negative way). She says to me, “I have been around over 20 years and I’ve never heard of PTEN mutation.”
GAH THIS IS SO WRONG PEOPLE!
She was nice to let me rant a few minutes about how irritated I am that “everyone” seems to know of BRCA mutation, but no one does of PTEN and it’s JUST AS SERIOUS AS BRCA! (I would like to add here though that any medical condition that causes a woman to be at high-risk for breast cancer is serious, whether it is a 10% lifetime chance or 88% lifetime chance. But, anyway…)
I made it through the appointment with flying colors (haha) and then got dressed and went along my way. As I was going to my car our entire conversation really struck me: How
thankful lucky I am to have been diagnosed as quickly as I was. Can you imagine if I had Cowden Syndrome and yet didn’t know about it yet? Regardless of zero family history of cancer. What about all these women who are getting tested for BRCA mutation and yet PTEN mutation is conveniently being left off? I really feel that Cowden Syndrome really isn’t as rare as the numbers say, and that is paralyzing for those who have it yet either aren’t diagnosed with it, or are diagnosed later than they should be, or have had multiple cancers (breast, thyroid for example) and that is not coming up on anyone’s radar?
Gosh, I could go on and on about this of course. My hope and prayer that at least one person will be educated about PTEN mutations via either my story, or another’s who has found their voice to shout! (NOTE: the employee did say, “Thank you for educating me about that” which was really nice. Those types of conversations really give me strength to keep writing, because validation.)
PS: Please visit my link and consider supporting if you can. Every bit helps! ❤ Thank you. Let’s all bring awareness for PTEN mutations.
Sometimes, it’s fun to look back at from where I came. My real medical life began in 2003 when I got diagnosed with thyroid cancer. I hadn’t really been all that sick prior to that. Little things here and there, had my tonsils removed when I was 19, that’s about it.
Obviously I can connect the dots now and see how most everything from birth-2003 and then 2003-2011 screamed Cowden Syndrome, but whatev. Did you know that thyroid cancer is one of the “signs” (my words) of Cowden Syndrome?!
I saw the endocrinologist this week. With all the ones I’ve been through, not including one specific one who was my doctor for EIGHT YEARS, this current one is pretty good. I’ve had better (see previous sentence) and I have seen much worse.
People can’t seem to leave my TSH alone. It’s either too high; too low; too whatever and we have to worry about blah blah blah. I just KNOW how I feel when my TSH is a certain number. Can’t you all leave me alone? (NOTE: Mild sarcasm. I get it.)
I saw Dr. Endo this week. He loves my TSH at 1. something. I hate it.
I love my TSH around .10 or .20. But, he doesn’t.
Anyway, more blood work. Checking of my T3 or T4 or something. I don’t know. Then, I see Dr. Oncologist in the next weeks to check The Ladies.
What’s new with you? 🙂
First off: hahahaahahahaaaaaaaaaaaaaaaaa. I love this prompt!
Second: Happy Monday!
Third: I am reading this book and CANNOT put it down! I was up until 1 am this morning (gah!) convincing myself, “One more chapter. One more chapter!” Without giving away too much of a spoiler, I was going to be VERY BITTER if Orson got hurt!
So, onto the daily prompt: Let’s expound on this for a moment…
- I have 2 brain tumors
- I had to have a hysterectomy to manage my uterine cancer risk
- I live at home
- I am not able to work
- I am overweight
- I had thyroid cancer
- My esophagus is lined with an innumerable amount of polyps that (may) or may not turn malignant one day.
- I could find many more but let’s stop there.
I am not writing those things for pity. I am writing them out as they are my reality since July 18, 2011. Couldn’t I be bitter? Shouldn’t I be bitter? And to be honest, I think in the beginning of this new life of mine I was in fact very bitter. I had big dreams! I was going to have a career and a family and be a wife and a mother and and and and….but in fact, my life didn’t turn out that way.
Today I have my bitter days, but now they are more bitter hours. (Progress!)
Some days I wake up pretty bitter that I can’t go out with friends, I can’t work, I can’t be a mother, I am not an independent woman, blah blah blah. But, I can better name these moments now, and I while I may entertain the thoughts for a short while (because my feelings are my feelings and I want to honor them) then I move on and distract myself doing something else. Whether that’s exercising, walking, volunteering, cleaning around the house, helping my family, writing on my blog, taking photographs (which is my new LOVE!) etc.
I think it’s very natural and normal to be bitter about things in our life. What’s important is how we deal with that emotion. Please don’t let it eat you up inside. We are in this together. ❤
…to say, “I’m tired. It’s hard. I am scared. I am alone. I am struggling” because, let’s face it. That’s pretty much the entire theme of this blog and I have pretty much got that covered. If it can be said, I probably have already.
But part of the reason I continue this blog is so that if anyone happens to find it who’s tired, scared, or lonely too, will know they aren’t alone.
Here’s some things going on here as of late:
- Our refrigerator broke. We have been living out of a cooler for dayzzzzzzzzzz.
- I’m dealing with daily migraine headaches
- I was rear-ended last week while I was in my car, parked. Thankfully there wasn’t any damage to my car and I am feeling better now
- The unstable man at the doctor last week is still on my mind. That incident changed me.
- My passenger side car door was dinged by an older man. When I got out of my car to check if there was any damage, he started to verbally assault me in the shopping center parking lot. Thankfully there were several people around who saw the incident and I thankfully had my cell phone in hand. When I started to take his picture he quickly de-escalated.
- I haven’t done my taxes yet
- My car needs some desperate work to it
- I had my mammogram yesterday. Those days are always heavy on my heart. 85% lifetime risk of breast cancer never gets any less scary.
- Out of the 2 pairs of jeans I own, one of them is coming unraveled. It’s quite funny. No, not funny – sad.
I can go on. But, I won’t. That’s enough for me. For today and hopefully tomorrow.
I have tried to do these things in the past, but since I’m not a writer I don’t do them all that often. I wish I was a writer, and could write eloquently and express the things in my heart. I usually just mush everything and end up writing the way I speak. #fail
Anyway, I saw the prompt for today and it resonated with me. Time to pick it up and be the Blogger I only dream about! 🙂
For years after diagnosis, I resisted everything. I don’t have brain tumors. I don’t have a rare hereditary cancer syndrome. I don’t have to go to the doctor all the time. I’m not high-risk for breast cancer. These brain tumors will not grow. Resist. Resist. Resist.
Only today, almost 6 years after diagnosis, am I starting to get a glimpse of acceptance. Resistance is futile. Especially when you have a sketchy medical status. I can no longer resist what is.
I have 2 brain tumors. I have Cowden Syndrome. Resisting the reality of that is a recipe for disaster. My life has been a disaster and continues so.
Today, I tell you I will try harder. I will do better. I will stop resisting.