Yesterday we had a quick telehealth appointment to review my results of my colonoscopy and EGD. And, I say quick – as you couldn’t get me off the phone fast enough.
What gives? What’s your problem? I don’t appreciate your rudeness. I want to chalk it up to you just having a bad day, but was that it? It sounded like you were in your kitchen making lunch. OK, whatevs. I can deal with that. But, what I’m pissed off about is that you blew me off. The faster you talk to me, the harder it is for me to process. I took notes. I asked questions. But, you said we were going in circles, YET WE WERE NOT.
You have no idea how hard it is to manage life on life’s terms living with Cowden Syndrome and Lhermitte-duclos Disease. You were one of the few doctors on my team that I respected and trusted. And, let’s face it: you sucked yesterday. Not cool, doctor. Not cool. I get that you’re a specialist, and all that. But, I don’t care for how you treated me yesterday. In the past several years I’ve worked with you, you’ve never been this callous to me. Don’t do it again.
Thank you for coming to my Ted Talk.
Oh my! Have I really not been here since April? How the heck are you doing?!
OK. So, where do I begin?
1). Had my colonoscopy and EGD this past week. No fun. Not one ounce of fun was had by anyone there. I know there were biopsies removed from my colon and esophagus; and I still wait. I do recall my GI doctor saying to me more than once, “I am really worried about your esophagus”. Well, isn’t that swell.
2). Saw Dermatology this week, also. Not as eventful but still so grateful to check it off the list.
I have some other exciting news to share but I will do that in another post. How are you doing? What’s new? How’s your family? 🙂
In other news: Did I miss a huge change in WordPress? I can’t edit posts like I used to? This is really difficult to navigate and sadly might make my decision for me in retiring the blog. This is so frustrating. What am I missing? I have tried to edit this post (typos) for the last 10 minutes with no resolution. What I ended up deleting, because I couldn’t fix the typos, was CAN YOU BELIEVE THAT NEXT MONTH IS OUR 10 YEAR ANNIVERSARY?!
Hey guys. It’s been a long while but I’m still here. I think, naively of course, that since I have now “graduated” to brain scans every 2 years, I am home free! Of course, that’s not true and in just a month or so time it’s time for my colonoscopy and EGD. Which, if you remember from previous posts, they suck balls.
I am focusing on a lot of self-care lately, which has included hot baths, books, and short “staycations” with my Mom. Talk soon! ❤
My diagnosis of Lhermitte-duclos Disease and then Cowden Syndrome disrupted my life so completely that even 7 years later I am still reeling. Trying to find my balance and inner strength.
I am so very thankful to have gotten through these last few months relatively unscathed. 🙂 The EGD and colonoscopy was rough, but completed. And then breast MRI was “easier” than I remembered! The only negative thing I immediately noticed is my shoulders were very sore (you lay on your stomach with your arms stretched overhead). Awkward doesn’t even begin to cover it.
Also, I haven’t received a telephone call from my oncologist. I breathe a huge sigh of relief from that as I know from experience I would have gotten an immediate call had there been an issue or concern.
Today I have errands to run, appointments to complete, and blood to be drawn from my arm. I best get going and I hope you all have a great day today!
Hi everyone: I made it through the colonoscopy and EGD! It was a rough time; I’ll be very honest. So glad it’s over and now can move on to the next appointment on my calendar.
The GI doctor (whom I love!) biopsied 4 polyps in my colon and told my mom that my esophagus looked even BETTER than before! You may recall that my esophagus is “carpeted” with polyps and a few years ago I was referred to a specialist as there was talk about an esophagectomy at some point. You can read about that fun time here.
I’ll take this news as a small win and will be in touch soon. ❤
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.
He has been on my mind today.
Did I ever tell you that before my dad went on his mission he was interviewed by President Hinckley?!
There’s a quote that always reminds me of him – “Forget yourself and go to work.”
Here’s the back story of that quote if you’d like to read it. 🙂
So, that’s what I did today! I (tried) to forget myself and went to work.
Yesterday I had the consult with the GI doctor regarding my next colonoscopy and EGD. I’m not looking forward to it to be completely honest. I also got a call from the pharmacy yesterday that my insurance doesn’t cover the prep and my co-pay is $100.
Yah, that’s not happening.
I made some calls this morning about another option for the prep and then spent all morning searching online. Searching for “work from home” jobs (legit ones, obvi) and any other “side hustle” jobs out in the world. (Could I drive for Uber Eats? Or Go Puff?)
Suuuuuuure I could. If there were any available.
My point being this: I had a very rough day yesterday, ending with the doctor appointment which always brings up my PTSD, etc. I slept relatively well last night and got up today and tried to be productive.
Granted, nothing developed from my searching. But at least Heavenly Father saw that today I was trying. I really tried hard. And, even felt “good” to boot. 🙂 so here’s to another good day tomorrow! 🙏🏻
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….
Wow. I can’t believe this month is already 1/2 over! That’s so crazy.
I was looking at my calendar this morning and was a bit overwhelmed with all I have going on:
- Colonoscopy and EGD
- New therapist appointment
- Endocrinologist appointment the end of the month
- I had 2 different Neurology appointments scheduled, and they both fell through. (It’s mildly concerning to me since I am living with 2 brain tumors and have had 2 craniotomies. But, I digress. For another post.)
I guess my point is that I’ve been forced to learn how to advocate for my health. And, that’s one of my biggest takeaways since diagnosis of the brain tumors. I get to share my experiences with you, and hopefully at least 1 thing I’ve experienced these last 5 years may be of some help to you. To someone. Somewhere. That helps me feel that none of my medical experiences have been for naught.
I could tell you horror stories, and rest assured, I will continue to share them. (Gross negligence of privacy issues to start.)
But, not tonight. I am still traumatized from the colonoscopy and EGD last week. I’m still irate for not being able to see a neurologist. However, the main thing is even though I must endure numerous screenings and procedures (and those aren’t going away any time soon), I will not tolerate unacceptable behavior. I will not waste my time waiting in exam rooms for doctors who don’t listen to me. This is my life, this is my health; if you’re not meeting my medical needs, I refuse to endure and I will move on.
I never would have done that in my previous life. I would have just gone along with things, because I had to. Well, you know what? I don’t have to do anything. I don’t have to do anything I don’t want to do. Has the diagnosis of Cowden Syndrome and Lhermitte-duclos Disease made me stronger?