Are you a big TV watcher? What was your favorite TV show of the last few decades? Charlie’s Angels? Silver Spoons? Friends? Over the years my family and I have gone to see several TV show tapings. Quite fun! Being in the audience, feeling the energy of the crowd, there’s nothing quite like it. (I used to say, if I had it to do over again, I would have studied TV/Film in college because I would have LOVED to work in that industry. That stuff just fascinates me. I always call it “Organized Chaos” because to the layperson it looks like tons of people are just standing around doing nothing. But, I know that each and every one of them have a specific job they are doing at each moment.
One of my favorite shows in the 1980’s was this show. And while I don’t remember exactly what year I was there (1988?) – the show we were watching was a milestone for them. I think the 100th show possibly. The Audience Guy (my term; it’s not the correct one) was giving away stuff to audience members (t-shirts, etc.) and one of the things he was giving away was a cue card. I WAS IN! The only thing I had to do was go down to the front (not on the set but where we were sitting) and sing “Jeremiah was a bull frog”.
Did you catch what I did there?
While this isn’t fun, it is a fact and it is Friday.
Three years ago today I heard the words that forever changed the direction [I thought] my life was on.
“There’s something there.”
So today is Heather Day. Just me. The entire day.
I write to understand myself better. I write to understand Cowden’s Syndrome, and Lhermitte-duclos Disease better. Some, if not most of it, isn’t pretty. I don’t want to censor myself here. On my blog. The place that I have to be me and can be open and honest about everything that is in my heart. I use this blog as a journal so that I can look back on things to see growth and change (for the better, is always my goal).
With that all being said, I’m not sure how to write about this while keeping things “clean”. Ahem. There have been about 4-5 times since the hysterectomy (December 2013) where I have found “stuff” that shouldn’t be found. (I am sure you can infer where I am going with this.) While it concerned me and unnerved me for a bit, I was so shocked that I wasn’t sure I could believe what I was seeing. But since it has happened only a handful of times in the last 7 months I knew it wasn’t a dire situation. So I let it be.
It happened again this morning. My first thought and instinct was, ” THE BAD PLACE. MUST GO THERE NOW!” But, I came back from there very quickly. Much to my happiness (and shock, actually). I reminded myself that I could count on one hand how many times this issue had occurred since December. Took some deep breaths. Knew (and felt) it was time to call the doctor; I couldn’t ignore this any longer. But, more than that. I didn’t want to ignore this any longer. I was ready to take the steps to look into this further. I think that Cowden’s Syndrome; and Lhermitte-duclos Disease has made me very gun-shy when it comes to things going “wrong” with my body. I don’t know if I was ignoring this, technically, but I guess I was self-preserving? Hoping/thinking/wishing/feeling/wanting it to eventually stop that I didn’t need to jump to the doctor as I usually do. This is very interesting to me as I’m writing this. One of the biggest anxiety factors for me presently that I am working on is I don’t want to “miss” anything in my body and get blindsided again with another 5 cm tumor in my cerebellum (or elsewhere). That makes me always on guard because I have to be ready. I will do anything and everything to catch another brain tumor. But, yet with this issue post-hysterectomy, I was content to wait it out a bit to see if it worked itself out. I think that’s growth.
Made some calls and I have an appointment scheduled in a few weeks. “Scar tissue; nothing to be overly concerned about; we will take care of this for you, doesn’t happen all the time but sometimes it does,”
I am still breathing. It is OK today.
Today’s Fun Fact is from 2007-ish; years ago I had an annual pass to Disneyland and California Adventure. (I sure miss those days. Fun, fun times.) One of my favorite rides at California Adventure is this ride. I don’t know what makes this ride so special for me. Many rides at either park are dark rides and while I do enjoy Splash Mountain with the best of you, there’s something special for me here. It’s just one of my faves.
At the end of the ride Roz watches each car as they drive up and makes pertinent remarks to the passengers in the car.
NOTE: I had long, curly dark hair back then. (You’ll see why this is important in a moment.)
That’s what I have been told. And read. And while that’s not why I initially started this blog in 2011, writing has essentially developed into another way for me to process everything now in my life. There has been something going on in my mind since last week but I haven’t had the time to sit in front of my computer to really think about it. To really process and ponder about it. To give it some thought and consideration.
Before I start that, well-meaning people tell me “You must be positive” quite often. And, while I believe that and want to be a positive person, sometimes it’s really hard. Sometimes, the weight of the pressure of life is overwhelming and I just need some “life is really scary right now” time. Last week at the ENT doctor I had a wave of the “life is really scary”.
Part of Cowden’s Syndrome is having a “cobblestone tongue”. (Google it if you need to)…and several months ago I noticed a bump on my tongue that was growing noticeably bigger. (Now, I don’t know about you. But anytime I have something going on with my body that is NOT NORMAL it causes me some angst. Cowden’s Syndrome and Lhermitte-duclos Disease now makes that angst even GREATER.)
And, it hurt. Big time. Since PTEN mutations causes me to “GROW THINGS” (ugh; gross I know) my biggest concern was that this tongue bump was on the fast track to STARDOM and was getting bigger by the moment. I talked to my primary doctor and got the necessary paperwork for the referral to the Ear, Nose, and Throat doctor.
So, last weekend happened. While I needed him to look at my tongue I also needed him to look at the inside of my cheeks because I had 2 other bumps. (Thanks a freaking lot Cowden’s Syndrome!) – This was a new doctor to my “team” and I was sort of impressed at first with him. (There was something that he needed that I wish I could have offered him. I don’t mean to be disrespectful but hey. If you’re going to be THAT close to my face can’t you please ensure you have this ONE LITTLE THING addressed prior to meeting my FACE?!) – He said that if he was to remove the bumps on my tongue we would have to go to the operating room to do so.
I don’t know why. But, it brought up so much terror and anxiety in me. Anxiety because my new motto now is, “JUST SAY NO TO SURGERY!”; but also my concern that if I wait and don’t address this bump on my tongue it will grow bigger and then what? And then surgery is more complicated? I don’t know. But, I do know this. “Cowden’s Syndrome tongue” is not pretty. You can search for pictures if you’d like but I wouldn’t really recommend it. By no means am I an involved case (thankfully) but there’s always the “what if” that I may become that. Does that make sense? He explained that the tongue is very vascular and blah, blah, blah. To be honest. I don’t remember much of what he said to me after “Operating Room”. The thought of Cowden’s Syndrome doing this to me again was just TOO MUCH FOR ME. No more surgeries for fun, for frolic, for brain tumors, for preventing uterine cancer, for bumps on my tongue. NOTHING.
Moving on, we looked at the bumps in my cheek. I have one on my upper right cheek and had another on my lower left cheek. The upper one was small last week so appeared to be a non-issue (to him), but the one on my left cheek was much larger and had a different shape. The word “stitches” was tossed out in this exam room.
Stitches in my mouth? How is that even going to work?
In past experience I know that the shot hurts more than the procedure itself, and this case wasn’t any different. After he removed the bump he said I needed 1 stitch, probably 2. And he proceeded to sew up the inside of my mouth with sutures. I was holding it together until I felt the suture against my lip and saw the suture coming out my mouth as he was tying up all the loose ends (BAHA). I got a bit woozy at that point.
The kicker is that I’m probably not immune to surgeries or medical procedures at the ripe old age of 42. Granted, 3 surgeries since 2011 is three too many in my book, but with the track record of Cowden’s Syndrome I think I have to prepare myself for what’s to come. Life is a time to prepare. I get that. And I guess I’m learning that the hard way, whether I wanted to or not.
So, this is my therapy for today. My story. My life. Me. There isn’t an opportunity for me to share this with anyone, so thank you for reading. It’s good to have this little place of the Internet where I can be me and get all of this out.
Have you heard of WEN? I don’t remember where I first heard of it, probably the Q. :) Anyway, Mom and I got on the bandwagon a few years ago and I am hooked. She’s not 110% convinced yet – but she’s getting there. By no means is this a sponsored post (hah!) but I cannot tell you how many compliments I get on my hair when I use the products. Really really.
This morning I used the Fall Apple Spice Cleansing Conditioner because I wanted a change from the Fig scent that I normally use. I love, love, love the scent (because, let’s face it. We’re almost at July; and because Fall) and went on my way. But, most of the morning I kept thinking, “It smells like Christmas. Is someone cooking something different for breakfast?” I even went so far as to smell an old candle in my room because I thought the smell was coming from that!
BAHA! It was my hair!
And Because Fall is my everything.
I have wanted to do Guest Posts here for quite a while. And, with the blessing of Twitter (yes!) I have connected with a few people also living with Cowden’s Syndrome. I asked Debbie if she was interested in sharing her story and she graciously agreed. Please meet Debbie!
Greetings, Everyone! Heather asked me to write my story and this is where I freeze! So I’m looking inward to see who I am and compare it to my outward appearance of who I want you all to see. If you’ve never read about the Spoon Theory, please do so. I am a spoonie, still with a type-A personality; an extrovert; a leader; all personalities that really came out after high school. And so as I juggle to keep all my balls in the air, I am stealing spoons from anywhere I can get my hands on them. I am a spoon thief, but you can call me Debbie.
Two years ago, at age 47, I discovered that I had Cowden’s Syndrome through genetic testing and with help from a geneticist. Immediately prior to receiving my genetic test results, I had ¾ of my colon or large intestine removed. This partial collectomy was done upon my gastroenterologist’s advice that since I had hundreds of recurring polyps each year, a partial collectomy would lessen the real estate that the polyps could grow on. I saw the logic behind that and I felt that I could live “normally” with 1 foot of colon. And I have – my “normal” has changed a bit. My favorite foods are still within reach!
With the genetic test results that said I had a PTEN mutation and Cowden’s, I was relieved. Between 2005 and 2010, I had four operations and was seriously thinking that I was a mess! (By the way, I have all my operations, dates, doctor’s names on notes that I keep with me all the time. I could never remember all these details!)
2012 – partial collectomy
2010 – oophorectomy (2 softball-sized cysts, one on each ovary)
2007-hysterectomy (fibroids similar to being 14-weeks pregnant)
2006- carpel tunnel, left hand (with fluid-filled cysts throughout my arm)
2005- total thyroidectomy (multinodular goiter, grapefruit-sized & follicular
cancer, with damaged parathyroids thrown in)
2002- carpel tunnel, right hand (with some cysts)
I so totally believe in better living through science, but people really look at me strangely when I am in a restaurant for breakfast. Over the course of a day, I take some 20 pills to create this fine, delicate balance that is my body. What I take? That could be a whole other article!
I do balance my check ups and my primary doctor loves the challenge that I am to her. She helps me keep everything organized. My gastroenterologist has seen me every year for the past 14 years, patiently clipping all my polyps and patiently suggesting I ought to have genetic testing. I was in no hurry for genetic testing – I had no children. One of my new thyroid doctors did a very thorough check up so that electronic records could be created and then told me that her professor told her she would NEVER meet someone with Cowden’s Syndrome – it’s that rare. She was extremely anxious to tell him that she found someone with Cowden’s. She had me pegged even before the test results were back. Good job, Doctor!
So I think back to high school marching band when the band mothers were fitting us for uniforms and hats and when I finally had a hat that fit, the band mother said, “my, you have a large head.” Another a-ha moment from 30+ years ago.
I risk this is getting too lengthy so I will have to promise Heather that I will chime back in soon on the rest of my story. I am not Cowden’s. I am a wife, doggie-mommy of a high maintenance sheltie with cancer, daughter, daughter-in-law of a mother with dementia, and a librarian with a full-time job with wonderful benefits. But it all returns to me wanting to be “normal” and being able to do all those things that I want to do.
Social media and the internet has been a blessing to us rare souls! I’d love to talk to you! Follow me, @debbierzep, on Twitter and say hello!
Over the years, I have worked at a few bookstores and looking back, those were my most favorite jobs. Dare I say I have a tendency to hoard books? I used to, anyway. I love to be surrounded by books. Most any genre, except for true-crime. Those never caught my interest for very long. Back in the 90’s (baha!) I read mainly fiction; John Grisham was my go-to guy. But as I matured I was drawn more to non-fiction; (medical mostly) and I had a lot of thyroid books (back before we knew of Cowden’s Syndrome-anything.)
Last year I was in the middle, no, almost end of, Eat Pray Love. I took this book with me everywhere. But, I realized about 6 months ago that I lost it. I was pretty devastated, although I had seen the movie and was surrounded by tons of other books, I really wanted to finish this book and feel the books are always better than the movie. I was going to check it out from the library but I was really nervous that I would lose this one, too. :(
For the last week or so I have really been focusing on getting that book again. To make matters worse, I watched the movie again over the weekend. So, that didn’t help. I had to find this book. I was a woman on a mission!
The point of my post is YESTERDAY I FOUND IT! For $1 at my library! I couldn’t believe it. I asked the kid behind the counter if he had seen it in the “Friends of the Library” area and he said he hadn’t. But, he suggested I look in non-fiction (?) because it was probably shelved there if there was a copy.
Color me happy!
I’m very excited to share this, you guys! Please visit the link and just remember that writing is not one of my strong suits. :)
I forgot to connect Lhermitte-duclos Disease to Cowden’s Syndrome (duh!) and I forgot to mention the prophylactic hysterectomy I had December 2013. But, it’s all good. The point is that Rare Disease (genetic mutation) stuff is getting out there. Doesn’t matter by whom or when, the most important thing (to me) is that it’s OUT THERE!