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.
“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.
Part of me feels like I inhabit only doctor offices and hospital rooms. Because Rare Disease. (A virtual contact of mine said today, “It kind of feels like you’re going to the mechanic.”)
In actuality though I have my room; my own private escape from all things medical. What can I do to make it more mine: I have dark curtains and a few stuffed animals and books. Always books. But that’s it. I want to make it more homey, inviting, etc.
PS – Please check out my Teespring storefront while you are here. Thank you! ❤
What else would you recommend for me? EDIT: This photo is from the Internet. Not my room but I love this! 😉
Am I the only one who saw “hospital” first? No? OK, then.
I laugh that I draw that conclusion. But, you can’t blame me. Out of all my hospital stays, many of them weren’t very hospitable. I felt no hospitality whatsoever. 🙂
I could write stories of my experiences, and in fact I have many times.
One of my (many) wishes would be to talk to every JERKY nurse, doctor, technician I have come across since diagnosis and
give them a piece of my mind, tell them off, sincerely ask them why they are in the medical field. If you don’t have one ounce of compassion in your soul, DO A DIFFERENT JOB!
There are some weeks where I don’t have to deal with, or address, anything Cowden Syndrome related. What a nice breather!
Then, there are other weeks (months) where I feel bombarded with medical appointments, issues, screenings, tests, hospital visits, and I feel overwhelmed and alone.
Three guesses as to where I am today.
Alas, I don’t have the luxury to sit home and stew. I have to put on my big-girl underwear and deal.
Dear Readers: What do you do to get yourself over a slump? Any suggestions that work for you? As the meme says, I guess I need to “Put on some gansta rap and handle it.”
I’m so frustrated right now.
I am getting plagued again with headaches.
I wake up with one, I go to bed with one.
And these aren’t mamsy pamsy headaches either.
These are on par with the post- craniotomy ones I got years ago. Like when I was admitted to the hospital for the 3rd time.
Last night I had to take some Norco, the pain was that bad.
But the pain finally started to subside after a bit and I got ready for bed. I tried to set my intentions for today: I prayed, did some light stretching, put on some vitamin E for my eye wrinkles (LOL) and was looking forward to church this morning.
Cue the gasp. I woke up with a terrible headache.
I am emotionally exhausted.
Is this all I have to look forward to? Life with constant headaches? I demand some relief because I’m way overdue. Period.
I have had some very vivid dreams lately. And they aren’t pleasant, either.
I probably should keep a dream diary, but I always think of things like that after that fact when it’s too late.
Last night I dreamt I saw a new doctor; she was female, short grey hair. I had not seen her before, didn’t know her name or anything. It was a referral for brain stuff, yet she told me she recommended me for the esophagectomy and I needed to call the surgeon as soon as possible.
I remember running after her in a hospital and asking her about my head. She didn’t even want to discuss it. Very dismissive.
Isn’t that weird? What is my subconscious telling me? I haven’t heard anything from the surgical department, so I know that nothing has been approved yet. And although I’m having a lot of symptoms and I am
dreading trying to be at peace for whatever comes next. I don’t really think I have freaked out, and for sure I am not thinking about my esophagus before I go to bed at night. If I think about anything Cowden Syndrome related before I go to bed at night it’s usually my Dairy Queens. Or my balance and vertigo (which vertigo is happening again, but how do I bring it up to PT?)
I remember months ago I had a dream where I got stung by some type of insect or something. I knew I had to remove the “poison” from my arm (Ew. I’m getting chills right now just remembering the dream) and as I did so it was long, thin, stick-like. And, the biggest thing I noticed is that as I kept pulling it out, it wouldn’t stop. It kept coming and coming and coming and coming. It was one of the weirdest dreams I’ve ever experienced.
Anyone have experience interpreting dreams?
Some weeks are Cowden Syndrome and Lhermitte-duclos-free. Other weeks I am slammed with several appointments all in a row and I’m reminded that my life is different and this is my new normal. I think it is a tad easier to accept these things that I do not like. Maybe I’m getting tired? Or stronger? Or maybe it’s that I have realized that in this “new normal” there are other things I can focus my energy on? (Volunteering at the animal shelter?)
I haven’t yet written about what happened at the breast MRI appointment; I’m embarrassed to say the least. Suffice to say I didn’t get the scan as I needed to. So, my poor oncologist has been forced to find another option for me to check my Dairy Queens in the meantime, so that we “don’t miss anything”. (Quotes added but inferred by both she and I.) Tomorrow I have a mammogram and then if need be, followed immediately by a breast ultrasound. Let’s hope, as always, for NO WHAMMIES and big money…I have had the ultrasound before and it’s not. fun. But, we’ll see. We will see. Whatever it is it is. I’m not nonchalant about breast cancer or the possibility of it, but I just realize that I have to do all these things. I have to go to the doctor, go to the hospital. go here and go there because “they” want to make sure I am being watched closely. THAT, I get. And, I’m thankful for. Doesn’t make it any easier, it just is what it is. Does this sound like growth? HA!
Friday I have a brain scan and then the appointment with the oncologist. I have noticed that I don’t seem to be as dizzy lately, which is interesting because we had to decrease the Topamax because of the side effects I was experiencing. But I have noticed something that is concerning, but nothing I can do about this either: I don’t really struggle when I am talking to someone, maybe every once in a while maybe I will switch a word or two but nothing too big. Getting the information out of my brain in one direction is OK. But what HAS been a problem as of late is when I have to do that in several steps. Meaning: When I am subbing or teaching or reading something…getting and processing information from Point A, then to my brain, then OUT of my mouth in coherent words is hard. Frustrating, difficult, confusing, not easy. And, plain ‘ole not fun. I noticed this last month when I was at church. I powered through, because there is no other option, but man it was harder than I wanted it to be!
Isn’t that how most of feel at times about life? That it is harder than we want it to be? Sure, I don’t want brain tumors and high breast cancer risks. I would rather be carrying my Fossil bag at Disney World enjoying the park! 🙂 But, I’m not. I’m navigating slowly this rare disease life. It’s much harder than I want it to be, but if I wasn’t on this road, I would not have met the people that I have. I wouldn’t have this blog, either. I realized that’s kind of a big deal, too.
I brought my mom to my neurology appointment this morning. Moral support I guess. But mainly I wanted another set of ears in the room with me, because, let’s face it. Brain stuff is hard for me.
I like this doctor a lot. I met him during the 3rd hospital stay when they were trying to figure out what was causing my horrific headache after the 2nd surgery (hello?! Is this thing ON?!) Anyway, when he called me last month he told me I had an “abnormal EEG”, but this morning he seemed to tell me different information. So, short-term I guess that’s GOOD, but here’s what I gathered from the EEG results:
Just because I didn’t have a seizure during the 30 minutes I was being tested, doesn’t mean I won’t possibly have one sometime in the future.
He said I have “brain irritation”, and yep. He’s right. I’m irritated so I’m sure my brain must be, too, haha. I had to come clean that I wasn’t taking the anti-seizure medication consistently as he asked me to last month; and since we don’t really know what’s going on with my cerebellum, he increased the Topamax even more. The thing that bugs me is that I haven’t ever known life post-surgery without Topamax or Gabapentin, and eventually (hopefully!) I would love to see how my brain does not on those medicines. But, as time goes on, I’m thinking that’s off the table. 😦
You know how they say, “Accept the past”, or “Let the past go”, blah blah….well, no one actually says HOW TO DO THAT. I’m just expected to know how to do this brain tumor stuff and let’s face it, I don’t do it well. My lack of balance and (I’m now noticing) motor control AND ringing in my ears is starting to really take a toll on me. Yes. I can walk and talk. I am so thankful for that. Very thankful. But it’s still really hard. I’m on this road alone and it’s very overwhelming most days.