*NOTE: This is a venting post.*
Sometimes, I get really bugged that I have Cowden’s Syndrome.
And, what makes it worse is when it takes over a month to see the dermatologist. I get that it’s a specialty office or whatever, but this isn’t a regular run-of-the-mill thing I am dealing with.
So, if you didn’t know – Cowden’s Syndrome is a beast sometimes.
And, I get ticked off when Dr. L’s office staff treats me like crap. The good thing (or bad?) is that technically these employees aren’t really HIS staff. He just has to work with them. Rest assured I am going to tell Dr. L how 2 of the employee’s there were treating me.
I don’t care for it and it’s not going to fly.
While I’m managing brain tumors (Lhermitte-duclos disease) and the many cancers I’m at risk for, I ALSO can get trichilemmomas. (Hindsight is also 20/20 and while I have pondered about this before…I used to have tons of skin tags. Can you imagine if one of my doctors then would have connected skin tags and thyroid cancer/goiter? BEFORE the brain tumor had gotten to 5 cm?)
In the Fall of 2011 I got a trichilemmoma (or let’s just call it a skin tag for argument sake) right on my scalp at my hair-line. Thankfully I was just getting into all the doctors on my “team” and Dr. L was smooth like butta (hah!) and removed it, popped in a few stitches, and I was good to go in no time. 🙂
Cut to about 6 weeks ago…
I noticed I started to get another one. In almost the EXACT same spot. I called Dr. L’s office right away. How many EFFING HOOPS DID I HAVE TO JUMP THROUGH you ask? Since I’ve been established with him you’re going to tell me it was again smooth like butta to get me an appointment and all was unicorns and rainbows, right?
“N”, his so-called assistant, made me get a referral. Then proceeded to tell me he was booked until October something. Garbage. I told him, “I HAVE A GENETIC CONDITION AND CANNOT WAIT UNTIL OCTOBER.” Oh and during all this did I mention that his “staff” didn’t call me back for 3+ days?
After way too freaking long “N” makes me an appointment for next week.
Now, cut to today…
(Oh, and by the by – this “thing” on my scalp is continuing to grow. Did I mention that your PTEN gene is your tumor suppressor gene? And if your gene has a mutation you might just continue to grow things?! THAT SHOULD NOT BE THERE!)
I called Dr. L’s office on a whim and guess what? He had a cancellation appointment for tomorrow morning! Of course I’m going there first thing in the morning but you know what else? “N” didn’t make my appointment for a procedure. He made an EFFING 15 MINUTE CONSULTATION APPOINTMENT. WHEN I TOLD HIM NUMEROUS TIMES THAT I NEED TO HAVE SOMETHING REMOVED BECAUSE IT IS GROWING BIGGER.
[Dear Readers: When I started this blog over 2 years ago, my purpose was to update my friends and family about the brain tumor and surgery. Now, it’s turned to so much more. Life with Cowden’s Syndrome is sometimes wrought with frustration and anger for me. This part of the Internet I own is to give value to my voice and share that tonight I’m mad. I’m mad that Cowden’s Syndrome has invaded my life in such a perverse and evil way. EFF you Cowden’s.]