Wednesday, September 09, 2015

Just Keep Swimming...

So obviously I still suck at this but I'm trying. Life seems to keep running full steam ahead and I'm forever trying to catch up.

In January I finally had my first appointment with an Oncologist, Dr F. I have felt from the beginning of all this that I should have had an Oncologist even if they couldn't do anything for the cancer or it wasn't at a point where more surgery was needed. A doctor I had previously didn't think I needed one but my new Endocrinologist said it's something she considers mandatory for all her patients with MTC. I have to admit, I feel better having an Onc even if it's just for a once a year checkup visit. You never know when things might go south and I'd rather not have to worry about finding someone during that time.

Anyway- love the Oncologist and I have a full team now of nothing but female doctors which makes me very happy. As I've previously posted, I have not had good luck with male doctors in the past (except the PA who originally found my cancer, of course) as one was a complete asshole piece of shit (the first rheumatologist) and another almost killed me. I like and feel comfortable with all my doctors making one less stressor in my life.

So findings at the Oncologist were that my calcitonin levels have risen again. Not a lot but it's definitely back on the rise. I also found out that the "tumors" I was told I had in my lungs several years ago are NOT tumors but scar tissue from my old bouts with bronchitis and pneumonia as well as from my asthma issues. So that is a HUGE weight off my shoulders. I also don't have cancer in my neck which is also good but we have no clue where the cancer is exactly and that is bad. I think I would rather know where it is than not because then my thoughts instantly go to the bones and I stress myself. We're watching and waiting at this point so just appointments every six months, testing, and following up.

My Neurologist also sent me to see a Cardiologist and had tests run because my dizziness has been getting quite a bit worse over the last year. I'm happy to say that tests showed my heart is nice and healthy so no worries there. They also helped us pin down what IS wrong and that I've had what's called Postural Orthorstatic Tachycardia Syndrome aka POTS for several years. So many of my symptoms over the years now make sense and while having yet another diagnosis sucks, I'm glad to now know so I'm can learn about it and be able to better battle it.

Friday, January 23, 2015

Remembering This Blog's Purpose

I know I haven't posted in forever and I'm sorry. My brain kept telling me that there was no reason to post since things never really get better but recently I was reminded why I started this blog. I started it because when I Googled "MEN2a" in hopes of finding someone who could help me understand all this, I came up empty. There were no blogs for people like us and that leaves you feeling pretty lonely. Right then I decided that no one else would ever have to feel that way because I would be here.

Sadly there still aren't any MEN2a blogs that I could find and its been 10 years. Earlier this month though I was shown once again why me doing this is important. Everytime I get an email from one of you I realize all over again that this is important. So thank you KELLY for being the one to remind me this time.

I will do better in the future and I am here for all of you with MEN2a, medullary thyroid cancer, Pheochromocytomas, neuropathy, and all the other crap, crud, and junk that comes with this. I will help you through this as best as I can.

You are not alone