I’ve said this before. Cowden Syndrome (and for me, Lhermitte-duclos Disease) keeps you very busy. Busy with medical appointments with your entire team of doctors, constant screenings to make sure that if you do get cancer, it’s caught very, very, early. I get it. I don’t like it. But, I get it. (And I know I used too many commas in that sentence, but I’m over it.)
I need to be thankful. Dr. L said last week, “Looks like most everyone has their hands in you.” That may sound super gross (baha), she said that in response to my colonoscopy consult in a few weeks; my brain MRI that is in the process of getting approved/scheduled; I just saw my primary doctor last week; she and I reviewed my mammo results…and that’s only August! (Whew!)
While I get super frustrated that my life is no longer what it was July 17, 2011, (read: What I WANTED it to be) I am truly grateful that I have medical coverage and there are many doctors who are watching me. My anxiety kicks in all too often because I know that all my doctors have other patients on their case load, and (most likely) I am the only person with a rare disease, and let’s be honest. Rare Disease stuff isn’t the norm. Cowden Syndrome isn’t a cough, and Lhermitte-duclos Disease isn’t a broken leg. These 2 syndromes have their own agenda most days. And, there’s not enough data for anyone to look back on and say, “Oh. Let’s see Heather. Gangliocytomas grow about 1/2 mm. every 3 years.” There’s none of that. So. Life moves on.
Anyway. Last week I saw Dr. L (the oncologist) to follow up on the mammogram from a few weeks ago. I always breathe a sigh of relief when I do not receive a phone call from her in between my mammo and her appointment. Thankfully, this go-around didn’t disappoint. She and I have a nice routine in play. While I alternate every 6 months between breast MRI/mammogram (to manage my breast cancer lifetime risk of 85%), I see her the other 6 months for an office visit and clinical breast exam (so, basically I’m getting my Dairy Queens checked somewhere/somehow every 3 months or so.) This routine does help lessen my anxiety quite a bit. And, to be honest, I go back and forth between recalling that I have no family history of breast cancer (!). Shouldn’t this account for something? Anything? With my PTEN gene? Or any of my freaking genes?
I don’t know. I don’t know anything. What I do know is that our lives are filled with busy. Busy-here. Busy-there. It just so happens that I have two more layers of busy on mine with life with Lhermitte-duclos Disease and Cowden Syndrome. I do have a smart phone. I am learning to rely on it more. I’m learning the Cloud more, errrr, kinda. I don’t get it still, but I’m trying. I’m trying to get help where I can. Whereas, this Rare Disease road I must walk on alone, I’m thankful there are those of you who choose to walk with me. I cannot force anyone to walk with me, I learned that the hard way a few years ago. So, I am more thankful for those of you who willingly come with me. Those who want to learn. Those who ask. Those who are scared of brain tumors and rare, genetic conditions, but who connect with me nonetheless.
I know I am NOT Lhermitte-duclos Disease and Cowden Syndrome, those are just 2 things my body has. But trying to find my place in the world, adapting to these huge life changes, has been really bumpy. Bumps suck. I’ve also learned that you go over bumps. And then the road is smooth again, if even for a short time.