The new normal… that is normal AFTER the Cowden’s Syndrome diagnosis, revolves around living life 6 months at a time.
On Wednesday I got word that I can keep my spleen for at least 6 more months.
On Friday, we got the anxiously awaited news that Meghan‘s thyroid biopsy was benign. We return for another scan in 6 months.
There is 6 months in between visits to the vascular surgeon. 6 months in between the endocrine surgeon, the dermatologist, the rheumatologist, and the general surgeon too. There are more, so many more, but you get the idea.
See you in 6 months. So we can do it all again.
I am trying to slow down. Instead of waiting for the next appointment, I am trying to enjoy today. I am trying to silence the giant stopwatch in the back of my head, ticking time away until the next appointment.
Truth is if I don’t pull the battery out of that thing, I may lose my mind!
It’s not all neat and clean, this whole Cowden’s mess. Although when I stop to think about it, it is readily apparent that life is far from neat and clean.
Reality is that life is complicated.
Life carries with it no guarantees.
Life is what you make of it.
The struggle for everyone is different. Mine is a struggle with my mind.
Beating Cowden’s is not like training for a sprint. Nope. We are training for a hilly marathon in the snow. We have to build the endurance – and find a way to enjoy the training. Even the really painful ones.
See, if it was just me suffering – it would be easier. But it’s not. And truth be told, having my kid ask me every night last week if I found out yet “Do I have cancer, Mom?” Well, that was downright exhausting, I am NOT looking forward to doing it again, in 6 months, or ever. But, reality tells me there will be more biopsies on the horizon.
So we spent the weekend visiting with some family, dusting off a few things that hadn’t been tended to, finally opening some Emails, and important documents about the new car (a few weeks late) and just trying to readjust… to down shift from acute worry into chronic worry.
Well, that isn’t actually the goal. The goal is for me to shelf the worry altogether… but baby steps please.
Ironic that I am currently the thinnest I have ever been, and in the worst shape of my life – simultaneously. I fell on Saturday. Over the dog. She was on the sheets on the basement floor that were waiting to be washed. I ended up on the floor, my knee and wrist banged up, and my back in spasms reminiscent of the car accident.
My calendar tells me we have about 5 weeks until the next major doctor cycle. Good thing. I need a chiropractor to help me move. and I need a few days without other appointments in order to get there.
The 6 month thing… well that’s not just twice a year. That would be neat and clean. No, the 6 month thing seems to just be ongoing. We try to make the breaks as long as possible. You know, so in between we can deal with the new adventures life tosses our way.
I am going to focus, and keep trying to get this one day at a time thing down. I am going to stop and look around more. I am going to try to enjoy the ride. It won’t be easy. But I am on it. I promise.
I need a new pair of sneakers for this marathon training.
Who knows, I might just get back in shape yet!
6 thoughts on ““The Six Month Leash””
Interesting post – at the perfect time for me. After being diagnosed with Cowden’s in April – as I came off of 6 wk sick leave from having most of my colon removed – I gave up on doctor visits during November and December. It was just too hard & stressful to plan & execute & enjoy (?) the holidays with doctor’s visits mixed in. One of my 2013 resolutions was to schedule everything after Jan 1. I’m trying to stuff all the rechecks into a month so I can concentrate on other things for the other 10 months. So far, not so successful – doctors are booked – and my appointments are spread between Jan & Feb. I continue to wish you and your daughter the best.
It seems like such a great idea, right? Just give up 2 weeks a year and be done. But nothing is that neat and clean. I cluster what I can… and try to muddle through the rest. Good luck with yours!
You’re right – nothing is neat and clean. My scheduling is just after the holidays, but the appointments stretch out for 2 months. Maybe I’ll get better at managing all of this. Have a good day!
I understand and I feel for you. Just wanted to let you know I did start the blog and posted. I thanked Heather and wanted to thank you and Meghan. It was great to find you guys one night when I was bored. You understand because you live it too. Ok so whatsupcowden.wordpress.com posted about 5 minutes ago, with your encouragement. Thanks!
Yay! I just commented too Tami….! We are strong together. ❤
Already found it, posted and linked it to my main page. Good luck!