Waking up before the rest of my family on a vacation day – 2 cups of caffeine.

Filling the car with gas- $50.

Traveling through the Brooklyn Battery Tunnel $13 roundtrip.

Parking for 4 hours – $25.

Two doctor Copays $20 each.

Trip across the Verazanno Bridge… about $6 with my EZpass.

But, the news from the dermatologist that I can stretch the visits a whole year, combined with the news from the breast surgeon that “everything looks great and I will see you in 6 months!”



So we cross small hurdles gleefully.

We had 7 appointments carefully scheduled for this week to avoid time off from work/school.  Three doctors apparently realized last week they have kids at home and cancelled.  So this concise week of appointments will stretch a bit, but I have begun scheduling the 11 doctors and 4 scans I can remember that are due in June/July.

I will do everything in my power to consolidate them.

Cowden’s Syndrome WILL NOT run our lives.

We are actively preparing for RARE DISEASE DAY…. (FEBRUARY 28th – Get your denim ready!)

denim ribbonsUntil Friday when we see the vascular surgeon about that pesky AVM…


4 thoughts on “Priceless!

    1. “Wear that you care” denim ribbon stickers from the Global Genes Project. It is the image that was used to create our necklaces. It is a pair of jeans crafted into a ribbon. “Hope it’s in our genes!”

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