Back to square one


Me is back to hear results

The call I waited 9 days for came in yesterday and … the result is, I don’t have Carney complex. So, that’s one less thing that could have caused my heart tumour. My next scans take place in January, so we’ll see what, if any, changes my heart and my brain have gone through and go from there.

My entire family let out a sigh of cautious relief. Cautious because my doctor still recommends that they get an echocardiogram regularly . It’s amazing to me, that only 750ish people have been diagnosed with the disease since it was discovered in 1985. And that’s in the entire world!

So with the new brain scans, we’re looking for growth of and /or new aneurysms . If they show growth, they’re likely myxomatous aneurysms, like my first neurologist originally thought, and I still believe. I’m not sure what it means if there are more aneurysms, but I’m sure I won’t like it.

I’ve been getting bad headaches again, they were debilitating for about a week, a couple of weeks ago.

Lately, while walking the tiled hallway outside my condo, the caulk that outlines the tiles moves, not actually, it’s just the way my eyes see it. It’s almost like I’m under water.

It doesn’t get better from here. Just because something is benign doesn’t mean it can’t kill you, it’ll just do it slowly. The stress might kill me faster than the cerebral aneurysms!

Drumroll please …


So, today I got a phone call from the cancer agency telling me that my test results have come in. If you recall, I had my blood taken to test for Carney complex, a genetic disease that could explain why I had the myxoma tumor in my heart and why I currently have at least 5 aneurysms in my brain. And here’s what she told me … The medical oncologist will be calling me with those results on Thursday the 25th .

End drumroll. Begin countdown at 9 days.

Me back in 9 days!

Explaining a stroke to a five year old


Recently, my nephew asked me what was wrong with me. His mother had been telling him that my instructions got hurt. I went on to say that your brain is like a computer full of instructions for everything that your body does and when your brain gets hurt some of those instructions get damaged and the brain has to find new ways to access the body parts that aren’t working, and the brain takes a very long time to find them.

Depending on how much damage to the brain there was, you can have a full recovery, or you might just partly recover? That’s why I try to exercise my brain as much as possible.

It’s important to keep learning so your brain will be nice and strong and tough to damage.

He went outside to think, and about 15 minutes later he came back and said that he’s sorry my instructions got damaged.