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!
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 .
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.
In my life I’ve been lucky enough to see pairings of some of my favorite people creating projects that may as well have been called this was made for YOU! The first time this happened was in 2008, my favorite director of all time, Martin Scorsese, decided to take a documentarian look at my favorite band of all time, The Rolling Stones, in the film Shine a light. Not only was this the movie I’d been waiting to see since I was 11 (1976) and fell hard for Mick Jagger, but since 1990 , when Scorsese’s Goodfellas , the true story of Henry Hill, hit theatres. I’ve seen that film at least 20 times and there is not one frame that I’m not in awe of. Putting rock genius together with film genius to make a movie that I can’t find fault with. It’s the perfect blend of behind the scenes footage of the band and the best photography of a stage performance I’ve ever seen. It’s also a pairing where I don’t know who I’m more jealous of, Martin Scorsese or Mick Jagger. Oh to be the fly on the wall of this friendship. I’ve never been so creatively fulfilled.
It’s currently happening again. My favorite female singer /actress, Cher, who i have wanted to be since I was 6 years old, teamed up with my favorite European disco band, Abba, for an album of covers of their hits called Dancing Queen, and a tour titled Here we go again. Just the good natured fun I need desperately right about now. Unfortunately for me the tour doesn’t get close enough to where I live for me to go, I would have to either take a 5 hour fight across Canada, or go to the States, which isn’t going to happen. Even if she was coming to Vancouver, it’s a 2 hour ferry ride, and a hotel stay of 2 nights. Why 2 nights? I have to have a day to rest after a travel day because my brain becomes overwhelmed with information and I become exhausted. Stupid stroke! Stupid cerebral aneurysms!
Thankfully there is the Internet, so my greedy ass is asking for a little help. Greedy because I’ve seen the movie, will buy the album and have actually seen Cher live once, back in the 1990s. But I crave more.
If you or someone you know is going to be in the audience, try to put up a clip for me .
After seeing specialists last month, I have one more medical test at the end of the month that should put to bed a disagreement between my neurologists. One neurologist thinks that the aneurysms are myxomatous, meaning they behave like myxoma tumors, and the other thinks that I have a rare genetic disease called Carney complex,
which would explain why I have had so many cysts. A test at month’s end will tell me if I have a mutated gene causing the disease. I’ve had doctors and family members question why I want to know if I have something there’s no cure for, as I don’t have kids, but I do have a niece and nephew, and if I do have it, there’s a possibility that they may have it. And that is important that their doctors know so a heart tumour gets seen early before causing a stroke. Seriously, if I could have had the tumour removed before the stroke, I would have been home 10 days after surgery and been fine. If my DNA has an answer, I think it’s well worth finding out.
As for treatment, all 3 specialists prefer no treatment, so far. And I completely agree.
So, as to the question posed in the title of the post … only freaking out a little bit.
I still have headaches, my vision is acting up, it’s become difficult to read, the words seem to jump off the page . As much as I love reading, it’s become exhausting. Ironically, I just started the newest work from Christopher Moore, called Noir and I’m not far into it. I’ve read the first page about 20 times, but can’t seem to get past that without eye strain. Before you ask, I am wearing brand new reading glasses.
The vision issue is why it’s taken so long to post this, as it’s more difficult to read from the screen than the book.
This year my parents cat, Mittens turns 5 in human years.
As does my relationship with my husband.
As well as my adorable little niece.
As of this week 5 is the number of aneurysms in my brain. Yes, there are 2 new myxomatous aneurysms. Well either they’re new or they were missed before. The good news is that they’re tiny spots. The bad news is that they’re all in different spots adjacent to different blood vessels. What I still don’t know is if in fact they’re growing how quickly? The neurosurgeon says that he doesn’t want to crack open my skull, and neither do I. It was really good for me to finally get to look at my brain scans. Every one of them from the first at the time of the stroke, in 2015 to the one this year in March when my brain was bleeding. For a small bleed there was quite a bit of blood. Then finally the last one which shows all 5 of the suckers.
The newbies are unfortunately on the left side of my brain, where they can potentially cause the same type of weakness, I am experiencing on the affected left side. just on the good side of my body, also 1 is in the area that deals with speech. The other 3 are in spots, like the last bleed that, if they bleed there shouldn’t be much difference in my abilities. It was just lucky timing that we caught the bleed.
Wow, I lost a lot of blood in this post. As to the question about the aneurysms growing, the neurosurgeon thinks that I shouldn’t get too many scans, because it may cause me stress. Like I’m a delicate flower, please! Next update at some point after the 20th and conversations with 2 oncologists.