Twice in a lifetime

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 .

How am I doing?

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.

Hoping for an audio book!

The irony of the number 5

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.

Birthdays and doctors and death, oh my

This month is celebratory. It includes 5 birthdays, starting with my country’s 15 1st. Then it’s my hubby’s 52nd on the 7th , my 53rd on the 16th, my mom’s 76th on the 23rd and finally Mick Jagger has his 75th on the 26th. I’ve been raising a glass to his birthday since I was old enough to drink.

Canada day fireworks

This month is scary. It includes 3 new doctor appointments , all of which are consultations. So get to listen to what they would like to put me through. First up, on the 10th is a neuro surgeon, not the one who said that I didn’t need surgery, a new one who likely has something he’d like to throw against the wall and see if it sticks. Then, on the 20th even though I don’t have brain cancer, a neuro oncologist and a medical oncologist,who have their own opinions on how to rid my brain of the at least 3 myxomatous aneurysms that are currently growing, slowly in it. I’m sure to have lots to think about and decisions to be made.

This month is sad. On the 11th, I see my family doctor to have the end of life discussion. It’s not too early and that’s the sad part. Maybe, Sir Micks birthday will cheer me up.

Myxomatous cerebral aneurysms delayed complications of stroke

Photo of my right eye, notice the discoloration at the top.


Is there a doctor out there who can give me any information about this disease. Including theories of what may have caused the initial benign right side atrial myxoma that caused the stroke in the first place. It seems that the piece of myxoma tumor is causing my brain cells to behave like tumor cells. I’ve already had some cells cause a ruptured blood vessel.

The link below is the best information I could find. Understanding the rarity of reported cases (from the first case in 1966 until 2013 only 50 cases were reported ) I’m not expecting a cure or even a treatment. But if you happen to be researching anything similar , I’m happy to help by talking about the things that are medically unusual about my body. My neurologist is reaching out to other doctors even in different specialties. But rather than sitting back and waiting for him to save me, I need to feel like I’m doing something to help.

Yes, I am one of those horrible patients who thinks she can help, but in this case I can. Let’s help each other. I CAN HELP!

It’s official, I’m no longer a patient

Unfortunately the news isn’t great. I had my second brain scan since March and the new bleed in my brain this morning. The answer to the question what was bleeding is a blood vessel. What caused the bleed? It seems that some of my brain cells have been behaving like the cells of the piece of benign myxoma tumor in my brain and it seems like the cells are attacking blood vessels. It seems that theres nothing that can be done. My neurologist told me that I don’t have to take it easy anymore, so I can start back with my bike, slowly. It’s a no to dental implants no metal allowed as I’ll be receiving several MRI s yearly. So the only option for my teeth is extract the rest of my uppers and replace with a denture. Because the cause of an atrial myxoma tumor isn’t known, and the aneurysms are a very rare after effect, I’ve graduated from patient to research subject. According to my neurologist because my case is so rare there are very few doctors on earth with experience enough to offer any advice. I’m expecting to see several types of specialists over the next however long I live to get more types of research going as there are some genetic markers that are known, including many dark moles or lesions on the body. Some of the specialists include oncology and optometry. During our conversation, I mentioned that I have a large brown blotch on my right eye and asked if that was something that could be related ? He thinks it might be, so we’re just going through everything and plugging it into the mix to see if it fits. I’m still getting headaches but while they’re more painful they don’t last as long.

I’m still trying to digest everything, but, all of this solidified a thought I’d been having. I will be donating my brain and my heart for scientific research. In the meantime I need to continue on with recovery . I just want to walk again before I’m dead. It’s no longer a New years resolution, it’s on my bucket list.

As to just how rare this is, since the first reported case in 1966,there were only 40 cases reported as of 2010 and not many more since.