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.

What’s your weirdest cat story?

Graham taking time to smell the flowers

I’ve lived with cats since I was born and I’ve never seen anything like this before. Every cat likes to do something that doesn’t make any sense, like climbing the curtains or getting their paws wet. I used to have a cat that loved to bathe with me, he’d curl up on my tummy as the water rose and dip his tail and toes in the water. But I’ve never even heard of a cat that likes the thing that Graham loves.


Specifically, Ivory soap. It’s the weirdest thing I’ve ever seen! At first, I thought he liked to play with the soap and then I saw him with a small piece in his mouth. I tried to take it away from him, but he swallowed it! We’ve had to switch to soft soap, unfortunately he likes that too, but he can’t get much into his mouth.

At least we can rest assured that we have a very clean cat!

Apparently it’s good news?

Guess where I am AGAIN

If you guessed a hospital, you are correct. It began last month. I was getting small nagging headaches behind my right eye. I went to my doctor and we ordered a CT scan because I still have a piece of the rare atrial myxoma tumor in my brain that can shift or grow. The appointment was set for Tuesday the 13th at 7:30 in the morning. I began freaking out at about 7:45 am when the scan was completed and I lifted my head to see 4 men in lab coats pointing at a screen with concern. The tech came back into the room, ushered my husband in, whispered to him, and I was quickly taken to the emergency room, where I spent a few hours, in a couple of different cubicles before the ER doctor very delicately told me that there’s a new bleed in my brain eminating from what appeared to be a small clump of cells. She then told me there are many reasons that could be causing the bleed including the big scary C word. I was left to process with my husband while nurses began my transfer to the hospital with all of the neurologists. This took a while in fact it wasn’t until I had spent 24 hours in the ER not sleeping on a gurney pressed up against the nurses station. That I was taken upstairs to a vacant sunroom . Another 8 hours later I was being transported to the right hospital. There were neurologists and neurosurgeons looking at my scans. And finally at 1pm today on Thursday the 15th, I heard what I’m told is good news… I’m going home tomorrow and no surgery needed. I have 3 small aneurysms in my brain that are not the kind that can be taken out . One aneurysm is rare but I have 3. The bleed was recent and small and did little to no damage. I go in for more scans in 6 weeks and they will likely confirm that the bleeding was caused by yet another aneurysm , that ruptured likely during my fall. I’m to watch my blood pressure, which is normally low, thankfully.

In case it wasn’t clear, the good news is that I have 3 brain aneurysms! I really need to stop trying to prove how special I am .

I’m a big cyster (sic)

I’ve shared tales of my background with cysts, both breast and ovarian . Last Friday, another cyst was found and removed in a place I would never have expected … my gums! I’m sure you remember the post entitled the tooth, the whole tooth and nothing but the tooth that has a photo of me holding the tooth that was extracted and the hole it left in my smile, well the cyst appeared 3 weeks later. My dentist had to re-open the gum and scrape out the cyst up to the jaw bone, put collagen and an antiseptic in the hole and suture it up. I’m now on amoxicillin, a broad spectrum antibiotic for a week . It was so creepy hearing the metal dental tool scraping against bone. Weirdly, the two other extractions I had in January healed perfectly . My dentist had never seen that happen before, a cyst in the site of an extraction. He expected me to be surprised, but all I could say was, “Of course I have another cyst, my body is a cyst factory. ” Get rid of one and 5 more take its place. Back to the dentist on Friday to check on the site and hopefully remove the sutures. Just in case you have a spotty memory, here again is the picture of my missing tooth.

The biggest problem with the Me Too movement. Stupidity!

Last night, Bill Maher used a portion of his hour long platform to talk about his problem with the Me Too movement. It seems that many liberal, feminist leaning men have the same issue with the movement. They all applaud loudly for women sticking up for ourselves, but the first question they need answered is, BUT HOW DO I GET WOMEN TO HAVE SEX WITH ME?

The face women make when it all comes down to the penis, yet again.

They complain that, if everything is illegal, what CAN they do?

My answer is surprisingly simple. Cut the crap and the games, try not looking at us like prey and stop seeing sex as the prize. Forget the pick up lines that rarely work. Women are over it. Instead try getting to know us and letting us get to know you. Most women need to feel like you care an iota about us before jumping into the sack. If you can’t fake that, perhaps, Mr Maher try something you’re good at like opening with a joke. Once we’re laughing we tend to be more open minded also if your sense of humor is funny to us, we feel like we want to be on your side. But most importantly, BE HONEST. Try the fucking truth for once. For example, you see an attractive woman, you walk up to her and say something like, Hi I’m Bill Maher I think your beautiful, how can I get to know you better? Or may I give you my number? If your interested in sex only, may I suggest a prostitute? I’m pretty sure that you know that that’s what they’re there for. Or perhaps a groupie, since you’re lucky enough to actually have some. Or maybe you’ll get lucky and a woman might come up to you and give you her card and say, Please call me if you’re interested in getting to know me, like I did with my husband.

I’m also calling stupidity on the women of the movement. You can’t change the rules of the game without telling men what the new rules are. If you’re a true feminist, you need to take the reigns more often and face the possibility of rejection like men have had to do for eons. After all if we really want equality, we need to start acting like it. I’m willing to bet that most liberal and feminist leaning men would be pretty flattered if those feminists started hitting on them for a change.

As for the successful men, like Trump and Cosby and Weinstein and Ailes and O’Reilly and Franken and Ansari and Mr CK, their behavior won’t change unless they’re held accountable and that’s why the movement exists in the first place. And yes I am aware that these men should not be on the same list as far as degree of crime, the thought is the same, that sex is the prize and they need to either trick a woman into giving it to them, or in the case of the first 3 men on the list, take it.


I’m starting to think I need to write a book for women called the do it yourself guide to romance. Yes, it takes guts, but it’s so worth it. I’ve found men appreciate honesty as much, if not more than we do.

I think many men would be surprised by the amount of women that are interested in them.

Thanks to Bill Maher for giving me the angle I needed to write my feelings about this tipping point moment in history, herstory? I’m coining a new word … HUSTORY. human story get it? Maybe if we stopped compartmentalizing by sex it would be easier. But we would have to let go of the word feminist, which I’m betting will be hard fought. But true equality won’t happen until we all make the shift, ladies. All keeping it does is deepen the divide by mere exclusion.

Bouncing back.

Today was the first day I wore my leg brace since falling in my last post. Pretty sure my left buttock is deeply bruised. I could only take the pain of walking for a trip around the living room. I used to recover very quickly from injuries before the strokes, before 50 years old, before disability. I’ll be back posting updates on my progress, hopefully soon. Till then, drinking water, eating protein and resting. Not to mention killing time on twitter.

Hoping for inspiration.