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.
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.
Photo of my right eye, notice the discoloration at the top.
I NEED HELP!
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!
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.
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.
GRAHAM LOVES TO EAT SOAP!
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!
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’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.