Well, I said there would be several updates in May. This one is loaded with intrigue and science... or something. The last 15 months have been challenging to say the least with a pandemic, kids and work from home, new normal after new normal after new normal (yes I have a blog post coming about that too).
Being grumpy at people not wearing masks. Being grumpy at people who refuse to get a vaccine. Stalking vaccine sites to try to get a vaccine appointment. Trekking all over the state to get Abby and I vaccines. Trying to run the numbers for when the last possible day I could get a vaccine and still be in my 60 day window for getting my MS med will still having 4-8 weeks time after the vaccine before I needed to get my MS med, and now after all that not even knowing if the vaccine will even work for me (MS research with the rNA based vaccines like Pfizer and Moderna show a 22% efficacy rate for people who take Ocrevus). I may be wearing a mask for a long time yet. Head spinning yet?
Well mine is... let me just add to the excitement right now... My MRI in March, while showing my MS to be stable (no new or active lesions on my brain or upper spine Yay!) also showed I have a golf ball sized brain tumor. Right now that is an okay thing. It is not cancer, and is not growing very fast (Although I plan to have my neurosurgeon look at my past MRIs to see if he will assess how fast it has been growing since they started doing regular MRIs in 2014... I'm a data girl living in a data driven world...) https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643
Apparently my old MS doctor knew I had this thing in my brain but never found it to be worth telling me about (I read it in my chart a couple of years ago and had to look up what it was... needless to say he is no longer providing me with care.) I was thinking this was just 4-5mm in size but when the neurosurgeon showed me the MRI it was WAY bigger then I thought. They know it isn't cancerous because it has feet on it that follow the surface of my brain.
Anyhoo, this doesn't mean I am out of the woods. The problem is the part of my brain this growing mass is in, is also the same part of my brain that can cause symptoms identical to my MS. Yes that is right... so how does one know if the golf ball in there is causing a malfunction or if my MS is. Ah, well the Doc said if the symptoms come on like an MS flare, but don't go away then it is probably the golf ball growing further into my brain. He said I am young and that he is happy to pop in there and get it out for me before it causes more damage. I was all, um we are talking about major brain surgery yeah, so I think I will just wait and see for bit okay thanks.
The obvious risk with the wait and see option is that if it grows into an important part of my brain and starts causing obvious problems, then it will be harder to remove. So the place I am at right now is to see if my old doc will send my new doc my past MRIs so the surgeon can see how rapidly (or not) it has been growing the last seven years and have him assess at that rate when it might start causing problems. I am a data gal and I need more information before I let my perfectly lovely neurosurgeon go poking around in my brain.
Which reminds me of this blog post from President Barak Obama on how to approach tough decisions. I am asking the tough questions, getting more data, and weighing in with people I trust. https://barackobama.medium.com/how-i-approach-the-toughest-decisions-dc1b165cdf2d
https://multiplesclerosisnewstoday.com/news-posts/2021/04/12/pandemic-vaccine-looking-ahead Most of my family and friends are now vaccinated or mostly vaccinated so I am starting to look outside my bubble. I have a birthday in a few days and I have invited some of my vaccinated friends to come spend a couple of hours at my place. So I have this timeline driving me to clean my porch, parlor, table, counters and get rid of clutter. It has been two years since I moved in... if stuff is still in boxes I don't really need it do I? Free stuff table in my future... after Mother Nature finishes watering all my plants for me.
I am looking forward to some mini vacations in nature, and time spent with family. I am spending A LOT of time in my yard planting more things that will make me smile when they grow and bloom. And I am doing what I can each day to live my best life when so many days this last 15 months feels like we are all just surviving not thriving. We got this ya'll (I am working hard to change my mindset to the positive). I look forward to the day when I can give everyone hugs again so here is hoping they are just around the corner. Be safe out there! 😍🙋
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