Mary’s Story

Site created on May 30, 2021

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Newest Update

Journal entry by Mary Miles

Hello! Been a long time since I posted. We’ve been enjoying one fun life event after the other here- the third wedding in under 2 years is coming up in May for Alexis and Drew! We celebrated Abigail and Gavin in December w a winter wonderland wedding! January we welcomed our first grandbaby- Norman Xavier from Amanda and Norman! “Xavi” is very adorable and I get almost daily pictures or video chats since they live in Philly. 💙💙💙 being grandparents is so fun! 


As some of you know - I had a consult at Mayo to get a second opinion- it was today and was helpful!  I feel like I’m spending the evening responding to all the people wondering and praying how it went- so a quick post might be more efficient before I forget the details! 🤣
The neurologist i saw was personable, and informative. He feels my surgeon at Regions did a good job- ( whew!) he agrees we should watch and wait to treat the remainder portion. Risk of radiation would outweigh benefit w my current fatigue and cognitive processing that accompanies my fatigue.  He will look at my yearly MRI scan in May and I can do that w a virtual appt. He did say at some point radiation might be a better option to avoid facing another surgery if it grows. Cross that bridge if it comes! But relieved I’m not needing radiation now and I’m feeling good that his plan matches Regions plan. 

As far as my ongoing symptoms he feels I have a permanent disability from surgery- which other doctors alluded to but none would say w certainty. He said at this point almost 2 years out, I will always feel like my cognitive and energy battery runs out fast w some days better than others. I kind of figured that out when I attempted to return to work last fall. Didn’t go well, just attempting 4 hrs a week- then recovering for 3 days was rough. I think chasing that goal of returning to work and helping others was exhausting and a rollercoaster of disappointment the first 15 -18 months of recovery.  I’m relieved I can just figure out how to manage my symptoms without shooting for an unattainable goal now. Makes me days so much better. I’ll miss all my little friends I helped- but i keep in touch w some and when I hear from those families- it makes my day! 

The last couple months I’ve been focused on learning to pace myself, walks w friends, puzzles at my parents house, continuing to count my blessings, and soaking up what’s going good in life!! 😊 celebrating beautiful weddings, bridal showers, and visiting my new grandson! 

Hard to believe as more snow is coming down tonight, BUT.  <2 months til the lakes melt and the dock goes in (yep I’m optimistic!) and we get to enjoy the real reason we live in MN…summer cabin time! 🐟🐟🐟🐟🎣. Thanks for checking in and reading my updates! 💗


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