Betsy’s Story

Site created on June 21, 2020

Hello everyone,

The last month has been an overwhelming and frightening time unlike any I have experienced. While I have let folks know I was dealing with some serious potential health issues and asked for your good thoughts, I have waited to share until I knew enough about what I was dealing with. 


Now I know. 
I am scheduled for surgery to remove a brain tumor in an 8-12 hour procedure early morning this Friday, July 10 at University of Michigan hospital.

HOW WE GOT HERE
I found out about this brain tumor - a sphenoid winged meningeoma - on June 15, 2020. I had gone to the eye doctor because I was experiencing vision loss and eye size increase in my left eye in early 2020 leading up to the COVID shut down in March. Due to the shut down, I was not able to see an ophthalmologist until June 11. He sent me for an MRI to rule out a brain tumor - they were certain it was thyroid eye disease.
But, the results came back showing a large tumor behind my left eye,  which was increasingly pressing on my optic nerve. I was fast tracked to U of M Kellogg Eye Center the same week and my ocular oncologist and multiple neurosurgeons have determined it needs to come out, ASAP.
It is tangled up with blood vessels and my carotid artery so it's a tricky surgery and they hope to take as much out as possible but probably won't be able to safely remove it all.
I am sure you're asking what I have been asking for the last month, which is, is it malignant. 
These types of tumors are almost always benign. But we won't be able to fully rule out malignancy until a biopsy can be performed after the tumor comes out in Friday's surgery. 

And then of course, the other big question - is it impacting my brain health?
My neurosurgeon has reassured me they see no signs it is impacting my brain function, for which I am VERY thankful as my brain has always been my favorite body part. ;)

SO THAT BRINGS US TO TODAY
Now I am asking for your support again as I go into surgery. The neurosurgeon is one of the best in the country and is only operating after I got a second opinion from Cleveland Clinic.

He expects me to need to be hospitalized for about 4 days following this surgery and then to be completely in healing mode, no work, for at least a month following.


I am so grateful to have an incredible partner, Brendan O'Donnel, who has been my rock throughout all of this. 
Emily Magner and Lily Heyns are also supporting Brendan in holding down the fort with organizing needed support and care, for which I am truly grateful. I don't know how we as a family would be getting thru this without them.
And my organization We the People Michigan is also being incredibly supportive as I move thru this uncertain and heavy time.


HOW YOU CAN HELP 

I am asking for your good energy, support, prayers, whatever way you choose to send loving thoughts this Friday and hopefully throughout a successful recovery.


And as hard as it is for me to ask for help, I am asking for your support now as my loved ones and I navigate these next weeks and months. 


Lily and Emily are handing needed meal train support and healing/recovery fundraising thru this website/app.  Please check those out if you'd like to support in that way.
There is also a feature where you can leave messages with well wishes and love, which is better for me right now to have them all in one place, rather than text/phone/social media. (please do not share stories of other surgeries because at this point I'm super on edge and those stories send my imagination off in directions that increase my anxiety - thank you for understanding!)


Thank you community for holding me.
Sending you so much love,
Betsy 

Newest Update

Journal entry by Betsy Coffia

Hello dear ones,
Betsy here.

Brendan and I got home late last night from our Wed-Thurs trip to Kellogg Eye Center at U of M in Ann Arbor. We had an in person visit with the ocular oncologist who specifically handled the portion of my July 10 surgery dealing with the eye itself. This is my first time seeing him since the surgery.

Long story short, he is predominantly pleased with the healing process so far. Left eye and surrounding area have decreased swelling compared to before, but that won't completely subside for probably another month he said. Additionally, several indicators he was watching around facial and eye movement checked out. (a known risk of this surgery was that I could lose more vision in my left eye - once my dominant eye). 
Then it gets more complicated - when I woke up from surgery, my left eye was unable to look center. That is still the case and my doc would like to see more improvement there.
The left eye ability to *see* is back at 20/20 (wooooohooo!!!!) but the severe trend toward looking right means I see double when using both eyes.
He believes the swelling and very significant impact of the surgery (which included removal of tumor filled bone mass from my eye socket and tumor tissue from around my eye) are likely the reason. So he thinks that several more weeks of healing and swelling decline are necessary, at which point he is optimistic this will self correct.

I have been pretty concerned about this and I tend to like to know what "Plan B" is, so I had him walk me thru what happens if that improvement and return of focus and full range of motion for the eye doesn't happen. He explained it could require out patient surgery to address turning the eye to look straight ahead. 
We will cross that bridge if and when we come to it, but for now, all good energy and healing wishes for my long suffering and hard working left eye are most welcome! <3 

I honestly was relieved to get clarity on what was happening with my left eye and to know both his positive opinion on self correction as part of healing and that I have options if that doesn't happen.
The visit was tiring but overall, encouraging. 

Other encouraging news:
I am a little less tired these days, with a little more energy for tasks and I can finally do things like shower without assistance, walk to our basement to do my laundry, and walk our dog on my own. I even walked from my Traverse Heights neighborhood to West Bay one day this week, a big deal for me as I haven't been cleared to drive, ride a bike etc. and therefore can't do my usual swims, hikes, etc. (not that I'd have energy for a hike LOL but hey, even driving to sit in a park sounds dreamy after 4 weeks home bound!)

I am regularly seeing OT, PT and a home health nurse and Monday will see an opthalmologist locally from some "in the meantime" eyeglasses with prisms that will help with my double vision and let me use both eyes in small doses. Still wearing the patch as doctor has ordered. Thinking I need to "bling" it up somehow... sequins, maybe? ;)

So much love to you all. Brendan is winding down week two back at full time work and your continued support and community care has made that transition a bit more manageable. My spirits have been lifted by the stream of cards and notes and dinners still coming. 

Will sign off for now. Love and gratitude to you, dear friends.

Betsy
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