Look Up (and See Twice as Much)






"Look up!" Easy to say, difficult to do literally especially when your vision goes awry. I think I'll start with some good stuff because waiting around to be stable for a long while and good enough to write about ain't happening.

So here we go with the 'peaches' (sweet moments) from this year:

FINALLY after 2 years off Perjeta I started to feel ok-ish. Autonomic stuff still haunts me and slams me if I've done too much or get too stressed. 

I had bilateral eye surgery in Feb 2019 to try to correct 10 years of double vision. I had a stunning few months visually: the trees out my window; the Rockies; the stars outside the Calgary Observatory. High definition, 3D and so full of possibility. 





We survived SamHill's graduation from high school. Barely. I wrote about it for Wildfire Magazine when I realized many MBC peers had similar experiences. It was harder than ANYTHING in life so far. Yes he wore pajamas to graduation. And took his cousin (once removed) to Prom. 


On August 24, SamHill decided to study music for a year at Douglas College. Superman and I were holding our breath for weeks getting him settled so last minute.  He is renting a great apartment with roomies in New West and he enjoys the program. Most surprising - he's pretty darn independent. Still struggling with sleep/wake/mood but learning to self-manage through trial and error. As soon as we paid Douglas tuition,  an acceptance letter to Astrophysics at University of Calgary came in the mail. Wow.  Doesn’t happen every day. He couldn't defer if at Douglas and wasn't ready to go. I just put the letter up on the wall to remind me HE DID IT against all odds. And we can always say "You coulda been a rocket scientist." Hmm, maybe like this guy? 

Wildfire Article: 

Bina is just an amazing woman. Last year was tough for her too with big changes, grief, and anxiety. Her the dance studio closed, a BFF moved across country, and someone relentlessly bullied her. But that girI is tough, resilient, resourceful, and fiercely independent. She's really a dream. Apparently I was as per my mom but she's even better than I was!  She’s very smart,  thoughtful, compassionate, energetic, and self-aware. Of course, not perfect but damn…we finally hit one easy button… for now. 


I started getting a life after years of just surviving. Superman and I spent four glorious days on Pender Island in an Airstream. Late night fire pit and hot tub under the stars. Connection. Sleep.  I walked and even hiked with elevation. I think it reconnected us outside our roles as parents. I really enjoy being alone with him -  just super chill and he makes me feel so good. 



Had one of the best 'Turkey weekends' with the Groves. Christa and I celebrated meeting 30 years ago on Labour Day weekend at UBC.  We've both been through some tough parenting patches but the Groves' have had our backs 100% WRT cancer. We had so much fun - I pulled chest muscles laughing during Cards Against Humanity. Oh and just happens that our firstborns are both studying music at Douglas this year. 

I went to Zumba a few times with FunKS! I started shuffle jogging in August with goal to complete a 5k. I could drive to city for the day and not be a lump for a week. My mood improved muchly. 

I experienced Rethink's first Western Stretch Heal Grow retreat in October. I skeptically drew a "Divine Possibility" card at the start. Went to some very dark places in my head and heart that first day and night then wow……too much to write about now. I came home believing in possibility. I have not removed my little shimmery white bracelet because it reminds me to think of possibility when it’s tough.  

I had brutal headaches and high blood pressure for about 6 weeks in the fall and developed a condition called serotonin syndrome with treatment.  But within a week I figured it out thanks to my GP/pharmacist and got headaches under control. Turns out, I've reduced my medications by at least 1/2 since cancer came. No opioids. No benzos. Fewer antidepressants. No sleeping meds. Please don’t judge - all those helped me survive the unbearable. But boy it felt good to be on less. 

Then the Bitter/Sour Lemon…..

I had my follow up orthoptics assessment after eye surgery on October 29. I had a bad feeling about it. Within minutes of testing, there were daggers in my head and I wanted to PUKE. Things were double again - very double. Two completely clear and defined images side by side. I accepted a temporary prism and went to see the surgeon while fending off tears. He's one of the best in North America and he was stumped. He thought maybe I had the wrong glass prescription. Nope. Maybe he hadn't moved the muscle enough. Nope. It was perfect after surgery even when swollen and sore. I saw STARS as single points of light for the first time in over 10 years.  You gotta know that Dr Lyons has always cared deeply for me and been soooo sweet. I’m not annoyed with him at all. He felt awful that my double vision was back and wanted to do something… anything to make it go away. He told me to take it easy on myself - use the prism. And did I have someone to drive me around? Oh no… not again. 

The next day I drove to chemo and the doctor said "You're not driving are you?" in front of a full room. Oops. I tried to explain my safety using prism but he was skeptical. I saw Tequila & sidekick shortly after and had a full neuro screen which was OK. It didn’t seem too scary - they'd refer me to my old neuro-ophthalmologist and maybe a scan. Six days later, when driving home from New West, huge waves of nausea crashed over me. I had to pull over to close my eyes and breathe. The next morning I realized the prism wasn't strong enough anymore. I'd been assessed at 12 diopters Oct 29 and was now 16. I was in pain and terribly nauseated no matter what I did. A five minute trip in car put me in bed. The prism measured 18 next morning and 20 by afternoon. I have my own prism bar which I used for (unsuccessful) retraining years ago.  It was just like that dark time in 2011 when my vision just kept deteriorating no matter what we did. I got scared and called Tequila who ordered an MRI and would try to speed access to my neuro-op. 

I’ve been laying VERY low, not leaving the house. Today I walked 50 yards before I felt too sick. A month ago I could walk 5 km. I've had several "pity kitty raves"in my head the last few days but still haven't had a good cry. (Ok had one). It really sucks. My world has become very small again. It's really hard to find "things" (like glasses) with double vision and no depth perception.  Especially kitchen drawers or shelves or low light. I barely tolerate going in a car for 500 meters. Watching a movie last night gave me a brutal headache this morning.  I can't drive...for now. 

Pity Kitty Rave
https://youtu.be/AIKVu_Ieq8s 

But I'm still looking at my StretchHealGrow bracelet and trying hard to focus on possibilities and strategies. 

Jeff and I like to play the ‘at least’ game when things get ugly....  

At least….I got one really fun night at silent disco before it became unbearable. (You can see the wonky eyes.) 

At least….I didn’t discover the double vision through car accidents and falls on my head this time. 

At least….I can use my computer now with breaks. If my nose is 6" from the screen. 

At least….I can knit. 

At least… I seem ok in house if I move SLOW AF 24/7 

At least…I'm an OT and know how to adapt...but don't take own advice well. I switch prism from side to side. I take breaks from wearing glasses. I patch. I close my eyes for 5 minute breaks through day. I take lots of Zofran and gravol.


Don't Worry.....Too Much


I really don’t feel this is anything like cancer in my brain so please don't worry. It happened twice before surgery. Of course we will check my brain but I'm not really scared...well maybe sometimes scared when my mind takes off. I think my neuro-ophthalmologist had it right from the beginning - central fusion disruption. 


My theory: Even with correction (prism/surgery) my brain wants to see two of everything. Even with single vision close up my eyes rapidly oscillate left and right to create the image.  This isn't lazy eye muscles but a problem in the brain. 50-70% of the brain concerns itself with vision. So it's not a surprise that this disruption can makes me so tired, headachy, nauseated, and irritable.  With time it will hopefully stabilize so I can adapt. I hope it will be easier than the first time.  

My big request is that everyone avoid saying 'get/feel better.' My eyes will not 'get better' - it's a permanent glitch in the matrix. For 10 years I tried intense rehab, special glasses, patching, prisms, surgery, and completely adapting my daily life.  This is loss which needs time, listening, support and patience. I will adapt and live better but not "get better." Similar to having metastatic breast cancer...treatment for life. 

“Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don't just give up (S. Hawking)."

I guess my stars just look like this….. 















































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