Brain Blog - Four Months to Me Again

A moody Seattle Alley, the gumwall. Out of the darkness, into the light. 

I'm one week shy of being 4 months from my surgery. I wanted to write this post so that, again, if anyone else is pondering whether or not to have brain surgery, know it will be ok!

Milestones are still a real thing, counting the things I can get back to and the progress I've made.
I've had 2 work trips, thankfully both on the west coast, but I've been on planes, trains and automobiles and seem to be functioning just fine. The first half hour or so on the train was a bit disorienting, but I had a scaplamene patch and did just fine. The plane was no problem at all.

Just two weks ago, I gave up my walking stick for good, shortly after a trip to Seattle. I still get a dizzy moment here and there, but mostly I feel like the earth and I are finally on the same parallel. The place on my head where I had the surgery and have a lovely scar is still a bit tender, but I was able to color my hair at the end of May, what a happy day that was! (and I'm still elated I didn't have to get a buzz cut)

The lingering challenge is definitely fatigue. I'd like to think of myself as an energizer bunny, after work I used to, come home and cook or design something or go out to a lecture. Now, I feel like everyone else, exhausted by the end of the day. I'm definitely not used to being so tired. Some nights we take a nice walk (it's light so late!) and some times I do cook dinner. Other times, it's couch time. I'm learning to go with the flow of my energy, lean in to it and take advantage when I have it, and listen to my body and just collapse when I don't. I remind myself that surgery is still a factor and it hasn't been that long since I was sleeping 18 hours a day, so I'm grateful for the fairly speedy recovery overall.

Unfortunately, I'm still struggling with a lot of headaches and some pain they call trigeminal nerve pain. This was also predicted by the doctor who said the surgery may not cure my headaches. All of this has been a lesson in hoping for the best (making social plans, planning events) and accepting the worst (I can't make the social plans because I don't feel well, am exhausted or have a headache.)

Hopefully, this is close to the last post about this surgery. I had visions of a Ted Talk or other presentation out of this, but right now it feels like it's just blending into my life. Thankfully, it was nothing out of the ordinary. Just a really scary experience that turned out quite well. And, of course, when things seem hard, I get to say, "well, at least it isn't brain surgery!" and know I've conquered that as well.

Brain Blog - Sleep

Rosie, teaching me all about day sleeping.

In normal life, sleep is important. Sleep reboots us, replenishes us and is necessary to function. Post brain surgery, sleep is vital. Your doctor probably told you that you will sleep for 2 weeks and, well, s/he is right. I spent just 2 1/2 days in the hospital but I'm pretty sure I slept almost 20 of 24 hours, other than the times they woke me every hour or two for neuro checks. Between the narcotics, the healing and any other drugs, you will be tired. Give in. Sleep.
I'm normally a fairly vivid dreamer, but during the first two weeks, I had the MOST amazing dreams I've ever had. I'm assuming it was a combo of brain rewiring and many narcotics. I'm trained as a designer (though I work as a researcher) and I had the most incredibly vivid and beautiful dreams I've ever had. I designed the most spectacular room (a modern/60's living room), apparel (I presented at fashion week with a cool concept for wearable technology) and several other vividly beautiful dreams. I was sad to see them go.
Once I got home, I slept some more. I liken my first 10 days or so to the life of a cat. Sleeping, waking to eat, then going back to sleep. Again, awake for maybe 4-6 hours of a 24 hour cycle. For me, I had my best waking hours between about 4pm and 7pm. At home, also, I did give in. Even when people were visiting, I practically fell asleep in front of them after 15 minutes. Don't despair! It will get better. But definitely sleep when your body tells you to, which it will...often.
Part way through week 3 and definitely in week 4, I started keeping more regular hours, but still often slept 10 hours (I usually get by on 6 or 7).
Now, closing in on week 5, I still sleep a lot, but my normal tendencies are starting to return. I still really love sleep because it feels good, and any pain I'm in subsides.
This is likely one of the few times in your adult life you will be allowed to sleep unabashedly. Take advantage of it!

Yes, it really is brain surgery

The cyst is the round black spot at the end of the yellow arrow.

As some of you know and others do not, I was diagnosed with an arachnoid cyst in my brain (dubbed Archie) back in 2016 right before I got married. For a number of reasons (not the least of which is it's way more fun to plan a wedding then think about brain surgery) I decided to wait before doing anything about it, but this year it seemed to be growing and the doctor recommended removing it. 

First, a moment of gratitude: I want to say that there aren't enough thank-yous in the world for my patient and kind husband (and I do mean patient) as he deals with my moods and pain daily, my family who has been amazingly supportive (my parents came to help and I don't know how much laundry my mother did in her time here), my Portland friends and other friends across the country who have sent their love and good wishes, visited when I was falling asleep and continue to visit as I still can't drive. 

As you can imagine, the day I ended up being sent to a neuro-oncologist after the curious urgent care MRI, was one of the most surreal days of my life. I was sitting in the waiting room thinking, how the hell did I get here? I assumed it was a formality, not for me, and they would laugh at the misunderstanding and send me home. Instead, the doctor looked at me seriously and said he recommended removing the cyst in my brain. Seriously?

Instead of acting rashly, I asked if there was any harm in waiting and watching and although the doctor thought it best to go in and get it he said it would be fine to wait and watch over the next 3, 6 and 9 months. And by the way, it was a weird bit of dark matter on the image and, as a neuro-oncologist, he was of course concerned it was cancer. Again, what the fuck?

The curious thing of all of it is that it was found during a typical scan for a person entering urgent care with a migraine. The rub is that it's still not clear whether or not the cyst has anything at all to do with my increase in headaches. My only solace is that now, when I go to a doctor, I can forthrightly tell them that there is nothing else physically wrong with my brain and something still needs to be done about the headaches. However, I certainly hope that headaches are diminished at least in some capacity.

Over the next few weeks, I'll be publishing more info if you are curious, have a friend going through brain surgery, or just don't know what else to read on the vast internet. I will be giving you my story here. If you, yourself are planning for a craniotomy or know someone who is, this nurse gives a fabulous overview of what to expect.

Spoiler alert: no cancer! It's a benign cyst and is now gone. 

Brain surgery - 4 week plateau

March 10, barely 3 weeks after surgery. Visiting the Chinese garden.

I remind myself everyday how generally lucky I am that the surgery went as well as it did the cyst they took out show that everything was behind and the surgeon this week said that the cyst was actually congenital they removed it and it should never grow back. All of that is awesome, good and wonderful news.

On the flip side, I still seem to be getting migraines at least the cyclical ones and I'm still fighting some pretty frustrating dizziness and nausea. I do have some fatigue but it seems to be manageable and every day I'm able to do a little bit more. The lingering effects are really the dizziness - outside the house I still walk with a walking stick and often hold on to my husband when we're crossing the streets Etc. And sometimes the dizziness is paired with nausea. Riding in a car is also still not an awesome experience.

I didn't know that this could be a lingering piece and cause me to not be able to go out on my own at this point. It seems like a small complaint but with my strength growing everyday and what feels like all of my cognition intact, this is the piece that I am still trying to put in place.

The incision has pretty much stopped itching and it's definitely still drying and a little scaly and still gross but I'm so grateful to my surgeon who pretty much cut a very small swath of hair so that you really can't see the incision unless you're looking. It's funny because many people come over and exclaim "oh you still have hair!" I even took myself to the salon today to get just my bangs cut. I was very specific with the hairdresser and told her not to touch the back of my head at all and she just cut the bangs.
Today I managed a lengthy phone conversation, a visit from a friend and dinner out. We still spent the evening at home. I'm just happy that I can be more social now even if it does feel like I'm holding court at my house because it's hard to get around. I appreciate my awesome friends who are willing to come visit and keep my spirits up and talk about something other than my health once in awhile.

That's the progress for this week I hope these posts are helping those of you who are facing this currently or will be facing it in the future.

brain blog - getting moody

I think we are somewhere around day 12 or 13. Progress is now steady but decidedly slow. In the first two weeks I slept a lot and it wasn't really something to think about it just was what needed to happen. I really wasn't in the mood for a lot of TV or radio or noise or company.

Now is when it gets a little bit harder. I look a lot more okay I'm a little stronger and yet everything still takes what feels like a Herculean effort. I still love the idea of laying in my bed with my eyes closed. It feels the best.

I'm also reminded daily how lucky I am to have a husband that cares for me so much family that was able to be here for almost 2 weeks and have the finances to Simply take the time off that I need to to heal. Again, it doesn't feel like there's really much of a choice to the healing but rather working to tolerance.

When we scheduled the surgery , my parents had a trip planned. I don't think any of us and the thought that they might actually be able to go. However, tomorrow, they are off on a plane Atlantic Ocean and they say. It is a little unnerving to know they will be so far away but honestly if we've made it this far I don't see anything going terribly wrong at this point. Mom was here for about 11 days and dad was here for about a week. Again I'm not sure how we could have done this without them.

Greek Vacation

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We started in Athens and did the obligatory tours of the Acropolis (left), and visited the Archeological Museum. This began many days of eating spinach pies, and feta and tomato sandwiches from the various street vendors. This also began many days of walking, a lot!
Athens included seeing the changing of the guard and a stroll through the colorful Monastriaki market and eating our first excellent Greek food while enjoying live Greek music at the Tavernas.



Birds - some of the prolific "wall art" seen all over Athens. Tons of motorcycles too, since they fit down those crazy narrow streets!

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Crazy T-Shirt vendors on The Plaka, an open air Athens Market
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From Athens, the train took us to Meteora where we met our not so vegetarian friendly hosts where I was told in no uncertain terms I was "going against nature." We ate elsewhere... The hotel was great, right at the base of the amazing rocks upon which monasteries were built in the 1500s. It's striking how scared they must have been of the local situation to put their monasteries SO high on these amazing rocks. We never figured out the bus system and ended up walking over 7km (~5miles) between monasteries and up and down to our hotel.

The trip continued to a ferry and landed us on Crete in Hania, a sweet and touristy town on the west side of Crete. From here we were able to visit the beach a few times, happy to sit after much walking. I found I can actually swim if I'm in salty water!

Hania was also the base for our day trip to the Samaria Gorge on the south side of the island. This amazing natural wonder has a 12km hike (and another 2 at the end to get to the much desired ferry home). I managed to twist my ankle at km 2 on yet another almost invisible rock, par for the course. I limped through the rest of the hike, not willing to stop for anything! At the WC and water stops we tasted the cleanest most amazing water that ran through the gorge.

Through random acts of kindness and unkindness, we got on a bus to Rethmynon. The city is spelled many ways, the bus destination was confusing, and there was little English spoken. Kevin used his trusty internet connection on his cell to confirm we were likely going the right way. Here we ambled around yet another ruin of a fortress overlooking the sea - taking, yes, more photos!

Heraklion, on the east side of Crete was the final stop here. We visited the Cretaquarium to see what's under the sea in the Mediterranean. Another bus adventure, waiting 1.5 hours in the wrong spot and .5 hours in the right one... and were were back for dinner.

The final stop was the picturesque island of Santorini. Everything you see in the postcards, and all the tourists to prove it! 100+ photos in 2 days. The hotel room there was amazing with an unobstructed view of the Agean Sea. All I can say is, wow. We spent an afternoon shopping, then cooked macaroni" on a hot plate in the room after many cravings as "pasta" is translated as "macaroni" on menus. on Monday took a ride on a "clipper" type of boat to see the caldera of the volcano that broke up the original island of Santorini. More hiking! The boat also made a stop near some sulfur hot springs, but my swimming abilities didn't allow me to partake, although my travel buddy Kevin got to go!


























The travellers enjoying some history in Athens.

My house!

Well, I wrote a nice entry, then goofed saving it. I'll wax poetic later, in the meantime here are some rehab pics!
I have to say I love Portland. Traveling has been great, but I love coming home to the green city, where folks say hi and ask how you are. It's a good sized city that still has a small town style. Today was nice enough to open the windows and enjoy the sounds of kids playing outside and dogs barking in the spring air.

Below are pictures of carpet removal, a new closet being built and the wallpaper removal process...

Phoenix 2006

Well, mom and dad were nice enough to return to Phoenix for winter vacation here. A much closer trip for a weekend, and a welcome one to the warm sun for me! Portland has had rain for at least 32 of the last 33 days. Even wetter than usual, I'm told! Meanwhile Phoenix hasn't had rain in over 100 days.

We managed to fit a lot into the 2 short days including a trip to the Wildlife Park--where you can hand feed a giraffe!, a tour around an old pueblo, dinner, theater a ride on a steamboat on beautiful Canyon Lake and a trip to the world's most tourist-y ghost town.

Plus, in the lovely town of Tortilla Flat (population 6), we ate at a restaurant where the walls were covered with dollar bills left by visitors near and far.

En

Which would you rather?

Kiss a bird...or drink rain from a waterfall??

Wet Weekend

Well, it has been raining in Portland for many, many days and nights. It goes on, and off, an ON! I console myself with the fact that it's not snow...and it's not really cold! Went hiking with old buddy Kevin this weekend in Eagle Creek in the Columbia Gorge about 1/2 hour east of downtown Portland. Pictures below...Including the beautiful lichen on the trees, a snowy hilltop, Punchbowl falls, and one very muddy boot!!

Winter Wonderland

So, here in Portland, there is a place where everyone decorates their houses for Christmas. It's the mini-version of Chicago's Sauganash area. One full street that looks like you opened the door to some fantasyland. Horse drawn carriages go down the long street and you can buy hot chocolate at a stand. It's cute! Below are a few pictures...albeit a bit dark, of the lovely Peacock Lane. This link will take you to a site of slightly better pictures. As in most things, Portland's "christmas-y area" doesn't quite live up to the overdone lights in Chicago, but then, maybe this green city is onto something--- not making the electric companys rich!
http://peacocklane.net/pictures.html

Winter in the West

OK, I miss Atlanta! Well, I miss the weather :-). Although we had our ice storms in Atlanta, winter was pretty mild. I'm somewhat surprised by the impact of winter here in Portland. At the moment I am looking at maybe 1" of snow (with a layer of ice underneath) and the city is shutting down. They are apparently pouring gravel on the main roads for traction, but schools and events are closing left and right. We had Chicago sized winds today as well. It's just cold! Everyone here tells of the storm about 2 years ago where people couldn't leave their homes for a week! Buy some snowplows, people!!

The other recent wintry event was the new experience of buying chains for my tires. For a lovely New Year's Eve, I made plans to go to a local getaway with vegetarian food, hot springs, yoga and general R and R. After making reservations, I was informed that I should (and in Oregon it's the law from October-April) have chains in my car! The mountains here get pretty snowy and, again, no plows. So, this midwest city gal may have to pull to the side of the road to put chains on the Civic. THAT's why everyone here drives a Subaru!!

I hope to have more photos soon of snow, ice, mountains and all things west coast and wintry.
And, if you are reading this in December...HAPPY HOLIDAYS!!

The End of an Era

Well, today I discovered that my Georgia Tech email expired...AND, I had ignored a statement alerting me to the expiration of www.accessiblethreads.com. WOW. Don't go to this link. It doesn't link to anything. I can't believe it! I guess it's real. I have a job, I work in a great company, they pay me a salary, benefits and I work with great people everyday. Just as quickly and, unfortunately, quietly, as Accessible Threads arrived...it has consequently dissapeared. I am no longer in grad school, no longer the principal of my own company, I am a cog in a wheel, but so far, I actually like it that way.

This cog has been afforded new experiences in corporate America, experiences for networking and sanity. Experiences for having a real weekend and enough income to perhaps buy my first home. I don't think this new step would be as interesting had I not experienced doing it all on my own, being chief cook and bottle washer as well as accountant, adminstrator, graphic artist and prototyper. It taught me a lot, about me, about business and about what I want next. It's much easier to work for a large company having pushed my personal envelope by doing it my way for awhile. Right now, someone else's way, albeit a way I am allowed to challenge and drive as I see fit, works just fine for me. I get to walk away each evening not worrying where the next client is coming from and go in each morning and work with an extremely talented group of people. Not to trash Kirby at all, but he's not the most conversational work partner :-).

So, I felt the need to acknowledge this passing here, in this online space. Perhaps any google search for Accessible Threads will land someone here, where they will find it's epitaph. May you all find a few interesting forks in your road as you travel through life.

Seattle-Tacoma

The Glass Museum in Tacoma Washington Chihuly on the Bridge in Tacoma
I had my first official business trip for Intel this week, which took me up to Seattle! This is my third or fourth visit, but it's always interesting, beautiful and greeeen! The weekend included
visiting friends as well as a visit to Little Mt. Si, Discovery Park and a glass museum in Tacoma Washington, home of the infamous Dale Chihuly. Although the museum itself didn't have any Chihuly inside, there are several public sculptures which include his work. There is a bridge with a ceiling of glass pieces and a huge wall set up like an old curiousity box full of oversized glass pieces. It's very impressive and even more impressive that it hasn't been vandalized! As you drive in, these blue blobs (which are plastic, not glass, are on an overpass with the wall of glass above.

Hood River

An old (well, she's not old...but we've known each other a long time!) friend came to visit in September. My first real visitor! We had a whirlwind weekend exploring the Hood River area and surrounding farms, referred to locally as "the fruit loop." We bought many types of pears locally grown, and sunflowers and delicious Marionberry wine! It was a gorgeous weekend.

We traveled out to Multnomah and other falls and ended the day at a moonlight ceremony in the Japanese Tea Garden. We saw the full moon rise over the mountains. What an amazing sight. Flutes were playing in the background and the moon just scooted up and over the mountain. We ate yummy moon dumplings and drank sake! Since this was a night time event I don't have any good pictures, but suffice it to say it was a really special evening. http://www.japanesegarden.com/ to see a bit about this beautiful space. Below is the bridge at Multnomah Falls--you can walk across and look at this amazing sight!

And still more hiking...

Well, it was a quiet weekend overall...which leads me to more hiking! My roommate, Lindsay, and I, hit Forest Park, a great place within the city limits with beautiful hikes. One path led us to a road in the city, some pics from there are here as well. Great views of the city from the mountains.


View of Portland from above and me! decked out for hiking.














Sunset over Portland and Lindsay mid hike.














The second set of photos is from a longer hike I took Sunday in Eagle Creek. The trail followed the creek and there were many waterfalls along the way. Thanks for indulging my love of
pictures of green spaces.






















Old downed tree on the left, and Lowitt? falls on the right. I love the big bowl it falls into. This
picture was taken from a narrow ledge just across the way. As you know, i'm not exactly
religious, but someone left this book of Psalms on a rock,and I just thought it was cool. No matter what you believe, the woods are a pretty awe inspiring place.