Friday, June 15, 2018

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.

Friday, March 30, 2018

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!

Sunday, March 25, 2018

Yes, it really is brain surgery

mri of the brain
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. 

Tuesday, March 20, 2018

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.

Monday, March 05, 2018

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.

Saturday, October 06, 2007

Greek Vacation

Janna's new "Happy Place" eating ice cream, overlooking the Aegean Sea on Santorini!href="">

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!


Crazy T-Shirt vendors on The Plaka, an open air Athens Market
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.

Wednesday, April 12, 2006

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...