Thoughts

Four years on…

Hi, everyone! No particular news… just an update to say “hello”. It’s 2019. My MRIs in 2016, 2017, and 2018 have shown no changes, so that’s great. I go in once a year (in June) so they can have another look, so the next one is coming up. I’ve said it before: I was hoping …

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Hypochondria

I’ll admit to feeling a little paranoid about health things for the last six months or so. It’s a little embarrassing.  My hip hurts – has the cancer spread to other cartilage? I have a particularly severe head cold – has something terrible settled into my re-routed sinus cavities? Is my slightly lingering cough a sign of …

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A Gift from the Boy

I was just a little bummed out the week before Christmas this year. Last year was incredibly busy at work, and I never got around to decorating for the holidays – no tree or anything, which turned out to be kind of a bummer. Then when the whole brain tumor thing came up, I really …

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Holidays Past

I’m the atheist who geeks out about the holidays more than anyone.  What could be better than a holiday season filled with family, great food, gifts, and even a tree in the house? It’s just pure happy, and as long as I can remember, always has been. Growing up, our parents went to an immense amount …

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January

Mom pointed out I should probably post about how the whole craniotomy/brain tumor recovery process is going, and she’s totally correct. The craniotomy was on May first, 2015. I returned to work at the beginning of July, starting with four hours a day, then increasing to five hours a day the next week, six the …

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Busy for the Holidays

Sorry about being offline for a while… I switched hosting and domain name services and haven’t had time to wrestle the content back into working order. Now everything is back up and running, so I can post again. Win! For the last few months, things have been pretty busy. I’ve been back at work full …

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Sold!

The Minnesota closing was today. Our house in Anoka is officially sold! Yay!!!  

Neuropsychological Testing

Yikes! Eight hours of neuropsychological testing today. You can stick a fork in me – I’m totally done. Neuropsychological testing is to evaluate how effectively (or ineffectively) various different parts of your brain are working. It’s sort of like a massive IQ test filled with activities that seem like they should be pretty simple and straightforward, …

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Productive Day

Dipped my toe back in to the Costco lake today by attending a great networking event where Brene Brown was the speaker. She was amazing, and it was wonderful to see work buddies after such a long absence. I thanked Jim Sinegal for making sure we all have such outstanding healthcare, and he was very kind. Afterward, Abe …

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Cured

Not really. The thing is – I’ve had what appears to have been a successful surgery to remove the brain tumor. They removed enough that Dr. Ferriera says it won’t be necessary to go back in again at this time. Despite research that shows significant differences in long-term outcomes for people who go through radiation …

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Mystery Solved

I’ve been feeling rather anxious and down in the dumps lately – not all the time, but more often than I’d prefer – and couldn’t quite figure out what to do about it. It’s been quite a while since I’ve felt so bummed out, and taking action to address it requires knowing what to address and …

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Priorities

The thing I’ve struggled with lately has been how to integrate this cancer/tumor thing into how I think about the future in a comfortable way. It all feels pretty surreal. Physically, given what’s happened, I’m not feeling too badly. My brain still gets tired, but that’s improved considerably since the surgery. Emotionally, it’s a mixed bag. Some days …

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Head Scar

The craniotomy left a pretty substantial head scar. It has healed on the surface, and pretty much looks the way it’s going to look from now on – large and winding in meandering curves around my cranium, with a decorative extra bald spot on the right hand side just for balance, as though my head were a …

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Home Sale Countdown

We just got word a few days ago that the closing date for our house in Minnesota will be July 29th (plus or minus a few days, depending on paperwork stuff). This should be very exciting for our friends who own property in Minnesota, because it means real estate values should shoot through the roof …

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Glasses

I picked up new glasses yesterday. It was a trip to get my annual glasses prescription that launched this entire chunk of strange turmoil. For the last few months, I’ve been wearing my old glasses with a sticker on one lens (the sticker is called a “Fresnel lens” sticker and functions like a temporary prism …

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Abe!

Abe’s been hard at work on his latest illustration. It will be posted later today on merkstudios.com. I’m incredibly proud of him – his work is just awesome. UPDATE: Okay – maybe a few days… he’s making some last-minute edits. Exciting! I’ll let you know on this page when it’s up and ready. UPDATE 2: …

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Slow and Steady

I’ve been posting less often – sorry about that. Week after week of incremental progress is bound to get a bit dull for anyone reading this stuff. Also, my ongoing dance with two partners – mostly Good Cheer with an occasional tap on the shoulder by Vague Crankiness – feels a bit indecisive and doesn’t make …

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Fallout 4

What does it say about me that I’m inordinately excited about Fallout 4 is coming out in November? Seriously – I can’t remember the last time I was this thrilled about some upcoming entertainment offering.

Back to Work?

So, when is the most appropriate time to return to work? This poses a few challenges. From a neurosurgery standpoint, my tumor has been removed, my incision is largely scarred over, most of the swelling is gone, I can walk and talk, and everything else will take 6-12 months to heal. From that standpoint, I’m …

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The “fight” against cancer

I really don’t feel comfortable with framing cancer treatment as a “fight” against cancer. Over the years, I’ve heard a lot of people talking about it that way, and understand why, but it doesn’t seem quite right. For me, that framing has always subtly implied that the person with cancer has an unrealistic degree of control or influence …

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Missing Words

I seem to be temporarily misplacing some really basic words. Example: I thought it would be nice to do an inventory of our kitchen items this morning in an effort to get rid of some unnecessary utensils and whatnot. While doing so, I listed nearly everything in our drawers, but found it strangely impossible to remember these extremely …

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Priorities

In addition to napping, healing, and all the other appropriate activities, I had hoped to be able to use this time to accomplish something meaningful, but that hasn’t happened. My level of attention isn’t up to it just yet. I wondered a bit whether facing down my mortality in such a specific way would impose some …

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New Bald Spot!

Crazy. We’ve been monitoring the fairly extensive incision lines on the left hand side of my head since the surgery, of course. Thursday, however, we came across a new one that we hadn’t even noticed before! Strangely, it’s on the right side. I assume it’s from the clamps they use to keep your noggin in place during …

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Books

Just before surgery, I decided to buy a few books for my time in the hospital. Both were written by neurosurgeons about what it’s like to do their jobs: Another Day in the Frontal Lobe: a brain surgeon exposes life on the inside by Katrina Firlik When the Air Hits Your Brain: tales from neurosurgery …

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Pills

I really don’t like taking pills unnecessarily. I don’t like swallowing pills, and especially dislike those uncoated pills that leave awful-tasting powdered residue in your mouth after you take them. Yuck. So I’ve always been inclined to take the minimum (jokes notwithstanding, this includes pain pills). Whatever is necessary is fine, but no more! Of course, …

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Brain Phoenix

I’m pretty sure I want a tattoo of a phoenix carrying a brain. The phoenix is on the official flag of San Francisco, for obvious reasons. For less obvious reasons, the San Francisco phoenix has a banner beneath it that says “gold in peace, iron in war”. My phoenix, aside from the addition of a …

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Physical Therapy

So, two days ago I had my first physical therapy appointments. Really, appointment one was physical therapy, appointment two was occupational therapy, and appointment three was speech therapy. I had been curious about what occupational and speech therapy would actually cover, and surprised to find out: Physical therapy is for making sure I can move …

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Visits from Friends

I’ve had a few visits from dear friends in the past few weeks, which I’ve enjoyed immensely. Today, a few came by and brought an incredibly wonderful card and gift basket from my co-workers at Costco. I’m deeply touched by everyone’s thoughtfulness and generosity. The card was extraordinarily sweet, and the basket was filled with all sorts of neat goodies …

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Feeling Better?

As of today, I can hold a relatively coherent conversation about straightforward things. I can stand and walk across a room most of the time without falling. I can get dressed and usually take a shower without help (although doing both will generally tire me out enough to need a nap). The swelling on my face and …

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Two Week Review

Last Friday we met with Dr. Ferriera, the amazing neurosurgeon who handled my craniotomy, to follow up briefly on the post-surgery pathology report. Here’s what he said: it turns out that the tumor is a grade two myxoid chondrosarcoma. He reiterated that he was able to remove approximately 95% of it. He said that the tumor …

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Head Cold :(

Bummer. I’m pretty sure I’ve developed a head cold. No especially high temperature – just a very slight temperature, cough, mild stuffiness, and the occasional sneeze. I’ll have the doctor’s office double-check it tomorrow to make sure it’s not a cerebrospinal fluid leak, but I’m pretty sure it’s really just the cold that’s been going around. On …

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Research Funding

So, chondrosarcoma is one of several rare cancers. The drawback to having a rare cancer is that there is seldom a lot of research about it. Scientific research in general is often expensive and time-consuming, and few organizations are interested in spending time and money on the unusual stuff. My big questions if this turns out …

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Facebook

I just checked Facebook a few days ago for the first time since surgery, and was really deeply touched by the responses from my old friends. I had waited to post anything about the brain tumor until just before surgery because I wasn’t really going to have a lot of time to communicate about it in …

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Strange Dreams

I’ve had extremely strange, vivid dreams about random things ever since the surgery, probably due to all the exciting drugs they’ve prescribed. Last night I dreamed I returned to work.  I was super-happy to see all my work friends, and we had a lot of impressive-looking new employees in the department wearing beautiful suits, so it …

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Slow Progress

Hi, everyone. Not much to report over the last few days. Things are progressing very slowly, with lots of naps. A few dear friends have come by to visit, which has been a lovely treat. I may not be able to offer great conversation, but they certainly have my love. Abe’s been heroic and incredibly sweet …

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Surgery

Hi, everyone. Surgery was last Friday, and this week has been a bit blurry. We arrived home from the hospital the night before last, I think. Lots of drugs and naps since the surgery, and not a lot of clear thinking. I have been able to read a little today and thank you all for …

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Angiogram

My angiogram was yesterday afternoon (I said in yesterday’s post that it was going to be today, but have updated it because that was incorrect). They did it around 2:00 p.m., and it went very well. No vessels required embolization, so the procedure only took about three hours. Afterward, I had to lie flat for …

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Here We Go

So, Sunday was a fun day with my family. We visited Pike’s Place Market and took the ferry to Bremerton, . Monday was my MRI and CT scan, followed by a visit to Snoqualmie Falls, a pleasant drive around North Bend, and had a great dinner at Claim Jumper in Redmond. Today was a day full of pre-surgery appointments. …

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Visit

My awesome parents are in town visiting. I’m really grateful to have them here. It’s been a while, and I’ve missed them. This is the last weekend before the craniotomy pre-testing begins at UWMC and Harborview. We took a nice drive up to Leavenworth yesterday. The weather cooperated beautifully, and it was lots of fun. …

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Other Blogs

It’s been interesting reading others’ accounts of what a brain tumor is like: 70 Things I Learned From Having a Brain Tumor What to Expect When You’re Expecting A Craniotomy Favorite Things: Brain Surgery Recovery Edition Jeff’s Brain Lost: The Six Year Fog Man Films Own Brain Surgery Does a Brain Tumor Diagnosis Mean You Are …

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The Cosmic Lottery

When I was younger, I probably would have spent a lot of time pondering the “why me?” question and upsetting myself with the possible answers. The problem of “why bad things happen to good people” was one of the most stubborn theological questions that plagued me as a kid. It really doesn’t bother me at all …

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Weenie

As the surgery date approaches, it’s a little anxiety-provoking to think about what’s in store for my poor noggin.  Oh, sure, I’ll have an awesome head scar and maybe even an eye patch, which is all sorts of punk rock greatness: but I’m going to have to pay for it with a splitting headache that will probably …

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DIY Cranium Souvenir

While poking around online, I became smitten with the idea of having a model of my skull, brain, and tumor built from my MRI and other imaging. It would be like an awesome souvenir. Sadly, if you want a really nice professional skull made from clear dishwasher-safe material with a color-coded tumor (I requested purple), …

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Dr. Manuel Ferriera

We met with Dr. Ferriera today, and he is going to be my neurosurgeon. We have scheduled the surgery at University of Washington Medical Center for May 1st, and I will go in for a pre-surgery angiogram on April 29th, which may turn into an overnight stay, depending on the results. Dr. Ferriera specializes in …

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Treatment Plan Options

So, not a half hour after my incredibly disappointing interactions with the Mayo Clinic, I got a call from the extraordinarily kind Dr. Louis Kim, the chief of neurological surgery at Harborview medical center, which is affiliated with the University of Washington. He was one of the local surgeons Grand Rounds recommended for me. He was …

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Goose Chase

Mayo has a few quirks. One is that they assign a doctor to you – you don’t necessarily get to choose who will do your surgery. They had initially assigned Dr. Michelle J. Clarke, who Grand Rounds said was very good. When I called back to find out about their procedures, though, the fellow who …

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Hospital

Abe and I had a long talk about the hospital question, and made a decision. We decided to go to Mayo. We have friends and family in Minnesota, which is great. Also, the Mayo Clinic is one of the best hospitals in the world, and may be the best in the U.S. With Mayo, we’ll always be able …

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Risky Decisions

It’s not just choosing a medical team that’s challenging. Choosing a hospital is also difficult. There are a variety of information sources out there about hospitals, and some seem to be significantly better than others when it comes to general safety and neurosurgery outcomes specifically. The real problem is: what happens if something goes wrong? It …

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Google

“Whatever you do, don’t start searching on Google – just talk to your provider.” Every medical provider I speak with says this, and I know why, but I hate it. It’s super-condescending. I get that a lot of patients start reading about “alternative healing” methods and other nonsense for serious diseases and get all kinds of …

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Kindness and Disbelief

For the record, I’m an atheist. Not an on-the-fence atheist or an agnostic, but a solid, definite atheist. On some level, this blog is bound to be about how an atheist processes this whole brain tumor thing. So, let’s get the obvious stuff out of the way: When someone says “I will pray for you”, what …

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Chapters

I like to think of life as having chapters, like a book. We moved a lot when I was a kid, and thinking about it that way made sense – when you move somewhere new, an old chapter ends, and a new chapter begins. New chapters mean leaving behind the version of you who lived your previous …

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Lucky

I’ve been incredibly lucky all my life, and I’m lucky today. I had a wonderful childhood. My parents are kind, dedicated and loving and we have a great relationship. They spent a lot of time and effort when my sister and I were kids to make our lives fun and interesting. We always felt like they …

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Mortality

Nothing like the word “oncology” to make a girl think about death. I know, I know. It’s too early to think about things like that, and it’s important to stay optimistic, and platitude platitude platitude. But I defy anyone to hear that they have what is almost certainly a malignant cancerous brain tumor and not …

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Work

It’s been difficult to figure out how to approach this at work. My work friends are kind-hearted and gather around to support people in our department who fall ill. It comes from a caring place, but I don’t want to be the center of attention at work in that way, for a few reasons. First, I’m …

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MRI

Here were the findings from the initial MRI, for anyone who is curious: There is a high T2, homogeneously densely enhancing mass expanding the petrous apex and left side of the clivus. Dimensions are 29 x 34 mm, extending cranial caudal for 33 mm. There is extension into the left prepontine cistern with mass effect …

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Finding Out

About a year and a half ago, my eyes started behaving strangely. Several times a day, I would suddenly start to see double, and it took from a few seconds to a few minutes to force my eyes to focus again. I thought it was odd, and when my optometry appointment came around again and it was …

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