2019 Neurosurgery Follow-Up

Gracious! So, I had my MRI in early May this year, but didn’t have my follow-up appointment with the neurosurgeon’s office until yesterday. The radiologist’s report from the MRI said some worrisome stuff: Study Result […]

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) […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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, […]

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 […]

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… […]

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 – […]

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 […]

MRI News

So, they like to do an MRI about a month after you leave the hospital. It gives them an idea of how things look once some of the swelling has gone down. They performed my MRI last […]

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 […]

Yay, Notes!

Several weeks ago, I requested the notes from my surgery, and they have finally arrived!  Compelling stuff, I’m sure, if you speak Medical. I’m going to spend a chunk of today trying to translate and […]

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 […]

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, […]

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: […]

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 […]

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 […]

Dr. Bloch

I mentioned a while ago that I had contacted Dr. Orin Bloch about his research. As I’m going through the pre-surgery documentation to revisit the details now that we know more about what was in […]

Second Opinion

Back before the surgery, when I was looking for a second opinion about treatment options and researching who the best surgeons in the area would be, Grand Rounds located the very impressive Dr. Manish Aghi to […]

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 […]

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 […]

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 […]

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 […]

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 […]

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, […]

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 […]

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 […]

Post-Surgery Notes

Still no pathology report, but here are some of the official discharge notes from after the surgery: Assessment and Plan Extracted from: Title: Clinical Document Author: Emerson, MD, PhD, Samuel Date: 5/5/15 Discharge SummaryDATE OF […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

The Schedule

Monday, April 27th – University of Washington Medical Center CT and MRI: 3 hrs – 10:15 a.m. Tuesday, April 28th – University of Washington Medical Center Neurosurgery department physical and history with Courtney: 1 hr – […]

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, […]

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 […]

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 […]

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 […]

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 […]

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, […]

Radiation

So, my excellent neuro-oncologist has indicated, depending on the outcome of the surgery, radiation treatment may not be necessary. She shared an article by Almefty (2007), where on page 2465, he says the following: “Radiotherapy […]

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 […]

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. […]

My Medical Team

My neuro-oncologist is Dr. Lynne Taylor, and my neurosurgeon is Dr. Joseph Serrone. At Virginia Mason, doctors get together and review these sorts of cases with a team of people once every other week. Here […]

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 […]

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 […]

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 […]