My "tour de brain surgery"

Phew, it has been a long time since I updated this blog.  A really long time.... let's just go ahead and address the obvious. As most everyone that reads this blog already knows, I was diagnosed with brain tumor in mid-August and underwent brain surgery in mid-September.  Well, I never thought I'd ever have to say something like that in my life, but here I am post-surgery… alive, doing very well, and recovering (8 weeks post surgery to be exact).  To be honest, so much has happened over the past few months both physically and emotionally that I'm not sure whether I want (or if its possible) to recap everything here; but, as this blog serves as both a personal journal for myself and a way to keep family and friends updated, I did want to share several photos, tid bits, and a few of the common questions I've gotten from people with my answers.  Hopefully this gives you a glimpse into my world over the past few months.  So here we go:

What is your official diagnosis? I had a brain tumor, official name, a pilocytic astrocytoma, which is most common in children. In fact, my doctors think it has been slowly growing since I was a kid and I just now started noticing it… which brings me to the second question:

How did you know there was a problem? I never get headaches and I started having small headaches and aches on the left side of my head, face, and neck consistently for 5 weeks. I went to several doctors before they found my so-called "evil invader" on an MRI scan:

The white blob on the bottom right is the tumor, this picture still freaks me out a bit

What was the surgery like? I had a craniotomy, i.e., part of my skull was removed to access and remove the tumor in my brain.  The incision itself was about 8 inches long in the back of my head and I had about 15-20 staples to hold it together at one point, causing me to fondly refer to it as my "zipper" due to its appearance.  I won't post photos of it or other graphic things in case anyone is queasy with this type of stuff, but I personally think my zipper made me look like Frankenstein and/or seriously bad ass to the average bystander -- I took some pride in this over the first few weeks ;)

Doing a silly dance in the hospital the day before surgery

MRI "fiducial" markers were put on my head with glue the day before the surgery to guide the neurosurgeons during the surgery - I joked that I looked like some sort of martian 

Were you awake during the surgery? Thank god no. The tumor was in the part of my brain that deals with motion control, so they didn't have to do any testing during the surgery that required me to be speaking/responding during surgery.  I only remember being wheeled into the surgery room and then waking up in the ICU.

Are you expected to make a full recovery physically after the surgery?  Yes!  I was cleared by PT/OT in the hospital and I don't have any physical or mental complications from the surgery, perhaps only maybe some headaches on an ongoing basis.  A big "thank god" for this one as well!  The doctors said that the fact I am young and healthy was a big contributing factor.

First walk with PT in the ICU -- success!

Were/are you in a lot of pain after the surgery? How long did you stay in the hospital?  Another "thank god" no, I have had fatigue, swelling, fever, headaches, and other fun symptoms - but I wasn't in serious pain more than a few times.  This is actually pretty common for brain surgery (unbeknownst to me before!).  Although it is obviously a very serious surgery given that it is on the brain, it is not known for being particularly painful in comparison to other surgeries.  Overall, I was in the ICU for 2 nights and a regular hospital room for 1 night before going home.

High spirits yet tired after my first walk

My lovely husband ordered an amazing Italian feast for me one the nights while I was in the hospital

My sister knows the way to my heart is through Sour Patch kids

Left the ICU and set up in my private room

Smiles to express how happy I was to be out of the ICU and in a private "normal" room in the hospital

 How has recovery been going?  I'm currently in week 8 of my post-surgery recovery.  The first 3 weeks were (dare I say) surprisingly easy compared to what I expected.  I was feeling really decent aside from napping a lot and feeling weak/tired.  I found out that this false sense of "normal" was attributable to the steroids that my doctors started me on a few weeks before the surgery to control the swelling in my brain (and I continued to be on until 3 weeks after the surgery).  Let me tell you, while steroids are lifesavers in the world of neurosurgeons, they are devious, nasty little pills in the world of patient symptoms.  While I was on them they made me feel extremely jittery and anxious, gave me the acne worse than a teenager, I had trouble sleeping, and I had the appetite of a ravenous lion (I seriously ate nonstop).  When the doctors took me off of the steroids after week 3 I suddenly had a high fever, chills, terrible headaches, felt more tired than I had ever been in my life, and had some other wonderful symptoms that are TMI for this blog.  These symptoms sent me back to the ER for the day and it turns out these were likely withdrawal symptoms (or a terribly-timed flu) from the steroids since I was on such a heavy dose for 1+ month.  I wish someone had forewarned me about these withdrawal symptoms. I felt like I was going backwards after feeling so great the first 3 weeks. The good news is that thankfully this time period quickly passed and ever since I hit the 5 week post-surgery mark I have been feeling better and only dealing with small headaches, being tired, and feeling weak, but this gets increasingly better every day.  I actually return back to work tomorrow after 8 weeks of recovery.  Although I'm not feeling 100% back to normal, I'm feeling good enough to get back into work and a routine (I think!).

Going on a walk with Dad post-surgery

Many small walks! 

My sweet friends who came to visit me

Unhappy with being back in the ER after week 3

Was the tumor cancerous?  Perhaps the biggest "thank god" is warranted here. The tumor was Stage I, which basically means it was not cancerous.  Side note: apparently the definition of cancerous vs. malignant in the world of brain tumors is complicated/confusing and I still don't entirely understand it, but that is a story for another day. 

Is there a chance the tumor will come back? Unfortunately my doctor found out via MRI after my surgery that the surgeon wasn't able to remove the entire tumor, which means that I still have small remaining tumor "spots" in my brain today; however, since I don't have significant side effects, my doctors only need to monitor me using MRIs on a set schedule for the rest of my life to ensure that the tumors don't grow (or to catch it quickly if it does) -- so far so good!

How do you feel? I'm still processing this to be honest, and I anticipate my feelings changing throughout time… but I'll leave it at this for now, there are times that I have been sad and scared but at most times I'm happy with the surgery results and my future prognosis and I'm feeling positive and so very loved by all of our friends/family. I'm also more than ready to normalize and settle into our new life in California after all of this excitement.

Do you not want to talk about it?  I absolutely do not mind talking about my brain tumor experience.  In fact, since it has been such a big part of my life over the past few months, it would feel awkward to me not to talk about it/address it with people that I know.

Any lessons learned from all of this? So many. To state the most important in my mind:

First, I have the most wonderful, strong, loving, and supportive family and friends who literally carried me through this adventure.  From the numerous flowers, gifts, cards, food, candy; to the assistance, calls, e-mails, visits, prayers, and texts of love and support; to my family and my 3 rocks (Ryan, Mom, and Dad!) who lived with me, supported me, and took care of me for weeks at a time, words just don't do justice for the amount of love and thankfulness I have.  I know this experience wasn't only tough on me but was challenging at times for those close to me, so THANK YOU ALL, you literally were/are my saving grace!

Side note, how pretty are some of the beautiful flowers I've received over the past few months!

  

Second, although the doctors said I did nothing to create the tumor, they did say that the key to keeping it from coming back relies on leading a healthy and balanced lifestyle going forward.  This means eating healthy, exercising, getting good sleep, being positive/happy, and leading a balanced lifestyle.  I was a fairly healthy person pre-surgery, but this experience creates a renewed sense of focus for me.

My sister got me this shirt as a gift ;) 

Third, brain tumors bring perspective. After the past few months, daily challenges and stresses seem more manageable and less significant in comparison to the prospect of brain tumors and brain surgery. Every day I feel lucky to be alive and feeling well and therefore, I feel a renewed sense of focus on what is and isn't important in life.

And with that - it is onward and upward with a positive, healthy life for me!

Welcome Kaden!

My adorable nephew, Kaden, was born 3.5 weeks early at just over 7 pounds. He is healthy and already stealing our hearts.  I can't wait to meet this little angel baby in person!  Congratulations to my sister and Jon for already being such wonderful parents, I'm so proud of them and the beautiful life they have brought into this world. Yay for Auntie status (again)!!!

Diane's Baby Shower

I'm on a sibling roll this week!  In mid-July, my mom and I hosted a baby shower for Diane and 30 of her closest friends/coworkers.  It was such a fun day celebrating Baby B with so many people that have oodles of love for Diane, Jon, and baby.

Our theme was mint green (as Di and Jon have chosen to keep the gender of the baby a surprise until the birth) and baby jungle animals.  My mom and I were a little worried whether all of the decorations and theme would come together as we planned it entirely from afar, but everyone loved it in the end, including the most important person, the momma-to-be!

The food spread: salads and sandwiches 

Note the oreos in the back - there is now a skinny version of oreos with mint filling!  What will they come up with next?!

The gifts waiting to be opened 

This diaper cake was so fun to make!

Some of the mint green favors my mom collected for the atendees

Diane's niece Rivka helping her open presents

No baby shower is complete without adorable cupcakes!

This little guy enjoyed his cupcake

And I mean he REALLY enjoyed it!

We also set up a onesie decoration station, which turned out to be a great way to get the attendees involved in a non-game way.  I bought adhesive that pre-ironed it onto various fabric squares and then the attendees cut out their own shapes and ironed the designs onto onesies and bibs.  It was super easy to do and the resulting creations were adorable!

The finished creations

My favorite picture of the day - the 3 Kwist ladies!

It was so much fun to plan and host this shower for Diane, she is always doing so much for others in her life, so we were happy to spoil her for a day.  I can't wait to see her become a mom, she will have endless love to give Baby B... and even better yet, I can't wait to meet my new nephew or niece and shower him/her with love, yay for Auntie status (again)!

Andrew is graduated!

I'm a few months late, but I wanted to share some photos from my not-so-little-anymore brother's graduation in June.  All 5 of my family members flew in for his graduation. We spent some QT together, attended his graduation ceremony, and met some of his close friends from college.  Our family is so proud of Andrew and the wonderful person that he has become.  I like to brag about him and tell my friends that he is basically saving the world now that he is graduated from college - he works for a non-profit that delivers targeted medical supplies and equipment to communities in need (and he speaks 3 languages)!

At the graduation ceremony

Exchanging silly faces via cell phone from the graduation floor

The other side of the silly faces transmission

The handsome graduate and our lovely parents

All 5 of us in a photo - I can't remember the last time this happened! 

Siblings (note my beautiful preggo sis (with my soon to arrive nephew or niece)! 

What handsome guy

On Sunday, the rest of my family flew out in the morning but my flight wasn't until later in the evening, so Andrew and I took a few mini adventures in the Denver area. This was my first time to Denver and I really loved it - it is full of active people, good food, and beautiful scenery - in other words, right up my alley!

Checking out red rocks amphitheater - a gorgeous concert arena overlooking the city that is built into the natural "flat iron" rock formations

Hanging with some elk friends in the town of Evergreen

Tokyo and Singapore

I recently went on a business trip to Tokyo and Singapore.  Since I'm terrible about taking photos on work trips, here are my meager photos (yet plentiful observations) on both cities.

Tokyo
Tokyo is a massive city, sprawling for miles and miles. But its also an attractive city, with lots of parks, greenery, and temples dotted throughout.

The massive urban sprawl of Tokyo

The coolest window perch in my hotel room, overlooking Tokyo

The great thing about Tokyo is that it has a very unique culture to it - unlikely anything I've yet seen elsewhere in the world. Around every corner there's an assault on the senses -- lights, colors, cartoons, music, parks, skyscrapers, palaces, animation. The best example I can think of to show this is the "harajuku" fashion style of some of the younger teenage girls.  Its really hard to explain, but basically it is a fashion style where younger girls dress up in mixed and matched, loud, colorful, punk-style clothes.

I didn't take this, but it shows an example of the harajuku style

Looks like Halloween meets Japanese anime, right?  Much of Tokyo follows a similar theme - it may look kind of strange on the outside to us westerners, but its unique and full of soul.

Oh, and no summary of Tokyo is complete without a discussion of SUSHI. You won't find fancy combo rolls with non-standard ingredients as this was essentially an American adaptation.  Instead, sushi in Japan is simple yet fresh and well crafted, a winning combination of the necessary elements.

Singapore
Singapore is modern, orderly, and clean.  In this way, it reminds me a lot of Switzerland, except in Singapore, even spitting your gum out on the street or jaywalking will get you fined.  There are rules for everything and the citizens diligently follow them.

This sign in the subway station warns that heavy fines will be imposed for drinking or eating on the subway!

Similar to Switzerland, most of Singapore's commercial growth has been in the past 30ish years and is attributable to tax incentives offered by the Singaporean government to attract foreign investment.  While the city still maintains a lot of its historical areas, most of it is fairly new and is full of modern skyscrapers and flashy lights.  I ate dinner on top of the unique Marina Bay Sands building and was treated to stunning views over the city.

Marina Bay Sands building from afar (again not my photo…)

Looking out over the sunset at Marina Bay sands

One of Ryan's best friends from high school currently lives in Singapore, so he took me out for a night on the town and we ended up back at Marina Bay sands for another view of the skyline from the rooftop bar.  

Some other observations of Singapore I had were that (1) it was HOT HOT HOT and HUMID and (2) it has a lively expat community that loves to travel and explore Asia.  I can see why many people want to live here!