Brain Tumor: Next Steps

It has been a whirlwind of medical appointments in the past week and a half since I found out that I have a brain tumor. (More on my first post here.) I feel like I'm at UCSD almost every day now for some type of visit. I swear being sick is a full time job. Luckily I feel essentially "fine" minus sporadic headaches, so I am working for as long as I feel okay. I've talked to my company about disability and I'm going to push that off as long as possible since it will result in a 33-45% cut to my paycheck. Who can survive on that??

This Week

This week involves appointments preparing me for surgery next week. 

• Flu Shot
• Pre-Op Appointment
• MRI

Today or tomorrow I need to get a flu shot. I've never had a flu shot in my life since I'm rarely ever sick, and I get a cold maybe once every few years and haven't had the flu since I was a kid. I know they say the flu shot isn't supposed to make you sick, but I swear friends and coworkers who have had flu shots always seem to complain about feeling under the weather.

My pre-opp appointment with the neurosurgeon is Wednesday morning. I'm assuming he will go into more details about how the surgery will go and how I need to prepare. In the hopes that his preparation directions include lots of pampering, I've already made a 2-hour massage appointment for this Saturday. Let me know if you want to sign-up for a time slot to rub my feet this Sunday. J/K. 

Friday night I have my next MRI. This will be different from my first MRI since I'm being sent for an appointment with a specific machine. (Brainlab MRI with fiducials.) This MRI will create an image that will help with the guidance of the surgical equipment next week. 

My Neurosurgeon & Neuro-Oncologist
Discussing Brain Tumor Research and Treatment

http://youtu.be/ed0u847hfDA

Next Week

My surgery is schedule for 7:30am on Monday October 8th and I'm supposed to arrive at the hospital at 5:30am that day. Are you marking this on your calendar? Please, please pray for me that day. I'm afraid of surgery and pain in general. I have full confidence that my doctor is one of the best at what he does, but I'm still scared. I'm afraid of complications, and I'm afraid of waking up in pain. I will be in the ICU on Monday and Tuesday, and will be moved to a lower level of care in the hospital for the next day or so afterwards depending on how I'm recovering. The following week I will most likely be recovering at home (read that as catching up on years of Days of Our Lives that I've missed) and then the week after I anticipate going back to work. 

Family Support

I am so fortunate to have the loving support of so many people, and we will have a full house over the next couple of weeks. David's mom is flying in on Thursday and saying for nine days, my dad is flying in on Sunday from San Francisco and staying for a few days, and David's brother is probably also flying in on Sunday and staying for a few days. Luckily my mom lives only 90 minutes away, so I'm assuming that she will be driving down each day. I'm so glad that David has family coming to support us during this time, not only to give extra support to me, but to be there for him as well. As my primary caregiver I know the next few weeks, months, years will be hard on him.

Facing Fears/Staying Positive

I've had so many people tell me over the past few weeks that I'm so strong and so brave. Am I? I mean I'm really scared of what is ahead. Does not crying every day about it make me brave? I don't really feel brave, I just feel focused. In general I believe you should focus on what you can control in life. I can't control the fact that I have a brain tumor, but I can control my response to it. I know I'm in the best hands at  UCSD and I know I'm surrounded by so many loving people who are here to support me and help me get through this. I'm going to focus all of my energy on getting better, and praying that my surgery and treatment result in the best possible outcome. (Tumor be gone!!)

I watched this TED Talk yesterday from the local TEDx event I worked on a few months ago (TEDxAFC), and I think the essence of this message explains how I'm feeling. John Halcyon Styn talks about "Crap or Cone". He says that at all times in life you are holding a wonderful ice cream cone in one hand, and when you look down you see that you have your opposite foot in a pile of dog poop. Now - which of the two do you want to focus on?

TEDxAFC - Crap Or Cone

http://youtu.be/hkLM-IlwwPk

So I Have a Brain Tumor ....

Well, the title of this post pretty much says it all. Last Friday I received some terrible news ... I have a brain stem tumor. I've had the week to process this and I'm still a bit shocked, sad, and scared ...  but hopeful.

Anatomy of the Brain

Back in January I started having headaches. They weren't the kind of headaches I think people normally experience (I rarely ever have headaches or even get sick), the pain was at the back of my head and was a sharp, stabbing pain that lasted 10-20 seconds. The attacks would come on several times a day, and I learned over time that they seemed to be triggered by movement. The attacks became more frequent until May when I finally made an appointment to see my primary care physician. I came in at the end of a really long work day. I had been up at 3am to work a tradeshow in Orange County and was completely exhausted. When I was asked to lie down on the table I thought I was instantly going to fall asleep. I was also coming off a crazy busy week and I'm sure I seemed ridiculously frazzled. The doctor counseled me on stress management and proper sleeping habits, and told me that she thought my headaches were from stress and lack of sleep.

Love this Picture from My Job

I changed my sleeping habits and went from 5-6 hours of sleep to 7-9 hours of sleep, yet the headaches remained. I came back in again in July and this time the doctor prescribed Naproxen. They still weren't sure what was causing my headaches.

Side story - back in March I noticed that my smile was crooked. I knew this was a recent development since I looked at my face critically every day (thanks to my job), and I know that my face was almost exactly symmetrical prior to this. I work in the aesthetics industry on a medical device for wrinkles. I stare at people's faces all day and can notice slight imperfections, I totally knew my face had changed. I asked my boss and several of our doctors if they could notice something was off. Everyone told me I was crazy and not to worry about it.

Crooked Mouth & Cheek

Well .... when I was with my doctor in July he suddenly stopped and stared at me and said "I think you have Bells Palsy!". What?? That's what I had been saying! He called another doctor in for a second opinion, but she dismissed the idea and then told me to find another job since the fact that I thought my face was crooked was some neurosis from being in my industry.

Back to the Naproxen, I took it for three weeks before giving up. I asked for a referral to a neurologist and was finally in the queue to see what was really going on in my head. Unfortunately there was a 2 week wait to make an appointment (thanks insurance referral) and then a 6 week wait to see the doctor. In this time the headaches continued. Over the course of the year I also received several massages and had three chiropractic visits. Nothing helped.

The day finally rolled around in September when I could see the neurologist. He seemed less concerned with my headaches (saying they were probably muscle spasms) but seemed highly interested in my facial palsy. Facial palsy is usually caused by damage or infection to a nerve, and he wanted to do a MRI to get to the bottom of it. My appointment was last Monday, the MRI was on Thursday, and on Friday I received a call that almost made my heart stop. The neurologists office called me asking me to come in that afternoon, and said that my doctor didn't even work that day, but was coming in to see me. I was on the way to meet a friend for lunch and it took everything I had not to start crying or throw up. I told my friend what was going on, but pulled it together and tried to think positive thoughts.

I'd Describe an MRI as Getting Into a Coffin with a Jackhammer

David met me at the neurologist's office right after lunch and we received the bad news. The MRI revealed that I had a large brain stem tumor. The tumor was was pressing on one of the nerves which is why I had facial palsy, and the tumor was restricting the flow of spinal fluid  and was also causing a fluid build-up in my head which was probably causing the headaches. Shocked. Stunned. Terrified. Devastated. I went through all of these emotions within minutes. 

I had the weekend to process the news and then this week has been a flurry of doctor's appointments and planning. I met my neurosurgeon and neuro-oncologists this past Tuesday. The plan is to perform a biopsy to see what type of tissue the tumor is. They are pretty sure its cancer so they are preparing to have me go through 6 weeks of radiation and then 1-2 years of oral chemo. Due to the location of the tumor they can't remove it. I need my brain stem to live. This means they can only treat it and hope that it shrinks. The tumor appears to be slow growing and they think it developed over a number of years. This means that it will also be slow to respond to treatment.

The neurosurgeon is going to place a permanent shunt in my head to drain the fluid from my head down into my abdomen. The shunt placement procedure and biopsy will both be performed on Monday October 8th. To say I'm scared is an understatement. I'm scared of the surgery, I'm scared of the treatment, and I'm scared of the outcome. Throughout this all though I'm doing my best to maintain a positive attitude. I don't believe in my heart that its my time to go. I have faith in my doctors and God to save my life. The support I've received this past week from friends and family has been mind blowing. I have never felt so loved in my life. I hope that I can channel all of this positive energy and remain strong through this tough battle ahead. 

Sign at the UCSD Moores Cancer Center That Made Me Smile

I was in the process of training for the Marine Corps Marathon in October and California International Marathon in December. Those are obviously both out and at this point I'm not sure I will try to do any other marathons. For the past week I've just been running a few miles here and there every other day. Its enough for me to get a sweat going and to feel good. My boyfriend David and his family have been amazing throughout this all, and I will be leaning heavily on them and my family and friends going forward. 

All three of my doctors are the Chiefs of their departments at UCSD. I believe that I'm in the hands of the best of the best. I feel like its a good thing I'm a marathon runner, because I'm up for tough challenges. I'm going to fight this with everything I have, focus on the future, and remain positive.

Summer 2012

Wow, its been a busy summer! I've barely had a moment free to update my blog,  and post after post have never made it from my brain to my blog. I've had some recent health challenges lately which I will address in my next post, but for now I thought I'd look back on all of the fun things that have kept me busy this summer.

May 2012 (I realize Summer starts in June....)

May marked the end of my 6th season coaching Girls on the Run and our season end 5K. As usual the day was amazing and fun, and I'm so proud of my team! More on the race here.

Girls on the Run San Diego Sparkle & Shine 5K

In May I also went to my former coworker Suzi's wedding with my friend Devika as my date. Beautiful day, so happy to be a part of it!

Suzi & Dan's Wedding

Me and Devika!

 

I also completed my first bike race in 2012, a 67 mile ride through San Diego County. More on the San Diego Century here.

Smiling at the top of Three Witches Hill

June 2012

June of course is my favorite month of the year. Why? Well its my birthday month! The month started out with attending a Speaker Boot Camp for TEDxAFC. I got involved with the organization in March and helped them plan their big event in July. The Speaker Boot Camp in June gave some of the speakers for the main event a chance to practice their speech and receive feedback. The majority of the speeches moved me to tears and I'm so bummed I never ended up getting to see the main event. 

Posing with the TEDx Sign

The weekend after the Boot Camp I was in Vegas for work,and then flew home to San Francisco to celebrate my birthday with my birthday twin Dad and friends. Quick trip but worth it. More about the weekend on my blog here.

Happy Birthday Dad .. and ME!

The month ended with David and I attending my cousin Rachel's wedding in Virginia. It was great to see family I haven't seen in years, and to get a chance to spend some time with David's family as well. More on that trip here.

Cousin Rachel's Wedding

Hanging with David & Nieces in West Virginia

July 2012

Although June is my favorite month in general, this July was the best month of my year. David moved here!!!!! Its been amazing, wonderful and fun. I can't think of anyone I'd rather spend my life with. My dogs of course have found a new favorite person (sad face), but that's okay!

David & Dad on Their 1st Night in San Diego

A few days after David moved here I was pretty tied up finishing up the last minute details for the TEDxAFC event I was helping to plan, and I took the day before the event off to watch some of the speakers practice and help with any last minute details. We weren't able to stay for the main event because my friend Deirdre from college was getting married up in the Bay Area. I was super bummed to miss out on the event but there is always next year. 

TEDxAFC Event Program

TEDxAFC Speaker Practice

Deirdre's wedding took place mid-July in Carmel Valley. Not the Carmel Valley I coach in, but the one up north near Monterey. The wedding was incredibly beautiful and I am so happy David and I were able to be a part of her special day. It was fun to see all of my UCSB friends again and I wish we had an occasion to see each other more often.

Deirdre & Christian's Wedding

Love This Picture with David

UCSB Girls - Go Gauchos!

Next weekend when we were back in San Diego there was a cool local event happening nearby. I guess years ago there was an annual neighborhood block party that they held in the summer, but it had died out for some reason over time. This year was their first attempt at reenacting it. So much fun! There were vendors, food, and live bands. We're looking forward to next year!

Golden Street Fair - Live Silk Screening

Vendors, Bands, and Artwork

The month ended with one of my bigger events of the year .. the San Francisco Marathon! This was my 4th time running the event and my 18th marathon total. Love, love, love this race! More on the weekend here.

San Francisco Marathon - Marathon #18

August 2012

Things slowed down a bit in August and included a few parties, one trip for work, and a few projects around the house.,

Isabelle & Chris' Engagement Party at Devika's

Cousin Jeff's Son Marcus' Birthday Party at the Carlsbad Lagoon

Tradeshow in Boston

My New Adirondack Chair Assembled with Love by David

New Screen Door to the Back Patio

September 2012

September isn't over yet but so far I've had a whirlwind of travel. Within a week period I was in Johnson City, TN, Las Vegas, and Seattle. 

Freemont Street Troll in Seattle

I also flew up to San Francisco for a couple days to attend the Salesforce.com conference Dreamforce. 

Dreamforce Conference

I'm grounded for a few months now and am probably done traveling for the year until the holidays. The summer was super busy but a lot of fun. It blew by so fast I can't even believe it!

Marathon #18: San Francisco

On July 29th I ran the San Francisco Marathon as my 2nd marathon this year and 18th marathon total. This is the 4th time I've run this event, and 3rd time running the full. Can you tell this race is one of my favorites? This race ties for my favorite marathon with Chicago and Marine Corps. I love the city of San Francisco the best (Sunset native - hollaaa!), but its a rough course known to be "Worth the Hurt" and Chicago and Marine Corps get extra points for being flat and easy.

San Francisco Marathon Course Map

2012 San Francisco Marathon Ambassadors

I was lucky enough to be selected again this year as a Marathon Ambassador which was a ton of fun. Along with getting to know other runners in the community, I also had a chance to get to know my fellow ambassadors over the past eight months thanks to a private Facebook group we were in where we could share running stories, life stories, and various other things. (The current hot topic was who could get the best time on yesterday's Google Doodle. I came in with a pathetic 19.8 seconds, but several of my fellow Ambassadors were down to 13 seconds!)

Thursday Night with the Cousins

Heading up to San Francisco

To break up the drive to San Francisco a bit, David and I decided to leave Thursday night to drive up to LA to hang out with my cousins Giselle and Donna before finishing the rest of the drive the next morning. My cousins have five kids between the two of them and I'm usually a quite popular visitor thanks to my dogs. David and I woke up the next morning to the kids whispering outside the door "I think the dogs are in there!!!" Too cute.

Sophia Giving Kona Some Love

Kona Photobomb!

Mika the Couch Potato

We left LA around 9am and hit the road. Only 380 miles to go! Yay! Ugh. I had officially taken the day off from work but needed to launch a newsletter that morning. I was very proud of myself and my company's technology when I was able to get online via my Mifi while on the road, log into Salesforce.com, and deploy the newsletter. Fancy!

My Mobile Office

First Happy Meal in 10 Years
(Not many choices along the 5)

Ambassador Dinner

Friday night Jojo had put together a nice dinner at Osha in the Embarcadero for the Ambassadors. We had the evening to socialize, mingle, and get to know each other in person. It was fun to finally meet a lot of the Ambassadors in person, although I felt like I knew a lot of them from chit chatting online over the months. 

Me & Jojo - Our Ambassador Queen

Ambassador Group Photo

To my utter delight I had nine other Ambassadors (male and female!) who were joining me in the race on Sunday in the Miss SF Marathon style Glam Runner tutu. I passed out the tutus at dinner and several people couldn't resist trying them on. I can't blame them, they're pretty darn cute!

Modeling the Miss American Pie Tutu

Tons of Miss SF Marathon Tutus!

Glam Runner Hello Kitty
Compliments of my Dad - so cute!

Marathon Expo

The next morning I worked the Tech Center at the expo with my fellow Ambassadors. We were available to help people with the official race app, monitor the live Twitter feed, and answer various questions people had about the race. I was also able to meet a few new Glam Runner friends who would be running in a Glam Runner tutu for the first time the next day. (Meg and Stephanie it was great to meet you!)

Another Beautiful Sunny Morning in the Sunset...

My Dad Had our Alumni Mugs Out for Breakfast

At the Expo with David

Working the Tech Center

Marathon Expo Tweet-Up

After we left the expo we met my Dad for a late Korean BBQ lunch and did some used book shopping at Green Apple Books where David finally found a book he'd been scouring used bookstores for. (Absalom, Absalom!)

 Korean BBQ with My Dad
David was not a fan...

 

Love this Green Apple Book Bag

We headed home to pick up the dogs to take them to the beach for a walk, and stopped by the house I grew up in along the way. 

Ocean Beach with the Dogs

Visiting My Childhood House in the Sunset

My name is still in the cement!

Later that evening we met up with Christina for our pre-SF Marathon dinner ritual at Unicorn downtown, and then before I knew it I had to go to bed. Nothing like a 5:50am start time to ruin your morning!

Dinner with Christina - More Asian Food! Yay!

Gear Laid out for the Race

My Sign Is Ready for Christina!

Fellow Ambassador Peter Ready for the 52 mile "Worth the Hurt Challenge"
As I was going to bed the ultra-runners started running at midnight!

Marathon Day

I'm not exactly a "let's get there early" kind of person and I would normally have arrived at 5:30am for my 5:50am start. All of the tutu'd Ambassadors wanted to meet before the race though at 5:15am for a picture. Rats, I couldn't miss that! I was picking up fellow Ambassadors Courtney and Susan on the way to the start line though and they were thinking we should aim to get there at 5:00am. Double rats! That meant a 4:35am departure time and 3:30am wake-up time. Do you hear a tiny violin playing?

Group Photo Race Morning

 

Against all odds I was essentially on time to pick them up! Hey, 5:03am is pretty darn good for me. We headed downtown and David dropped us off at the start line VIP party before heading back to the Sunset to get Christina to take her downtown for her later start wave. Aww, isn't he the sweetest?

Starting the Race in the Dark

Getting to the start area, meeting the rest of the Ambassadors at the start area, dropping off my stuff, and getting ready to start all seemed to go by in a blur. Soon it was time for me to start. Ack! I was a bit nervous about running the race since my training had fallen way off track, but figured I could just take it easy and put no time pressure on myself. 

Bumped into Marathon Maniac Louie on the Course

Running a Marathon at 6am Causes Stupid Faces

Running Along the Marina towards the Golden Gate Bridge

I started out pretty slow and basically continued and finished pretty slow as well. I ran for the first 18 miles or so before succumbing to a few walk breaks here and there. I didn't look at my Garmin that often and just ran by how I felt.

2011 & 2012 Photos on the Golden Gate Bridge

2011 & 2012 Photos by the Conservatory of Flowers

I was amazed by how many people I saw who I knew on the course. On the bridge there is a  nice 5 mile out and back where I got to see a lot of the Ambassadors and some other friends I knew running the race. As we looped around in the park I saw more friends as well, and at various points in the course I saw familiar faces too. I loved that! Nothing like getting to see someone you know and exchanging a smile or high five, or even a few words.

David Spotting at Mile 11!
David took this picture of what looks like me running right into him

David Spotting at Mile 18

Endorphin Dude! (In the cape)
I had a chance to chat with him in the park. He's great!

As I approached the finish line I looked down at my Garmin and thought OMG.. this is going to be my slowest marathon ever! Um, and it was. But oddly enough, I didn't care. I was having a great time and enjoying the race just for the experience. Granted I was a little bummed once I finished and people were asking how I did, but that passed by the next day.

Finishing the Last Few Miles

Approaching the Finish Line

Love this Photo of Ambassador Charlie's Mom & Sis Smiling at Me

Marathon #18 - Check!

I got to spend a short amount of time in the VIP area post-race talking to some of the Ambassadors but since David couldn't come inside I ended up leaving as soon as he got there. We didn't have much time to socialize anyways since Christina was having a post-race BBQ in Golden Gate park that we needed to get to.

Jojo & Nellie at the Finish Line
Jojo just ran the marathon course TWICE!

Ambassadors Peter, Lauren, & Libby Having TUTU Much Fun

Ambassador Susan at the Finish Line

We stayed at the BBQ for an hour or so before I realized we needed to get back on the road. I would normally have taken Monday off but I had two meetings that I couldn't miss. Darnit. David (the best boyfriend in the WORLD) drove us back to San Diego (he drove most of the way up too) while I napped of and on and complained about my legs being uncomfortable. Aren't I great?

Post-Race with Christina & Brianna

Post Marathon Blues

Now that its almost two weeks post-marathon, I think I'm finally recovering from the post marathon blues. I love being home in San Francisco and I love the San Francisco Marathon. I also really love the whole Ambassador group and wish we had even more time to hang out. There are a lot of us running the California International Marathon (CIM) in December, so hopefully we'll have a little reunion there. 

2012 San Francisco Marathon Medal

2012 San Francisco Marathon Tech Tee

For now, my focus is set on October. My next marathon is the Marine Corps Marathon on October 28th in Washington DC. I'm running San Francisco (July), Marine Corps (October), and CIM (December) again this year as I did last year. I've got a lot of miles to cover in the next few months. Wish me luck!

San Francisco Marathon Medal Collection

You can also read my race review on Running Trip here.