Radiation Complete!

It has now been almost two weeks since I finished up with my six weeks of radiation and chemo. Whoo hoo! (I finished up radiation on Dec 7th and finished up chemo on Dec 10th.) Its a relief to not have to go to UCSD every single week day and I love that I get a break from the slew of drugs I was taking. Its funny how I was taking ONE drug to actually fight my brain tumor (Temodar), and five other drugs to combat side effects. I was on antibiotics (Bactrim) and anti-nausea pills (Zofran) because of the Temodar, Miralax because of the Zofran, steroids (Decadron) to prevent brain swelling from the radiation, and Pepcid to prevent ulcers from the Decadron. Taking pills all day is not fun, and I'm happy to have a month off before I start the next round of chemo.

 

 

My Daily Pill Regimen

 

 

Finishing Radiation

During my first week of radiation I was in the waiting room one day when a woman rang a bell on the wall to signify the end of her treatment. She rang the bell, everyone clapped, and I held back tears. I was only a few days into treatment and was already jealous of the woman who was done. Luckily my six weeks went by quickly, and as the final day approached I joked with David about being excited to ring the bell. The technicians that I saw every day were really nice, and we often chatted for a couple minutes before and after treatment. They knew that I was a runner and on my final day when they walked me out to ring the bell they also handed me a 'graduation' certificate with  a picture of a runner on it. So cute!

 

 The Bell at the Moores Cancer Center

 

 

My Radiation Graduation

 

 

Between seeing that and being so excited about the idea of being done with radiation, I had a hard time holding back the tears as I rang the bell and hugged everyone goodbye. There was usually only one or two other people in the waiting room each day as I left, but for some reason on my final day there were probably about eight people in the room. I had a full room of applause before I left which really made me smile.

 

 

My Freaky Radiation Mask

 

 

Hair Extensions

One of my big concerns during treatment was that I was going to lose all of my hair. The radiation oncologist said that I would most likely only lose hair in the back or have thinning, but you never knew. My hair didn't start to fall out until the fourth week, and it started coming out fast. So much hair came out each time I brushed my hair and I thought that this was the beginning of my year being bald. I can't tell you how much time I spent praying that my hair wouldn't all fall out. Apparently it was not in vain! In the end I had bald spots above both ears and on the back of my head behind my ears, but didn't end up losing hair on the rest of my head. WHEW!

 

 

My Hair Before

 

 

My hair was already sparse from having so much shaved from my surgery, so between 80% of the right side of my head being shaved and losing even more hair in four other locations, my overall hair count was really low and I was self-conscious each day about how thin my hair looked. My hair has been long my whole life and is part of my identity. I understand hair doesn't define me, but without my hair I didn't feel like myself, and it served as a harsh and sad reminder each day that I have cancer.

 

 

Extensions Going In

 

 

Towards the end of my radiation treatment when I was pretty sure that I wasn't going to lose all of my hair and need a wig, I decided to talk to my hairdresser about having extensions put in. I came in to visit her and she matched my hair up against a color wheel and gave me the information for ordering the extensions. I ordered them online and brought them in to be applied. The hair was $60/bundle and I needed two. I had found a few cheaper options online from China but in the end decided that there was a time and a place to be cheap, and this wasn't it.
 

 Extensions Complete! A Full Head of Hair!

 

 

On the day after my last day of radiation I brought the extensions in, had my hair cut and colored, had the extensions put in .... and left a MUCH happier and confident person.

 

Clinical Trials

Aside from hair loss, the main side effect most people experience from radiation is fatigue. It varies from person to person and the doctors originally told me that some people didn't notice anything different at all, while others ended up sleeping 18 hours a day. Yikes! I planned on working throughout my treatment and was really concerned about fatigue. How tired would I get? I expressed my concern with being tired and non-functional and my oncologist mentioned a clinical trial that I could participate in that was testing a drug called Nuvigil to fight the effects of radiation fatigue. The trial was double-blinded meaning neither the patient or doctors would know if I'd be taking the actual drug or a placebo. I was initially excited about the idea of this study and was disappointed to find out a week later that I didn't qualify since my biopsy report was too vague about my tumor type. The biopsy report didn't specifically say I had a Grade II tumor but the doctors concluded form the pathology that I was most likely a Grade II based on other factors they tested for. I'm not quite clear why I didn't qualify, I mean I have a cancerous brain tumor and was treated with radiation .. but whatever. In the end I'm so glad I didn't qualify because without the drug I wasn't tired and felt fine. Had I been accepted into the study there was a 50% chance I'd get the actual drug which is a stimulant .. and I might have been wired and would have had trouble sleeping for six weeks! Although I suppose if I was really having a hard time sleeping I'd just would've stopped taking the drug and would have withdrawn from the study.

All Smiles on my Last Week of Radiation

 

 

Although I didn't qualify for the Nuvigil study I did qualify for another study called the ORACLE study that my reproductive doctor was a part of. This study monitored the effects of chemo on fertility in women of child-bearing age. Thankfully I was able to take steps to preserve my fertility before starting chemo. For those who are not as fortunate, I hope that the information from this study helps them.

 

 

Stupid Cancer

In the week following the end of my treatment David and I went to the Stupid Cancer Un-Gala downtown. Stupid Cancer is non-profit focused on empowering young adults (under 40) affected by cancer. I first heard of  Stupid Cancer from one of my doctors, and also met one of the founders of the local San Diego Chapter at the mAss Kickers Tumor Suck Day event that we went to in October.

Helping Out at Registration at the Event

 

The Un-Gala was a holiday party at a cool wine bar downtown with food, drinks, and raffle prizes. I was amazed by the energy of everyone at this party. I have spent most of my time at the UCSD Moores Cancer Center where almost everyone is old and looks sick and desolate. Its really depressing and I don't like being there. In stark contrast though, the Stupid Cancer group was young, upbeat, full of energy, and really outgoing. One would argue that this event would draw out that type of person, but hey, I like that.

The Faces of Young Cancer Survivors

 

 

 

 

 

Brain Cookies

With the holidays approaching David and I had talked about giving my doctors gifts. I wanted to give them something unique and personal, and was stumped for a week or so before I came up with an amazing idea. Forget the fruit baskets and bottles of wine ... we were going to give them brain cookies! You know, cookies that look like brains, not made from brains. ;o) A friend of mine has a business (Sweet C's Bakeshop) making amazing custom cookies, and I had used her last Christmas to make custom cookies for my company. I emailed her with my idea and a few cartoonish pictures of brains asking if she could make brain cookies that were "cute". Cute huh? She wrote back saying "Um, I could add glitter to them?" Yes! Perfect! Ha ha.

Custom Holiday Brain Cookies

 

 

In addition to the brain cookies we also ordered some custom message cookies with a Happy Holidays message. I also went to Cost Plus and bought a bunch of gift baskets so I could make cookie baskets for each of my doctors. We dropped off cookies for my neuro-oncologist, neurosurgeon, radiation oncologist, radiation techs, and my fertility doctor.

Holiday Cookie Gift Baskets

 

 

Not surprising, but my doctors loved them! Two of my doctors emailed me and one called me the next day. I loved that we were able to give something to them to make them smile, and really appreciated the fact that they reached out to say thank you.

 

From one doctor:

"wow! those were some impressive cookies! everyone marveled at them in clinic. thanks so much. Ive never seen such detailed cookie work. they made everyone's day, and tasted great too."

 

Next Year

I am currently enjoying my second week free of radiation and chemo. It feels like a vacation! Oh wait, we are on vacation. :o) David and I are currently in West Virginia at his parents house for two weeks for the holidays. Its great to have a break from treatment and its so nice to be here with family.

 

Happy Holidays!

 

 

 



A Very BIG Weekend

This past weekend was a really big weekend!

 

Weekend Highlights:

• TEDxSanDiego
• GOTR Sparkle & Shine 5K
• An engagement!

 

TEDxSanDiego

This year marked the second  year that I attended TEDxSanDiego. I've been watching TED Talks for years and when I found out that they were having a conference in town last year I quickly applied for tickets. The day was amazing and inspiring and everything that I knew TED to be. (More about TED on my blog from last year.)

 

 

TEDxSan Diego 2012

 

 

Living Flower Sign

 

 

A few months after attending TEDxSanDiego last year I actually became involved with a nearby organization TEDxAFC and joined their planning committee. Unfortunately after months of work I wasn't able to attend the actual event since it fell on the same day as one of my friend's weddings. I missed the day sadly but knew there would be another time.

 

 

Enjoying the Talks

 

 

Salad Push Pops and Micro Greens at Lunch

 

 

 

The theme for this past Saturday was Cause and Affect. (Misspelling intentional.)

 

The third annual TEDxSanDiego will bring together a diverse group of 600 individuals, organizations and movements intent on sharing ideas and having an impact on the world. The event will feature more than 20 dynamic speakers and performers representing a wide spectrum of talent and ideas in technology, education and the arts. Speakers will deliver short talks exploring this year’s theme, “Cause & Affect.” TEDxSanDiego 2012 hopes to cause participants to affect the world in some way.

 

 

Lounging on the Pop Chips Bags

 

 

David joined me for the conference this year and we met up with my boss and her husband while we were there. I think we all left the conference thinking, what more can I do in the world? Hearing from so many inspiring speakers made me feel like I haven't done enough, and makes me want to do more.

 

 

Trying on a Brain Wave Reader

 

 

Sparkle & Shine 5K

On Sunday the next day we were up bright and early for the Girls on the Run Sparkle & Shine 5K!  Sunday was David's birthday and I'm sure the last thing he wanted to do was get up at 6am and head off to the race, but being the wonderful person he is he came with me and passed on my offer to stay home and sleep in.

 

 

This is What David Thinks of Early Sunday Mornings

 

 

This was the first season of seven that I haven't served as Head Coach for Carmel  Valley. The morning is usually really stressful for me in between making sure all of the girls have their bibs, making sure the running buddies are there  on time, checking in with our Glam Runner table to ensure tutu sales are going smoothly, and running around tyring to take pictures for our facebook page as part of my Marketing Chair duties. Not having to deal with my coach duties made the day go much easier, but it was still pretty hectic and busy.

 

 

Long Time GOTR Coaches

 

 

When I started coaching back in September of 2009 we only had 6 teams, about 80 girls, and we piggy-backed onto a local 5K. Here we are a few years later with 24 teams, almost 300 girls, producing our own 5K, and getting around 700 runners. Its amazing how much we've grown and I love that I've been a part of it.

 

 

Cheering in the Last Runner - Age Four!

 

 

Before the race started there were a number of announcements, various raffle prizes being announced, and then an award was going to be presented to the Coach of the Season. I can't remember who but someone on the Board grabbed me from further back in the crowd and told me to get up front for the announcement so I could take a picture of the winner. As dutiful photog I complied. As Amy (our Executive Director) started talking about the Coach of the Season award she said that this year they had an unusual situation. They had a coach who had dropped out of coaching for health reasons and missed most of the season, but that the girls on her team had insisted that she should win the award. As I listened to this I thought wait.. could this be me? No way. I missed like 2/3 of the season. The girls barely got to know me! As Amy continued on though and mentioned Carmel Valley though, I knew it was me. Cue the tears. Amy announced my name and I came up to thank her for the recognition, sobbed in front of hundreds of people, and ran back to David to compose myself to get ready to take pictures of the Coach who was winning the real award. I love coaching GOTR and know that all of our efforts make a difference in these girls lives, but to feel that something I may have done personally has changed some of their lives was really touching. Thank you girls! I kind of feel like I got a pity award for having cancer, but its still sweet all the same.

 

 

Tearful Hug With Amy

 

 

Adorable Get Well Cards

 

 

The Engagement

Moving on ... After all of the excitement of the 5K David and I still had a busy rest of the day planned for his birthday. We went to Massage Envy for a two hour couples massage, and also had dinner plans at the Prado in Balboa Park later that night.  While we were getting ready for dinner David told me that I should wear something nice and that he was buying. Wow, score! It felt as if it was MY birthday!

 

When we got to the restaurant he also told me that I should order as if my company was paying for it. Wow, really? Lobster please! jk. We didn't really get crazy ordering (I can't drink right now anyways so how crazy can a dinner get) but we had a full meal with an appetizer, salad, entree, and dessert. I was stuffed!

 

 

Amazing Meal at the Prado

 

 

After dinner I started walking back to the car and David suggested that we walk around the park for a bit. What? Is he crazy? I hate walking. (Yeah yeah, but I run marathons.) We walked around for a few minutes before I started complaining that it was cold. Then we sat down on a bench and I started to worry about us getting mugged. Poor David was trying to create a romantic moment and all I did was complain! I started to think something weird was going on as we sat there and he seemed to be stalling about something. It crossed my mind that he was about to propose .... and  I was right!

 

 

THE Bench on the Left

 

 

In front of the Botanical Building David got down on one knee and proposed and made me the happiest person ever. There was no other answer but YES! I'm so excited! Sneaky boy, proposing on HIS birthday! We are still enjoying the early few days of engagement but have started to  think about dates a bit. We're thinking of sometime in June maybe around my birthday. Nothing is set yet and we're still trying to decide between San Diego and Maui. Hopefully during our time off during the holidays we can start to make some plans.

 

Yes, I Have a Hello Kitty Nail :)

 



Radiation/Chemo Update

I can't believe I'm about to wrap up Week #5 of my 6 weeks of radiation and chemo. Looking back it has gone by extremely quickly, and I'm so happy to say that I've barely experienced any of the side effects that they warned/scared me about. (Nausea, fatigue, low white blood cell counts, blood transfusions, needing to go on disability, and worst of all leukemia!)  During this time I've been a good girl and have waited the full four weeks my neurosurgeon recommended before I started running again. Man, that was hard. That is the longest I have probably gone without exercising or being active since elementary school! I was antsy and anxious to work out, but consider myself to be one of the world's most compliant patients - so I rested as told. And complained a bit about it along the way of course...

 

A lot has gone on in the past five weeks. Here's a quick summary:

 

The Color Run

Earlier in the  year I heard that the Color Run was coming to San Diego and immediately talked Tara into signing up. As the year progressed it looked like I was actually going to miss the race because of a work trip, but luckily in the past month that trip was cancelled!

 

 

San Diego Color Run

 

 

The concept of the race is that you dress up in all white and run through color stations where they douse you with colored corn starch. If that sounds fun to you, you're right. It is fun! This race came at the end of my first week of treatment when I was still adjusting to all of the medications and not feeling 100%, so Tara and I ended up walking the whole course. Um, let me tell you I've never thought a 5K was so long in my life! My goodness it takes forever to walk three miles!

 

 

Color Run Complete!

 

 

 

GOTR Practice 5K

The week after the Color Run was the Girls on the Run practice 5K. This is the first season in over three  years that I haven't served as a Head Coach in Carmel Valley. Sniff sniff. I stepped down from Head Coach to Assistant Coach this season with everything going on at work, but then dropped out of coaching all together because I had so much going on with surgery and doctors appointments and radiation.

 

 

Girls on Track Carmel Valley

 

 

I came to practice the day of the practice 5K though to cheer the girls on and catch up with my fellow coaches. I really miss the girls, the coaches, and the program. Hopefully next season I can find some time to come back.

 

 

Girls on Track Coaches

 

 

 

Hair Today, Gone Tomorrow?

A few months ago when the words chemo were first uttered to me, the first thing I asked in a panic was "Is my hair going to fall out!?!?" They assured me than no, it wouldn't with the oral chemo (Temodar) that I was taking, but that I might have some hair thinning with the radiation. When I met the radiation oncologist I immediately asked him the same question. Would my hair fall out? He kind of brushed it off and said maybe not, and if so it would be in the back and mostly thinning. Okay. Whew. Each week I saw him I'd ask him about my hair again and he'd say the same thing.

 

 

Fun at the Wig Shop With Friends

 

 

Enter Week #3 - When I had my weekly appointment with the radiation oncologist he asked what week of treatment I was on. I proudly told him that I was finishing up Week #3! "Oh, okay. Well your hair is going to fall out next week." WHAT!?!?!?  Were the first few weeks a lie? I was totally devastated. My hair was going to fall out? Nooooooo. Tears.

 

 

Closest Wig to My Own Hair

 

 

Over the next week I noticed that instead of 5 strands coming out at a time 20 or so were coming out. I noticed that when I brushed my hair over the sink there was a pile of hair on the sink and ground. And finally in the middle of week four I found my first bald spot behind my left ear. And then another on the opposite side. And then a thinning patch above my right ear. Cue the tears. I bawled my eyes out. Was this just the beginning? Was it all going to fall out? Would I wake up one day and all the hair would be on my pillow and none on my head?

 

As I finish up Week #5 tomorrow I still don't have the answers to these questions. I still have all of my hair on the top and it seems like I will only continue to lose hair in the lower back where the radiation is hitting, but who knows. I've been told I will continue to lose hair next week during my final week of treatment, and the the two weeks following. I thought about buying a wig but decided to wait and see where I end up with the hair loss.  Gambling with optimism, I have a hair appointment next weekend when I'm done with radiation to have my  hair cut and colored, and to have some extensions added to the part of my head that was shaved. Let's keep praying that I don't lose too much more hair!

 

 

Thanksgiving

When I originally talked to my neurooncologist about starting radiation and chemo and was trying to get an idea of how I was going to feel, he had suggested that I plan to stay in town for Thanksgiving since I'd most likely not be feeling that great over that weekend since it hit towards the end of my treatment. With this advice David and I changed plans and decided to stay in San Diego for the holiday, and my dad made plans to fly down for the weekend to visit.

 

 

Preparing the Stuffing & The Stuffing Cage

 

 

My mom, step-father, and aunt actually ended up driving down for the day from Orange County as well, and I'm proud to say that David and I hosted our first Thanksgiving together. Hurrah! My dad cooked the turkey and I made several Allen Family recipes.( Oyster stuffing, cranberry relish, mashed potatoes, and crab dip.) Everything turned out great and I think our first attempt was a success!

 

 

Dinner Table Set in the Living Room

 

 

Thanksgiving With Both Parents - First Time in a Long Time!

 

 

Christmas Tree

The day after Thanksgiving officially marks the start of Christmas season in my mind. It was time for a tree! In the past few years I've gone to Home Depot to get a real tree, but with a little research we found that we could cut down a live tree from a tree farm 15 minutes away. And it was cheaper!

 

 

Christmas Tree Farm Trip

 

 

We picked out a nice 7 foot tree, David committed tree murder, and Christmas arrived Thanksgiving weekend in our household. I love our tree!

 

Let Christmas Begin!

 

 

Wrapping up Treatment

As I approach the last week of radiation and chemo I have to say I'm relieved, excited, and apprehensive. This will be the end of my radiation treatment, but will actually only be a short break for me from the chemo. I will get a few weeks off from the 6 weeks straight of chemo, but then I'll go on the standard 5 days on 23 days off routine for the next year or two. The dose I will be taking will be twice what I'm taking now, and I'm worried again about how my body with react to it. Will I feel sick? Tired? Will I need to stay home from work a few days a month? Every month? I really hope not, but only time will tell. The enormity of the unknowns with my brain tumor drive me crazy sometimes.

 

 

Moores Cancer Center - My Second Home

 

 

Right now I am just trying to stay optimistic. Things with surgery, radiation, and chemo have all gone about as well as they could have. Sure, there are several points in each day where I feel a bit off. Either my stomach turns, I have a lump in my throat, food just doesn't taste right, or my head is buzzing a little. I can tell there are weird things going on with my body, but the effects that I do notice are mostly nuisances. Compared to what I was afraid of though, this is nothing.  Best of all, I'm running 4-5 days a week again! Exercise is believed to help fight radiation fatigue, and I think running has been part of what has kept me so strong, healthy, and happy. Running, I thank you!

 

 

 

MCM & Miles for Mokie

Its hard to believe that two months ago I was deep into my training for the Marine Corps Marathon (MCM). When I found out on Sept 21nd that I had a brain tumor, one of the questions I asked my neurologist was if he thought I could still run a marathon next month. I remember him staring at me dumbfounded for a while before saying that I shouldn't plan on it because I was going to be "very busy" going forward. Well that was a true statement! Doctors appointments, surgery, follow-up appointments, six weeks of radiation 5 days a week. I'm very busy to say the least!

 

Marine Corps Marathon
When I found out that I couldn't run MCM I immediately emailed the race organizers to see if I could transfer my bib to another runner or get a refund. Unfortunately I had missed the transfer date by a few weeks but they informed me that I still had the opportunity to defer for next year's race. I thought about it briefly but decided that I didn't want to pay the transfer fee just to maybe run next year. Right now I'm not sure that I will ever run another marathon again. Not because I don't think I could physically, but just because I don't think I want to go through that level of stress it takes to train, and I'm not sure I want to subject myself to such physical stress on race day. Who knows, things might change, but right now I wouldn't be surprised if 18 fulls was my limit. Only time will tell ...

 

 

My Own Team Mokie Tank!

 

 

Since I wasn't planning on defering my entry I had a bib that could be used (illegally - shh!) and asked a few friends if someone might be interested in running in my place. Enter Awesome Amy! Amy (the Executive Director of Girls on the Run San Diego) quickly stepped up and said that she'd run in my place. With 3 1/2 weeks until race day. With not having run further than a half marathon all year. With having her last marathon several years in her past. Oh yes, Amy is a badass! She ramped up her long run that coming weekend, ran 20 miles the following weekend, and then started her taper. This is obviously not a training plan the experts would recommend, but it worked!

 

 

Team Mokie Pre-Marathon

 

These Ladies are Tough!
(Please notice the run-by bicep squeeze! haha)

 

 

 

 

 

Team Mokie

On Sunday October 28th three of my GOTR friends and my "marathon wifey" Christina from San Francisco all flew out to DC to run the race. Little did I know I'd be running with them in 2D form! Christina  had made a little cut out of me complete with a Glam Runner tutu and my Marathon Maniac number. My friends took turns holding "me" throughout the course while proudly sporting their Team Mokie tank tops. Sniff sniff. When I woke up on race morning and saw pictures of them getting ready to race the tears started flowing. They were tears of happiness that I had such great friends who were doing something so sweet for me, and they were tears of heartbreak over the fact that I couldn't run myself because of all that has happened to me. Throughout this diagnoses over the past few months I have never felt like a victim and have never been angry that I have cancer, but for a few hours that morning I was so sad about what the tumor had taken from me. It took running this race, it took away my feeling of being a healthy person, and it had taken away the confidence of "knowing" that I'd grow old some day. :(

 

 

2D Mokie Ready to Run 26.2

 

 

Christina & 2D Mokie - MCM Finishers!

 

 

I moped around for a bit that morning but luckily there wasn't time to mope all day. Why? Because my other amazing GOTR friends had arranged a tutu-themed Miles for Mokie walk for me down by the Harbor where I usually do my long runs. In addition to this David's parents made the long drive form West Virginia out to DC to cheer my friends out on the MCM course ... AND .. they of course made signs! Between getting automated text updates of Team Mokie's progress and hearing from David's parents each time they saw the girls go by I started to cheer up a bit and get excited that my friends were out there having a great race.

 

 

David's Parents Signs

 

 

 

Miles for Mokie Walk

David and I managed to get ready and get down to the Harbor by 8am that Sunday (look at me all punctual!) to meet up with the group. It was fun to see everyone wearing their Team Mokie Love Shirt and/or a tutu! Annie also made a box of Team Mokie tiaras and a bunch of signs. Mass picture taking ensued, and then we were off!

 

 

Miles for Mokie Walk Start

 

 

Even David Wore a Tiara for Me! Love!

 

 

 

We decided that we'd walk 1.55 miles out and back and make it a 5K. I'm sure we looked like a bunch of crazies walking along the harbor in tutus! The walk was a lot of fun and a really touching thing for my GOTR family to do for me.

 

 

Team Mokie Covered 60 Collective Miles!

 

 

My Cousin Giselle Brought Her Family from LA

 

 

Who's Having Tutu Much Fun?

 

 

Back to Running

Since its now been over a month since my surgery I'm cleared to run! I talked to my oncologist about the risks of running and he said that I should be okay to get started with some light activity. This morning David and I put on our running shoes and I headed out to RUN (not walk) for the first time in 31 days. But hey, who's counting? We hit the trails in Balboa Park and did an easy 2 1/2 miles with a few walk breaks. It felt weird, but it felt great! I'm probably just going to stick to easy 3-4 miles runs for the time being, and just appreciate that I'm getting outside and getting some blood pumping.

 

Miles for Mokie

Thank you so much to everyone who participated in the Miles for Mokie Challenge on facebook. I loved seeing everyone's updates and photos and words of encouragement. It really made me smile over the past month to know so many people were thinking of me and I'm forever grateful for all of the kind words, encouraging wishes, and heartfelt prayers. If we could cure cancer on love alone, I think we'd have this thing beat. Thank you!!