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!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Brain Tumor: Post Surgery

It has been a busy few weeks since my surgery (more about it here) filled with more visitors, numerous doctors appointments, and various other things. On the same morning that David's mom was leaving town and my Mom and step-father were heading back up to Orange County David's brother Ken was arriving! Ken flew in from DC to spend five days with us. Upon landing his heart and stomach were probably set on the obligatory stop at In-N-Out, BUT .. I hijacked those dreams with a Pho lunch with my mom instead.

 

 

 Pho!

 

 

Not to worry, we hit In-N-Out later. His visit was pretty low-key and involved going out to eat a few times, seeing a movie (Argo - not bad), and spending a good amount of time relaxing on the couch. Not the most exciting way to entertain a visitor, but I wasn't exactly at my prime. Sorry Kenny!

 

 

In-N-Out Time

 

 

Obligatory Shot by the Water

 

 

Just Like When David's Dad & Mom Visited!

 

 

First Week Post-Surgery

In the week following my surgery I worked from home the first few days, and then returned to the office for the last two days of the week. It was really weird to be back after 10 days. One co-worker came by and said he was expecting me to come back with my half shaved head. Well, I don't disappoint! I showed him all the hair they shaved off and then put my remaining hair back into place. Everyone said you couldn't tell that I had hair missing. Good! I'm super self-conscious of how thin my hair looks now and I'm worried about the shaved part showing. So far a little hair clip seems to keep things tidy and arranged.

 

On the Thursday of the week I returned to work I had my first social outing scheduled. It was time for the annual Lunafest! Lunafest is a film festival sponsored by Luna that showcases films by women, about women, and for women. Girls on the Run San Diego was fortunate enough to be the local beneficiary once again for this film festival and was helping put on the event. I came by to mingle and say hi to all of my GOTR friends but didn't end up staying for the films.

 

 

Lunafest San Diego

 

 

The weekend following Lunafest we got our next visitor! And sadly our last for a while. My friend Jenny from San Francisco came into town to spend  the weekend with us. Rinse and repeat the same routine of dinner, movies, couch. My place is the party spot! 

 

 

Walk to the Dog Park with Jenny

 

 

 

One movie we watched was Fat, Sick, and Nearly Dead. This movie came highly recommended by one of my coworkers. After watching it he and his wife bought a juicer and he kept talking up the benefits of juicing to me. I was a bit skeptical going into the movie but came around by the end. At this point I'm willing to try anything that isn't too crazy that can help boost my health and immune system. We bought a juicer the next day, and Jenny bought one the following day.. and flew home with it! Now that is dedication.

 

 

Our New Juicer!

 

Apple, Carrots, Celery, & Kale

 

 

 

Just as with Ken's visit,  poor Jenny had the misfortune of visiting during a time that I still had a number of doctor's appointments scheduled. She came with us one Saturday morning to the reproductive clinic for my last daily checkups, but left on Sunday a few hours before the great egg harvest of 2012. The whole process of egg harvesting is really amazing. The way drugs can make you go from naturally producing one egg to being stimulated to produce dozens is incredible.

 

 

Fridge Full of Fertility Drugs

 

 

To prepare for the harvest David had to give me nightly hormone injections in my stomach for a week. Yes, fun times had by all! We started on a Saturday and finished the next Saturday. Things were moving along so quickly with my body that the harvest was able to occur that Sunday, several days earlier than they had imagined. The harvest was a one hour procedure that involved general anesthesia. While I was a bit nervous about going under again, I felt like that (and just about everything that comes my way now) pales to being out for 6 hours for brain surgery and in the ICU for three days following.

 

 

Preparing for Surgery

 

 

The procedure went quickly and I was only left with slight discomfort. I had stomach cramps for the next week or so and felt bloated, but now I feel back to normal. AND ... I now have the next generation of Monikas tucked safely away from the harm of the chemo drugs! I'm so glad I did this and so thankful that it all worked out. Thank you Mom, Dad, Livestrong, and Walgreens for your help! (More about my decision to do Emergency IVF here.)

 

 

The Great Egg Harvest Was a  Success!

 

 

Second Week Post-Surgery

Two weeks post surgery and I was fully back to work as normal. This week is what I'm now cherishing as my last "normal" week. I only had two doctors appointments and physically was feeling pretty good! In my first appointment I was molded for my radiation mask which I would wear during each treatment to keep my head from moving.

 

 

Radiation Mask

 

 

The second appointment involved removing the staples from the two surgical sites on my head (ewww!) and luckily barely hurt. I'm now staple free! If only my hair would grow back a little more quickly.... Sigh.

 

 

Hello Kitty Nails - Why not?

 

 

During lunch one day last week I also went over to my usual nail salon and had my nails filled. While I was there I thought what-the-heck and asked them to paint Hello Kitty on one nail. I had gotten the idea from Instagram and had asked if they could do it last time. The lady told me no they couldn't then, but they'd practice and try next time. And they did! Its not exactly the professional image I want to portray but its fun for a few weeks. Hey, I need small joys in life right now!

 

 

mAss Kickers

Sometime last week I started looking online at some brain tumor resources. I subscribed to the newsletters for the National Brain Tumor Society and the American Brain Tumor Association. I had previously also had come across mAss Kickers from the referral of several friends. mAss Kickers was started by a local San Diegan and brain tumor survivor Eric Galvez. I found a link to Eric's facebook profile on his blog and after accidentally sending him 10 duplicate messages (thanks Facebook!) I finally friended him so I could try to post on his wall instead.

 

 

Eric - Chief mAss Kicker

 

 

Crazy timing, but that night he was hosting a mAss Kickers event downtown in the Gaslamp and invited me to join. I wasn't sure we'd be able to go since David is a huge baseball fan and I'd already made him miss watching so many games, but fortunately since he is the BBITW (best boyfriend in the world) he immediately said "Let's go!" and it was settled.

 

 

Tumors Suck!

 

 

The event was at a bar downtown and was named the first annual "National Tumors Suck" day. :) We met a number of people there including two others with brain tumors! I now know three young people with brain tumors! :oP Small world but it turns out that one even has the same doctors as I do. It was really cool to hear other people's experiences with surgery, radiation, chemo, etc. The event also had a few different people give toasts and words of inspiration to others as well. Being around all of those fellow "thrivers and survivors" really made me feel good. People there were in different stages of treatment and some were at difficult points with their diagnosis, but everyone seemed upbeat and positive. My kind of people!

 

 

Brain Tumors Unite!

 

 

When I got home that night I was looking at the mAss Kickers flyer and the definition of a mAss Kicker made me smile. It defined me and David!

 

1. noun. Someone who gets an intimidating diagnosis, hears the words “we found a mass in your ____(insert important body structure here)”, and refuses to let it control their life.

 

2. noun. Friend or family member of a patient dealing with an intimidating diagnosis. They are essential contributors to the mAss Kicking team. 

 

 

Third Week Post-Surgery

Its now the third week post surgery and my radiation and chemo pills have begun. The radiation isn't as bad as I thought it would be. Sure, having your face bolted into a table with a tight mask on isn't fun, but luckily each treatment session only lasts about five minutes. The mask is made of mesh and although it has airholes was kind of suffocating me. The girls were nice enough to cut a mouth hole for me on the second day. Maybe next week we can draw eyelashes on my mask as well. jk

 

 

The Magic Radiation Machine

 

 

The chemo pills so far haven't been making me sick but an antibiotic I'm taking Monday, Wednesday, and Friday nights is really putting me out of commission. I took the first pill Monday night before bed and almost instantly felt sick. I felt queasy all night up until Tuesday morning which involved hours of being sick. That was fun. I saw my oncologist on Tuesday and he said that instead of taking the pill before bed I could take it with dinner instead. I did that last night and felt a bit less queasy, but this morning I woke up with a terrible headache which overshadowed the queasy feelings and made me feel terrible for most of the day. I had emailed my doctor last night when I started to feel sick and he told me to move some of the other medications to other times as well. Let's hope third time is a charm and this Friday night and Saturday morning I feel okay!!