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!

 

 

 



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!