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
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
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.
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.
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.
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.
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.
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:
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.