2019 Disney Princess Half Marathon Recap!

All of the hard work paid off – I finished the race!!

I’m still in disbelief that I’m writing this post. I thought I would be blogging about how awful, hard and grueling the race was, and that I got caught by the pacers and had to ride the “slow bus” to the finish line and miss out on my medal.

BUT – I experienced the exact opposite!! I had an absolute blast (until about mile 9 when the sun came out) and although I was the last one in our group of 15 runners to cross the finish line, I crossed it! I need to sincerely thank my entire group of friends and family who ran the race with me, and those who came all the way to Orlando just to cheer us on. Together, we raised over $7k for brain cancer research at MGH!

Now, let’s get to the details. I was terrified beforehand and didn’t know what to expect, so maybe this will help convince some of you to join us next year. 🙂

One of our groups walking towards the starting area around 4am! From L to R: Maisie, Steven, Becca (me!), Cam, Claire, Margie, Jerry, Saeger, Ryan and Erin.

If you are looking to do your first Half Marathon, this is a GREAT one to do!

I’m not the best runner. I do it a couple of times a week at the gym, but never for more than 3 miles. And I jog VERY slowly. I was pleasantly surprised to find that this race had lots of different types of runners! Some people ran, some people did run-walk intervals and some people walked most of it (myself included!). I never felt out of place, and everyone around me was so incredibly supportive. It’s a very friendly environment and there were plenty of men running the race too! (Although it is definitely female-dominated).

The Princess Half Race Expo is Awesome! Save up so you can Shop!

Expo at Disney’s ESPN World Wide of Sports

I am a shopper. It can be a problem. I know good shopping when I see it- and the commemorative items they have at the Run Disney expo are awesome!

I had SO much fun browsing all of the sponsors products, as well as the official Run Disney merch. I got a pullover, tank top, wine glass, Dooney & Bourke bag, magnet and pin. I can’t buy anything else for the rest of the year after that shopping spree…but the Expo was a blast! Also, they have amazing frose for sale (white chocolate Mickey Mouse champagne toppers included). Make sure you give yourself at least 4 hours to get to the Expo, get your race bib (this part takes less than 20 minutes), browse all of the shopping, and get the bus back to your hotel. This isn’t something you want to skip!

The worst part was having to wake up at 2:30am to get to the starting area.

My mom and I in front of the pre-race dance party! (It’s 4am…)

I was hoping this was a myth, but nope. You really do have to wake up between 2:30am-3am if you are staying on Disney Property to make it to the bus in time (the last buses depart hotels at 3:30am). That part was HARD, but after taking a quick shower to wake up the adrenaline set in and I was ready to go! There is plenty of coffee available at the starting area if you don’t have time to grab it in your hotel on the way out. They also have a killer DJ playing loud dance music by the starting area…if the coffee doesn’t do it’s job, the music will!

Choose Your Running Costume Wisely!

Someone had given me this advice beforehand, but it is true! We all get excited with the crazy Disney costumes we can come up with, but make sure you are comfortable running 13.1 miles in whatever you choose to wear. I ended up changing costumes last minute because I had tried running in my Brave costume the week before the race, and the tank top was way too heavy. I also wore my tutu around the house (and the Disney’s Boardwalk!) and didn’t think I’d be able to keep it on for 3+ hours, so I ditched it. You want to be comfortable, you’re in it for the long haul! I also would stay minimal on accessories…I saw someone dressed as Rapunzel running with a Frying Pan….her arms must have been so sore! Don’t get me wrong, costumes are one of the best parts of this race…just make sure you can run in whatever you pick!

The “Balloon Ladies” are REAL.

If I had been carrying my phone on me, I would have snapped a picture because the existence of the infamous “balloon ladies” was unclear during my pre-race research. I confirmed it with my own eyes – THEY DO EXIST! There is part of the race where you run up an off-ramp (by the Green Army Men!) and loop over the highway overpass. When I was at that part of the course (somewhere around mile 9), I saw the balloon ladies walking briskly with Mickey Mouse balloons tied around their waists. The balloon ladies are the last ones to cross the starting line, and they maintain a 16-minute-mile pace (the required pace for RunDisney events). While there was no one directly scooping people up behind them, there were four buses parked just before the overpass with their destination sign reading “PARADE BUS”. If the Balloon Ladies pass you, you are subject to being invited on the Parade Bus, which will bring you to the finish line area.

Corral Placement is Key.

If you are worried about the required 16-minute mile, try to move as far up as possible to the front of your corral. Because there are so many runners in this race, there are several waves of runners in each corral. It takes over an hour for everyone to get across the starting line. We were in corral F, but we were wave 5 out of 9 waves in corral F (and there were corrals A-H). The required 16-minute pace starts from when the Balloon Ladies cross the starting line, and they are the LAST ONES TO CROSS. So, if you are slow and you are in wave 5 in the F corral, you will have more time than being in the last wave of corral H.

If you have a medical condition, Disney is FANTASTIC.

Part of my brain cancer diagnosis includes living with a seizure disorder. We know that my risk of having a seizure is increased by exercise. (In fact, that’s what triggered this whole thing in the first place!) I was EXTREMELY comfortable running the Disney race. They had medics EVERYWHERE. I was trotting by one guy who had stopped to stretch his calf, and a security officer was checking in on him within probably 20 seconds. If you have any type of condition (and your doctor has cleared you to participate), choose this race. In case of an emergency, Run Disney will have you covered!

It’s True, You Do NOT Get A Medal Without Completing the Race.

When I registered for the race, I just assumed all runners got a medal, whether they finished or not. NOPE! It’s an absolutely beautiful medal, but you’ve gotta work for it! I had heard this was  myth, so I was unsure going into the race. But man, I am glad I finished because it turns out they were NOT giving medals to those who got picked up by the Parade Bus! (Totally fine, but if you’re someone that’s only in it for the medal and you don’t think you can complete it, you may want to skip this one).We overheard a friend on the cell talking to her friend who got caught by the Parade Bus, who said they wouldn’t be getting medals. 😦  If you do earn your medal, it’s gorgeous, sparkly and heavy – totally worth the sweat!!

Don’t make any park reservations for the day of the race.

I made the mistake of booking a late lunch and making FASTPASS reservations for Sunday afternoon (post-race). If you want to make FASTPASS reservations, go ahead – but booking (and no-showing to) Disney restaurants comes with a $25 fine so I would steer clear of that. I thought that after the Half, we’d go back to the hotel, shower, and head on over to Hollywood Studios wearing our medals proudly and taking pictures all over the park. Maybe we’d have some celebratory champagne…

NOPE. I limped to the bus back to the hotel, took off my shoes, put bandaids on my blisters, and promptly passed out for a 5 hour nap. We missed our lunch reservations, wasted our FASTPASS plans and when we did wake up, we hung out by the Yacht & Beach Club pool, which does not require a park pass. The point is – you will probably be more tired than you think! If you are strong enough to peruse the parks post-race, good for you! But if you want to be conservative, plan to spend the day by the hotel pool. 🙂

Completing the Half Marathon was the BEST Feeling.

My feet had given out around mile 10. In fact, I’m still waiting for the blood blisters on my feet to heel (another tip: don’t wear new sneakers for a race…yes, I am a newbie). I was in SO MUCH PAIN for the last 2-3 miles, but the adrenaline kept me going. My personal cheer squad (and running buddies, Steven and Erin!) kept me going. There were a few moments when I wanted to give up, but I’m so glad I didn’t because crossing that finish line was the BEST FEELING! It made the hours at the gym worth it. It made me feel like I could still accomplish big things, despite my diagnosis. It made me realize how awesome of a support system I have. It felt AMAZING. I totally ugly/happy-cried as I crossed the finish line.

In short, if you are on the edge – DO IT! This is such a fun race, and if I can do it, YOU CAN TOO!!! We would love to have you be a part of our group in 2020. 🙂

Scanxiety and MRI Day

It’s Sunday night, and the feeling is all too familiar. Sure, the Red Sox are playing in the World Series and Sunday Night Football is on…but my routine MRI is scheduled for 10am tomorrow, and it’s all I can think about. Usually, people only see my “GOOD MRI! Stable results!” posts on facebook and instagram after MRI day. I’ve been lucky enough to make that post 3 times in the past year, so people may not realize how exciting that truly is. In order to understand, I want to walk you through MRI day for those of us battling brain cancer.

Every 3 months, I have to get an MRI. If you’ve ever had one, you know they’re not fun. The thing is, I know that my tumor is going to start growing. My doctors and I have discussed it at length. It’s just a question of when – and that’s what this MRI is checking in on.

MRIs aren’t easy for me. Because of my tumor, it’s not just zipping in and out of the machine for a quick image. I have to arrive 30 minutes early to change into two uncomfortable, scratchy “one size fits all” hospital gowns, get my blood drawn, and get an IV put in. Then, I have to sit in a cold waiting area with my IV in (but capped) for anywhere from 20 minutes to an hour depending on how long the wait is.

Finally, when it’s my turn, I have to lock my personal items in a locker and go through a metal detector. Fun fact – You absolutely cannot wear metal into an MRI machine as it could be deadly. An MRI machine works by using large magnets to create strong magnetic fields, 1,000 times the strength of a refrigerator magnet. They have the metal detector to make sure I haven’t forgotten a bobby pin or neglected to take off any jewelry.

Me at my last MRI. The hospital clothes are AWFUL!

Next, I walk into the freezing-cold room and am required to put bright orange earplugs in. They don’t work well, feel like cheap foam and are always falling out. Once those are in, I get to lie on my back on the hardest board ever (it’s completely flat with no padding) and get positioned. They put a cage-like mask over my face to keep my head in place, as I cannot move my head during the entire MRI since they’re imaging my brain. They give me an “emergency call button” which looks a lot like a stress ball, and the machine starts moving and I’m basically in a tiny metal cocoon.

For the next 25 minutes, I am lying completely flat listening to extremely loud sounds – anything from clicking to high pitched screeching to very low tones (those ones are the most tolerable). If I have to sneeze, I can’t. If I want to yawn, I can’t. I have to be perfectly still, since they’re imaging my brain. All I can do is think…and the only things crossing my mind are:

• What are we going to do if the tumor is growing?
• Will they keep me on wait and watch, or will they want to treat it?
• Wow, that was a loud bang – holy crap!
• I forgot a few words yesterday…that means the cancer is growing
• God, I hope it’s not growing
• Shit, did I feed Mickey before we left?
• In less than 2 hours, I’ll have the results…

Not fun thoughts. (Steven always reassures me he’s fed Mickey).

Eventually, the technician comes over the speaker and says “OK Rebecca, we’re going to give you the contrast now”. They slide me out of the machine, but they don’t take the mask off so I still can’t move. They inject the contrast into my IV (the contrast is what lights up my tumor on the scans), and I get a really salty taste in my mouth. Then, I go back into the machine for another 20 minutes of loud banging.

Finally, when the technicians are happy with the imaging, I get to leave, but not without a bad headache. I meet Steven in the main waiting area, and we head to the other side of the hospital where my oncologist’s office is. We grab a coffee, and wait for an hour until my results appointment. That hour is probably when the scanxiety is at its worst.

 

Goodnight!

Rest in Peace, Senator.

I haven’t blogged in a while, mostly because life is going fairly well for me…all things considered. I need to feel inspired in order to write about brain cancer, since my coping strategy is to try to keep it in the back of my mind and writing about it brings it to the forefront.

Unfortunately, inspiration hit today with the passing of Senator John McCain.

I have so many feelings on this, and am not sure how to express all of them.

I will start with emphasizing how ANGRY I was when he was first diagnosed with brain cancer. I remember learning that he had been diagnosed with a Glioblastoma, which is a Stage 4 Glioma. (For reference, I have a Stage 3 Glioma). THERE IS NO CURE FOR GLIOBLASTOMA. When doctors reference survival rates, they are referring to the amount of time someone with GBM has left. People diagnosed with GBM are usually dead within 12 months of diagnosis.

I was diagnosed with brain cancer in March of 2017, and Senator McCain was diagnosed 4 months later. At the time, I was very angry as I was still coping with my own diagnosis. I was getting so mad at people who would tell me “a positive attitude beats cancer! Fight on, warrior!” If it was that easy, I’d put on my boxing gloves while singing songs about sunshine. Unfortunately, that’s not how it works. Don’t tell me about the essential oils that will miraculously cure my cancer, or the special diet I need to go on. It’s maddening. If essential oils cured cancer, I’m pretty sure cancer would be eradicated.

When I learned Senator McCain had GBM, I knew his time was limited. And to hear so many people – including his former Presidents and senate colleagues – say that John McCain would beat this cancer because of his fighter mentality… well, it made me realize how uninformed people are. Being diagnosed with GBM is literally a death sentence, and it’s devastating.

Right now, I’m feeling sad and angry.

I’m heartbroken for the McCain family, and if you haven’t read Meghan McCain’s post on twitter today honoring her father, you should. It will bring tears to your eyes (or if you are me, waterworks…) but is also a beautiful tribute.

I’m angry that brain cancer research is one of the most underfunded areas, and yet the cure rate for this cancer is significantly lower than other cancers. I’m angry that the media reporting on John McCain’s diagnosis misinformed so many people, giving them false hope that the Senator could “beat” this diagnosis. He never had a chance.

I believe John McCain knew from the moment he was diagnosed that he would succumb to this disease. But in typical John McCain fashion, he wanted to give the public hope – and show them his courage and strength.

We lost a father, husband, son, leader, teacher, role model, and truly great American today, and my heart is broken.

Rest in Peace, Maverick.

 

 

 

 

 

 

 

Can I ever consider myself a cancer survivor?

If you google “Can you survive brain cancer?” here is the result:

“When you are diagnosed with a serious illness, like a spinal cord or brain tumor, learning about survival rates and prognosis for your condition can make you panic even more. … But spinal cord and brain tumors are very rare forms of cancer, accounting for less than 2 percent of all cancers.”

Thanks, Google. So uplifting!

I remember right after I was diagnosed, I went through a two month period where I was panicking. I didn’t understand my prognosis, and was too afraid to ask my oncologist (I was afraid of the answer). I had, however, convinced myself that I was going to die within a couple of years thanks to Dr. Google. My anxiety over this got to the point where my husband finally made an appointment with my oncologist so that we could sit down and discuss my prognosis.

Thank god we finally had that conversation. I was pleasantly surprised when my oncologist said thanks to my IDH mutation, I was looking at a much better prognosis than other cases of high-grade gliomas. When I asked what that meant in terms of years, she showed me and Steven the latest statistics and because patients in this study are still alive after 16 years, she couldn’t give me an answer. Talk about HOPE!

So, although I have a good prognosis, I will always have brain cancer. 

There’s got to be a term for those of us with brain cancer, who are living MRI to MRI. There is no true “remission” for us. Brain tumors embed themselves into your brain tissue, and the cancer cells are so microscopic, you can never fully get rid of them. After treatment, if they’re not growing, that’s considered good. If they start growing again, you may need another surgery, another round of radiation, or more rounds of chemo. There’s really just no way of knowing, and that’s what makes brain cancer so terrifying.

This leads into the question: can I ever really consider myself a cancer “survivor”? I’ve always thought of a cancer survivor as someone who has beat cancer and is in a true remission, with no chance of the cancer coming back. With brain cancer, reocurrances are so common that they’re almost expected. Those of us with this disease are constantly worrying about if the cancer is growing, and that’s why you may see us write about “scanxiety”. Our MRI’s every couple of months tell us if our tumor is stable or if it’s growing, and it’s nerve wracking each time we wait for the results.

Although I am done with my treatment (for now…hopefully forever!), I don’t think I’d consider myself a cancer survivor. Sure, I’m surviving WITH cancer, but until doctors can find a cure, it’s always going to be there. I’ll always be a patient, and I’ll have MRIs every 2-3 months for the rest of my life. There’s no escaping the cancer.

When people ask how I’m doing, I can’t say I’m in remission. What I typically say is “I’m doing well”, and just leave it at that. I think the best term to describe it would be “stable”. I’m stable until the next MRI, but I’m not a cancer “survivor”.

What are your thoughts on the topic?