2019 Disney Princess Half Marathon Recap!

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

IMG_5709

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. 🙂

IMG_5689

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!

IMG_5624.jpeg

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.

IMG_5679

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!

IMG_5710

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.

IMG_5674

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. 🙂

IMG_5619.jpeg

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. 🙂

IMG_7646

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.

Untitled design-2.png

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.

IMG_3900.JPG

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.

mri-scanner.jpgFor 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.

Untitled design-3.png

 

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.

mccain

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.

 

 

 

 

 

 

 

My first “official” 5k! (Prepping for Disney.)

As I sit here with my feet up on the couch, sipping a glass of post-race wine and trying to stretch out my calves…I can’t help but think – WOW! That was actually fun!

IMG_3097

I just finished my first official 5k race (race bib and all!) and woof, I am tired. But, I’m training to do a half-marathon in February, and my trainer told me I need to start running legitimate races in order to prepare myself for the Disney half. (Before today, my only 5k’s were done on treadmills at my own pace.)

Steven, my younger brother Cam, his girlfriend Maisie, and a few of their friends all signed up and we ran the race together. It was the Cambridge, MA Freedom 5K, so it had

IMG_3099

Me and Cam post-race

a patriotic theme and we were decked out in #Merica gear. I thought because people get dressed up for it, it was going to be more of a “fun run” – but people took it pretty freakin’ seriously! The winner ran a 15:28 5k, which was an average 4:59 mile…whaaat?! I think I was hitting the 1 mile mark at 16 minutes…

I ended up finishing with a time of 46:57. Not a great 5k time for me, but again – this was my first 5k outside and running outside is SO much harder than on a treadmill! My butthead brother ran a 21:40 minute 5k and Maisie ran 24:55. Overachievers!

 

Anyway, I have some takeaways from the race…

  • Everyone is friendly and supports each other
  • I definitely have a competitive streak in me
  • I need to train harder for Disney
  • Downhill stretches are AWESOME
  • Running outside is way harder than running on a treadmill
  • These races are FUN and so are the after-parties!

Overall, it was a lot of fun and even though the actual race was hard, I enjoyed it. I had toIMG_3092 walk some (OK, a lot) of it – but running the final stretch and crossing the finish line was such an adrenaline rush! And it felt great – I’ve always wanted to do something like that. I was very nervous at the beginning when we were lined up in the starting corrals, but once people started moving I felt totally fine (even though I was in the back for the most of it!).

I was a runner before all of this cancer “stuff” started, and back in high school I would go for 3-4 mile runs every morning. It sounds silly but running this race is bringing me back to that state of mind, which was a very healthy place for me. I’m going to keep on training, run outside more, and keep prepping for Disney! I’m excited to do more races!

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!

doctor

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.

Coping+With+Scanxiety

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?

IMG_2650

Dealing with Jealousy

I can openly admit, I’m jealous of all of the things cancer has taken from me. I often wonder if other people in my situation feel the same way.

12938323_10101213753919456_5165543849475150707_nI was scrolling through facebook earlier, and saw a post from the young couple who bought our first home from us last summer. I had just been diagnosed with brain cancer when we decided to put the house on the market. Steven and I had decided that I’d need a newer, updated house with a fenced in yard for our 75 pound dog while undergoing chemotherapy since Steven frequently travels for work.

Our town is a seller’s market, where houses receive multiple offers. We received a letter from a young couple that they submitted with their offer, telling us how much they loved our house and couldn’t wait to start a family in it. The letter actually upset me, because that’s exactly what Steven and I had wanted. We bought that home with starting a family in mind, and had written a similar letter to the previous owners when we bought it. Now, our lives had been turned upside down and we knew that would never happen in our first home.

13681003_10101261987613746_2433451670141704020_n

Me and Steven in front of our first home the day we closed.

Anyway, this young couple announced today via facebook that they are expecting their first baby. I’m not sure why, but I immediately felt jealous. That had been our house, that had been our plan, and now they were living there decorating their nursery (bet it’s the back bedroom, which is perfect for a nursery) while I’m battling terminal brain cancer. It’s not this young couple’s fault – so why do I feel such jealousy towards them? Has my cancer diagnosis made me that spiteful? Am I just trying to blame anyone I can for what’s happened to my life?

And it’s not just young couples starting families that I’m jealous of. I’m jealous of people my age who are excelling in their careers while I can’t even work. I was always very career-oriented before all of this started.

I’m jealous of people whose biggest problems in life are that their cars aren’t working, or that they had a falling out with a best friend. Sure, those are problems and it might seem like the end of the world, but you can move on from those problems. You can’t move on from terminal cancer.

22195370_10101585417133396_4564827759989633877_n

I just lost my aunt to ovarian cancer last week. Another loss to cancer. I was very close to her, and miss her so much. She was the kindest, most unselfish person I knew, and I wish I had asked her about her thoughts on this. I don’t think she was jealous of anyone. I think she was happy with the life she had, and loved her friends and family. I need to learn how to be more like her, and care less about the things I can never have. I hate feeling jealous of others, because it’s not their fault I have this cancer diagnosis. But I can’t shake this jealousy. Does anyone else feel the same way?

 

Thanks for reading/letting me vent.

xxx Becca

Disney Princess Half Marathon! Raising Money for Brain Cancer Research.

Who wants to run 13.1 miles with me to raise awareness for brain cancer?! It’s on Sunday, February 24th, 2019!

DSC_4604

For those of you who know me, you know I’m not the best runner. I used to be OK at it, but the past year has really taken a toll on me and I’m slowly getting back in shape. Let’s put it this way – before I committed to doing the Disney Princess Half Marathon, the only time I would run was if I was being chased by a bee.

That’s why my mom joked the other day that I’d do ANYTHING for a trip to Walt Disney World. Including running a half-marathon, when I’m not a runner.

images

She’s right – I would do anything to go to Disney as I am a HUGE fan, but I’m committing to this half marathon to raise money and awareness for brain cancer research.  Mass General Hospital has an incredible Neuro-Oncology Division (ranked 3rd best in the world) and I am incredibly fortunate to be treated there. The only way I can think of to give back is to support their Neuro-Oncology Program and raise money for research. MGH is one of the only places in the world to offer Proton Beam Radiation, which is important for all cancers, but PARTICULARLY brain cancer due to the need for precision when it comes to radiating the brain.

images-1I committed to the 2019 Half Marathon and started training back in December, when I was finally cleared for exercise post-craniotomy. I’ve been working with a trainer to get ready for this, but I still have a LONG way to go. Right now, I can run/walk about 5 miles. That’s not even HALF of the half! But, I’ve found training for this to be incredibly therapeutic. It feels awesome to have a real goal. Mentally and physically, I feel stronger than I have in a long time. Running helps take my mind off of all this cancer “stuff” – and if I’m going to train for a race, why not make it a fun one!? I mean, LOOK at this course!

PrincessMap

It starts very early in the morning, before the park opens – so you get to run by the Castle and all the fun attractions with no crazy crowds! (Aside from other runners, of course.) The course also has all of your favorite Disney Princesses cheering you on – I can’t wait!

Unknown

I have friends and family running this with me, also helping support MGH’s Cancer Center, but really supporting me and making sure I cross the finish line. Knowing me, I’ll burst into tears when I finally do! But I can’t wait!

 

Lastly, with the help of MGH, I have set up a page (through their portal) to begin raising money. 100% of the money raised will go to MGH. None will be used for the Disney trip. If you’d like to support my team, you can donate here! Any little bit helps. 🙂

https://because.massgeneral.org/fundraiser/1366157

Oh, and if you’d like to run the race with my team – we’d love to have you join us!!

Is “cancer discrimination” a thing?

While in London, I had an experience at the hotel I was staying at that made me think about this question. Long story short, our 5-star hotel refused me any type of spa treatment because their policy is to only treat cancer patients (er, survivors?) who have been in remission for 12+ months. When I checked in, I booked an appointment and walked over to the spa the next day.  After filling out their standard health questionnaire, I was quickly told about this policy and was refused treatment. They also did this in the spa lobby, in front of other guests. I won’t share the name of the hotel on here, but here’s a picture of this beautiful but cruel hotel:

Unknown

When I explained that there is no remission for my type of cancer, they were awkward and simply apologized and said they couldn’t offer me a massage or facial. It felt like I had literally been booted out of the spa. I won’t go into details about what happened after I complained to hotel management, but it got me wondering – is cancer discrimination a thing?

What other areas of my life have I felt discriminated against because I have cancer?

IMG_2523When people learn I’m still on long-term disability, despite being off of chemo (for now), people ask why I’m not back at work. “Don’t you want to keep busy? Aren’t you bored? It must be nice to stay home all day and get a paycheck!” Yep, people really say these things! And trust me, it’s incredibly uncomfortable.

Sorry, but brain cancer doesn’t really show outwardly (aside from some awkward haircuts and a big gash from one side of my head to the other). I’d take going back to work over having a terminal cancer any day. I’m still on long-term disability for several reasons:

  • Headaches
  • Constant doctor appointments
  • Anxiety and stress that is out of this world
  • Trouble concentrating
  • Nausea
  • Fatigue
  • Trouble with depth perception

…I could go on and on, but although I might look fine, I am not ready to go back to work yet. And my medical team agrees. It feels pretty crappy when people judge me for still being home. (Also, I’m only 2 months off of chemo!)

I’m going to keep thinking about this, but for any fellow brain cancer fighters (or cancer fighters in general, for that matter), I’m very curious to hear your thoughts on this. Please feel free to leave a comment or message me.

Positive learnings from my incurable cancer diagnosis

Happy Easter!! In honor of the holiday, I thought I’d share a post that I’ve been working on for a few days. The blog title says it all – here are some positives that have come out of this sh*tty diagnosis and have made me a happier person. 🙂

I’ve learned that family is everything.

21462987_10101570616498986_3741919700921090535_nI’ve always been close with my family, but I’ve needed them more in the past 12 months than ever before. After a seizure, your driver’s license is revoked for 6 months. During that time, I was going through radiation, chemotherapy, and support group. My family spent hours driving me to appointments, attending support group with me and keeping me company. Aunts, uncles and cousins dropped off meals, my brothers and their significant others let me vent whenever I wanted, and the whole family came together to participate in events like the MGH Everyday Amazing Race to raise money for MGH’s cancer center. My husband has supported me more than I thought was possible, and I’m finally confident that I made the right choice in marrying him. (Joking, Steven – I’ve always known!).

 

I’ve started taking much better care of myself.

24796505_10101625503180636_6824622626646515638_n

Prior to my seizure last April, I don’t think I had been to the gym in 6+ months. My husband and I had temporarily relocated to Denver for his job, and then when we got back, I moved to a new company. We bought our first home which was a very stressful process, and with everything we had going on, I had stopped exercising and eating well. I definitely put on some weight. In November, when I was finally cleared to exercise again, I decided to set a goal for myself – to run the Disney Princess 1/2 Marathon in February of 2019. It’s a race I’ve always wanted to do, but have never been fit enough to participate in. I’ve been working with a personal trainer (shout out to Semaj!) and am doing great – in fact, I’ve shaved 8 minutes off of my 5k time in just 4 months. I’m feeling healthier than ever, and am excited to continue this journey which also includes eating healthier and getting plenty of sleep.

 

I’ve started living in the moment.

20638615_10101546991638396_3571181410213519701_n

 

Disney trips, hibachi dinners, taking Mickey to the dog park, paint nights, plant nights, Oscar movie marathons, exploring Nashville, summer concerts…I’ve started really living in the moment. I used to spend all of my time and energy chasing things. Trying to close the next business deal, buy a nicer car, move to a bigger house… and because of that, I wasn’t really enjoying life in the moment. While those things are still on my radar, I spend much more time enjoying the people I’m with while I’m doing fun things.

 

I’m finally taking real time for myself.

20376171_10101541479824116_5246281308661959852_n

Getting to the gym 4-5 times a week, finally reading books that have been on my reading list for years, getting into a good skincare routine, spending time painting and crafting…it’s such a nice change. I’ve been spending more time doing meaningful activities and picking up new hobbies (like blogging!) and it’s made me a happier person overall.

 

I’ve learned who my true friends are, and I’ve ended toxic relationships.

This entire year has certainly shown me who my true friends are. They’ve been there the entire time, offering advice, support, and a listening ear. Some people have seemed to disappear from my life, while others have stepped up & told me to stop throwing a self-pity party and come out with the group for the night. I’ve also noticed some people in my life were very negative and toxic, and I’ve stopped surrounding myself with them. Although the number of people I hang out with has grown smaller, the friendships I do have have grown stronger. I also have to mention, I’ve made a lot of new friends in the brain cancer community and I value those new friendships very much.

23244189_10101608086793216_950179669802221422_n

 

Happy Easter everyone, hope the Easter Bunny is good to you!!

Becca

The Gray Gala, #whynotdevin and Ray Bourque’s live auction

What an incredible night at the Seaport Hotel in Boston! The Gray Gala was such a fun event to attend, and a lot of much-needed money was raised for the National Brain Tumor Society. The decor was beautiful, the food was delicious and the live band was amazing. Anyone that left before the end of the night missed out on a fantastic dance party!

IMG_2343

When we first got there, we all took some pictures in front of the official Gray Gala signs, grabbed a cocktail and browsed the silent auction items. There was a lot of variety in the silent auction items, showing how many different people and organizations contributed to the Gala. Unbeknownst to me, my husband bid on some items. We’re still waiting to find out if he won any of the items, but if he did, he is no longer allowed to complain about my online shopping habits!! After browsing the silent auction, we took our seats and were served dinner just before the speeches of the evening began.

The speakers at the event were incredible. Two speeches in particular really stood out to me.

David Arons, the NBTS CEO who spoke about the challenges the NBTS is facing with raising money and awareness. Although there have been improvements, there is still very little fundraising for brain tumor research. Brain cancer is one of the deadliest cancers there is. Below are some facts I pulled from braintumor.org:

  • An estimated 700,000 Americans are living with a brain tumor, and there are over 130 different types of brain tumors.
  • The average survival rate for all malignant brain tumor patients is 34.7%.
  • For the most common form of primary malignant brain tumors, glioblastoma multiforme, the five-year relative survival rate is only 5.5%.
  • Despite the amount of brain tumors, and their devastating prognosis, there have only been four new FDA approved drugs – and one device – developed to treat brain tumors in the past 30 years.

So why isn’t brain cancer getting more attention? Why aren’t we fighting to find a cure like we do for other cancers? Why do we hear about breast cancer, alzheimer’s and autism, but nothing about brain cancer? This is the question that plagues the brain tumor community, as most of us have a devastating prognosis and NEED a cure. You could see and feel the frustration from David Arons as he spoke about this challenge.

The most memorable and emotional speech of the evening came from Christine Suau, Devin Suau’s mother. 

Snip20180325_7

The Suau Family

Have you heard of the hashtag #whynotdevin? His incredibly strong mother, Christine, told Devin’s story at the Gala, and you could feel the raw emotion in her voice. Devin was a 6-year old boy from Framingham, MA who sadly passed away in October of last year from Diffuse Intrinsic Pontine Glioma (DIPG). DIPG affects children almost exclusively, most between the ages of 4-11. With DIPG, there is no effective treatment and no chance of survival. Only 10% of children with DIPG survive for 2 years following their diagnosis, and less than 1% survive for 5 years. When Devin’s parents learned this, they started the hashtag #whynotdevin. Why couldn’t Devin be the first to beat it?

The #whynotdevin hashtag quickly took off and brought tons of awareness to DIPG, and Devin’s parents are still bringing awareness to this awful disease through their foundation in memory of Devin. During the speeches, I was shocked to learn that brain cancer has replaced leukemia as the leading cause of cancer deaths among children and adolescents.

Survival-Chart1

Pediatric Cancer 5-Year Survival Rates, Source: Defeatdipg.org

When I see these pediatric cancer stats, I have to wonder, why is there not more funding for DIPG and brain cancer research? Why does such an aggressive, deadly cancer get no attention compared to other cancers? Brain cancer is the most prevalent cancer in children and has the highest mortality rate. Yet, it is the least well known and is the most under-funded.

The Live Auction! Hockey Legend Ray Bourque

Snip20180325_8

One of my favorite parts of the evening was watching Ray be the live auctioneer for the evening. I’ve had the opportunity to meet Ray a few different times, and he is such a kind, generous guy. Not to mention one of the all-time hockey greats. Growing up in a hockey family, it’s pretty cool to have the opportunity to chat with him!

I spoke with him a bit before the event got started, and asked him what his connection to brain cancer was. He said he was approached at his restaurant Tresca (one of my favorites in the North End) and was asked to get involved with the NBTS. When this happened, he thought of me and other brain cancer patients and said absolutely. The more he’s learned about brain cancer, the more he wants to get involved. Being the guest auctioneer at this event was one way he could help, and help he did!

I think he has either been an auctioneer at other events or was an auctioneer in a past life, because he did a fantastic job. Towards the beginning, people seemed hesitant to bid high amounts, but once Ray started offering “floor checks” (since there was no ice rink nearby) in exchange for higher bids, people started chuckling and bidding higher. Thanks to Ray, tens of thousands of dollars were raised during the live auction. I know Ray will continue to stay involved with the brain tumor community, and I hope to see him at next year’s Gray Gala!

IMG_1788

My friends and family with Ray Bourque at the Gala

Final Thoughts

This event really made me want to get more involved with the NBTS. The more I think about it, the more frustrated I become that there isn’t more focus on finding a cure for brain cancer. It can affect anyone, and is usually impossible to treat. What our community really needs are more celebrities like Ray Bourque to step up and help bring awareness to this deadly disease. Thank you, Ray, for bringing more visibility to such a devastating disease.

On a more positive note, sitting at our table (thanks again Mom & Dad for being a Partner Sponsor of the Gala!) and watching my family and friends donate their hard-earned money towards brain cancer research and the NBTS was incredibly moving. My “tribe” has been so incredible and I appreciate you all so much.

IMG_0293

Thank you for reading!

Becca