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.

I’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.

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.

 

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.

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.

 

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!

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. 

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.

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

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!

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.

Thank you for reading!

Becca

Friday night’s NBTS Gray Gala

I haven’t had an excuse to get dressed up in over a year, but that all changes on Friday night! A few weeks ago, my dad surprised me with sponsoring a table at the National Brain Tumor Society’s annual fundraising event, The Gray Gala which is hosted here in Boston. Our table will be entirely made up of family, and I cannot wait to attend!

To raise money for the NBTS, there will be a live auction hosted by hockey legend Ray Bourque (I’m hoping to snag a pic with him and find out what his connection is to brain cancer) which I won’t be able to participate in because I spent all of my money on a dress to attend the event, but watching a live auction is always a fun time!

There will be several guest speakers, including the parents of Devin Suau (#whynotdevin – I will definitely need to wear waterproof mascara) and NBTS executives who will hopefully be sharing updates on the latest advancements in brain cancer research & awareness.

I’m going to give a full recap after attending the event (with lots of pictures!) but it’s my understanding that several doctors and surgeons in the neuro-oncology field attend, as well as brain cancer patients and survivors. I can’t wait to meet other attendees and hopefully learn more about the NBTS and what they are all about.

Special thanks to my parents for sponsoring a table and contributing to such a great cause!!

Becca xx

I’m back home from Nashville!

Hey y’all! I just got back from a 4 night stay in Nashville with Steven, and I’ve got to say – although Nashville is a cool city, it’s not really my scene. Don’t get me wrong – we had a blast, but I think I would have enjoyed it a bit more if I was still 21 or 22. I thought I’d take a break from the cancer posts and write a recap of our Nashville trip for y’all!

PROS!

The live music. No matter which bar or hotel you pop into, there is always awesome live music. These are some seriously talented musicians and they work entirely on tips. For $20, you can get any band to play a song request. My go-to for the weekend was “Hey Bartender” by Lady Antebellum, which people loved. Steven continuously requested “Neon Moon” by Brooks & Dunn, which was clearly not a favorite as it cleared the bar every time. (It became our strategy for getting bar seats!!)

The people. Everyone we met – Uber drivers, hotel staff, bartenders, shop owners, etc. – were so incredibly nice! And they all seemed so genuine. When we went shopping one morning a young lady working at the store we popped into told me I was “outfit goals”. That was the ultimate compliment (since I spent a ungodly amount of $$ on the boots I was wearing!). It was a nice change from Boston!

The weather. This could be skewed because we left a whopping 18 inches of snow on the ground in Boston, but Nashville had some incredible weather while we were there! Sunny and in the 60s and 70s! We hung out on rooftop patios, wore t-shirts and had margaritas in the sun. Now I REALLY can’t wait for the summer!

The Nashville Hot Chicken. So delicious. However, regular “hot” in Nashville is VERY hot (a dry heat) so after my first “Nashville hot” chicken, I started going with the regular “hot”. Steven, on the other hand, continued to eat “Nashville hot” everywhere he went and would turn bright red and his eyes would water. Yet he still kept eating it!! Crazy old man. (Pictured below is his attempt at eating “Nashville hot” from Party Fowl.) 

CONS.

Everyone smokes. I’m biased, I hate cigarette smoke. I don’t judge people who do smoke, but I don’t like being around it. In Nashville, it seemed like there were no designated smoking areas. Everyone smoked on the rooftop bars, in the streets, on restaurant patios…there didn’t seem to be any regulations around smoking. So for me, this was a big con.

Broadway bars are pretty dirty, and are VERY crowded. I’m someone who likes to sit down at a nice bar and enjoy a glass of wine, without having house vodka-redbulls being spilled down my back by drunk 19 year old girls with fake IDs. I like being able to use a restroom without having to jump over puddles of pee. We’ve all been through that phase, but that phase was 12 years ago for me, and I’m well past it. It was a trip down memory lane to be back in that type of bar…welcome to all the bars on Broadway!

 

My favorite things we did…

Shopped at King Baby

While en route to Party Fowl for some Nashville Hot Chicken, we saw a “unique jeweler” sign in some back alley in the Gulch district of Nashville. Since we were 15 minutes early for our brunch reso, we decided to pop in. Boy, am I glad we did! The place was called “King Baby“, and while I had never heard of the line before, I am now obsessed! It’s almost a rocker meets country vibe, and the jewelry is beautiful! We browsed the store talking to the salesman, and learned that each piece is hand crafted and designed by the jeweler himself. Jeweler to stars such as Florida Georgia Line, Miranda Lambert, T Swift, Bruce Springsteen, Johnny Depp and Steven Tyler, he creates custom pieces. I fell in love with a piece that is now my Nashville souvenir! (Pic of my bracelet above).

Recorded a Song at Ryman Auditorium

Ryman Auditorium is known as the original “Grand Ole Opry”. Just a block off of Broadway, close to the world famous “Tootsie’s” bar, it’s a beautiful piece of architecture filled with country music history. One of the things they offer is the opportunity to record your own song (or professionally record another country artist’s song). Since I’ve been known to enjoy singing (especially after a few beverages), we paid the $30 so that I could record my rendition of “Jesus Take The Wheel” by Carrie Underwood. Turns out that is a VERY difficult song to sing, and all these times I thought I was hitting the high notes while singing along in my car…nope. I wasn’t. But it was a LOT of fun and we took home a CD which we will keep (and make fun of) for years to come!

 Brunched at Fin & Pearl. 

Oh em gee, what a find!! This place was amazing! I saw a recommendation on Thrillist or Buzzfeed and so I booked us a brunch reso, and it did not disappoint! It’s a beautiful restaurant in the Gulch, and we had the perfect weather for an outdoor brunch. It was warm and sunny and the mimosas were flowing! They also had (by far) the best biscuits Steven and I have ever tasted. It was a phenomenal experience and I hope to get back here for dinner one day!

 

Spent hours hunting down unique cowboy boots.

Steven and I had tons of fun going through all of the famous boot shops on and around Broadway looking at different styles and colors. Nashville has everything from novelty boots (ahem, Kermit the Frog!) to high-end boots by Frye and Lucchese. We ended up on settling on some baby boots for our little nephew Wells, and some legitimate Lucchese boots for Steven. We wanted to buy these ah-mazing Kermit boots for my mom, but unfortunately they were not for sale! 

 

We did more fun things, so I might add more later – but for now I’m ready to sleep as I’m finally back home! Thanks for reading and I’d love to hear if you have any opinions on Nashville!

Becca xx

Things that legitimately made me feel better post-cancer diagnosis

After an unsuccessful day of trying to catch a flight to Nashville (since our flight tomorrow is already cancelled due to the nor’easter headed our way), I can stay up late since I no longer have a 6am flight out. It also means I have time for a new blog post!

Packing for Nashville got me thinking about all the fun things I’ve done since I got my brain cancer diagnosis. I know “fun” and “brain cancer” in the same sentence sounds bizarre, but I’ve found myself living more now than I was before the diagnosis.

I’m in a much more positive head space these days, and I thought I’d share some of the things that helped me get here.

 

Celebrating every little victory.

Stitches from surgery finally being removed. Final radiation appointment. First round of chemo completed. Unremarkable MRI scan. Increased platelets. Some victories are smaller than others, but celebrate them all! We usually have a fun date night or a nice bottle of champagne at home after a good MRI. After my stitches were removed, my husband brought home flowers. Even if it’s just a night in and you pick the movie, or if it’s something more extravagant like a spa massage, treating yourself when you have a victory will make you feel a lot better!

Joining a local support group.

At first I was hesitant to join a support group. Now that I’ve been to 6 months of consistent bi-monthly meetings, I can’t believe I waited as long as I did to join my group. And I’m lucky enough that my hospital has a brain tumor specific support group! Hearing other people with similar illnesses, and meeting people who have survived their tumor for 20+ years certainly helps me feel better! There are always a few sad stories too, but overall, joining a support group with people in an extremely similar situation has been enormously helpful. I’ve met some pretty awesome people, too!

Booking a trip. 

If you can’t fly, book a staycation! If you can fly (I was cleared 6 weeks post-surgery), plan a fun vacation somewhere that you love, or somewhere you’ve never been. My 30th birthday fell 4 months after my brain surgery, and so my husband and I went to my favorite place – Walt Disney World! We had a great time and for the first time since surgery, I felt truly happy and completely forgot about the hell that is brain cancer. Our little trip to Nashville that’s been delayed due to weather was booked on a whim. We’ve never been to Nashville together but both love country music, so we figured why not?!

Hitting the gym regularly.

I had to wait several months before I could get back into a gym routine (apparently after brain surgery, there’s a recovery period…who knew?!) but once I did, it made me feel normal again. It also made me feel physically stronger, which is something I desperately needed. Now, I get very agitated if I don’t have time to make it to the gym!

Picking up a new hobby (or getting back into an old one).

I’ve always been a creative person, and writing, painting and reading are all things I’ve always enjoyed. Prior to my diagnosis, I had been so caught up in the 8am-6pm working world that I didn’t have time for myself and I let those hobbies slide. After recovering from surgery, I started keeping a journal again for the first time in years, and also started reading again (I have some great recommendations if anyone is interested in cancer survivor stories). I’ve spent more time painting, and all of these activities are very soothing and are passions of mine. I’m also picking up a new hobby – blogging! It’s important to find hobbies to keep your mind off of the “cancer” (as much as possible, anyway) and to keep busy if you’re unable to return to work. Also, reading keeps your brain sharp!

 

Oh, and by the way – our flight has been rebooked so I think we will get to Nashville after all!

Find your tribe…and keep them close.

I cannot express how important your support system is when going through any type of life changing event. For me, that life changing event was obviously my cancer diagnosis.

This picture was taken a week after my first round of radiation and chemotherapy. Most of the people in this photo are family, some are friends, one is my husband…but the important thing is that they are my “base” support system (minus my parents, not pictured, because well…hibachi & scorpion bowls).

I’m very lucky to have two brothers who I actually like, and I happen to really like their significant others as well. I consider all of them good friends. My cousin (also pictured with her boyfriend) is also a great friend of mine and happened to work in MGH’s proton radiation center when I got my diagnosis (talk about stars aligning!).

After my first week of treatment, all I wanted to do was lie in bed and sulk, but this “tribe” wouldn’t have any of that. They wanted me to come out to dinner, which required that I shower, put on jeans (ugh), and slap on some makeup… and it ended up making me feel normal for the first time since my seizure. This night was one of the best nights for me because it made me realize I could still do fun things, despite cancer treatments & being “sick”.

A big shout out to my “tribe” – not everyone is pictured because I am lucky to have an enormous support system. And if you are reading this because you happen to be part of someone else’s “tribe”, here are some recommendations that I have based on my own experience:

1. Don’t stop inviting us out. Even if it’s always a no, we like to feel included.
2. Tell us about the good things in your life. Just because our life might suck at the moment doesn’t mean we don’t want yours to be awesome.
3. If you’re really close to us and have offered to help us out, don’t be weirded out by some strange “asks”. I had a close friend offer to help me with anything, and I (awkwardly) had to ask if she could scoop my dog’s poop because my husband was out of town for two weeks. I hated asking that, but on chemotherapy, you’re not allowed to be near dog doodies…so what’s a girl to do?!
4. Don’t forget about my husband. He needs support, too. Invite him out for a beer and let him talk about things if he wants to. If he wants to, he’ll bring it up. Otherwise, enjoy your beer.
5. On that same note, if I feel like talking about cancer with you, I will. Don’t feel like you have to bring it up or guess how I’m feeling. It’s enough to simply be there, and I promise that if I want to talk about it, I’ll bring it up.

 

Becca xx

Brain cancer is awkward

Fun little facts I have learned since being diagnosed with brain cancer!

The little squeeze ball they send you into the MRI machine with is NOT a stress ball. I repeat, it is NOT a stress ball. It is an emergency call button. Someone really should have told me that before I was in the machine.

Post-brain surgery painkillers are legit. Apparently I insulted a male nurse’s “professionalism” when I told him I didn’t want him to see my butt when I had to get up to use the restroom while wearing one of those backward gowns.

Brain surgeons take patient identity VERY seriously. After being given pre-surgery drugs, which made me very loopy – I allegedly asked my surgeon how confident he was on a scale of 1-10 that it was my brain he was supposed to be operating on. For some strange reason, my surgery was delayed by about 30 minutes…

When your doctors give you a specific timeline on when to take your meds and when NOT to eat, LISTEN TO THEM. I’d been taking temodar for a while and was feeling totally normal on it. The rule was, take anti-nausea meds an hour before temodar, then wait 2 hours after temodar to eat anything. One time I was a little ambitious and figured I could eat brunch an hour after temodar. NOPE. Had to leave the breakfast table early and hubs had to pull over on the way home so I could barf on the side of the road. Guess my doc wasn’t kidding.

Nurses are basically doctors, but way nicer. This isn’t necessary awkward, but I mean it. The nursing team during the week I was in the ICU kept me calm and kept me sane. Post brain surgery, when all I needed was silence, it was my nurse who asked the very loud Italian woman I was sharing a room with to kindly tell her 30 guests that visiting hours were over. When I was still on morphine post-surgery and begged my nurse to keep my catheter in because it was “SO AMAZING NOT HAVING TO GO TO THE BATHROOM EVERY TWENTY MINUTES TO PEE”, she simply laughed and reminded me of the conversation the next day (gee, thanks). So, be nice to your nurses!

Five things not to say when someone you know is diagnosed with cancer

I’m currently working on a fun blog post, but I wrote this one about a month after my cancer diagnosis (which is why it’s so negative) and thought this blog would be a good outlet for sharing it. Let me preface this by saying, there is no “right” thing to say when someone you care about is diagnosed with cancer. Everyone with cancer knows that. I know that. However, there are some things that you just shouldn’t say, even if you mean well (and everyone always means well).

Personally, I found the best thing for people to say was something along the lines of “Wow, that’s sh*tty news. If you need anything, I’m here.” Any sort of variation of that was always nice to hear and didn’t make me feel uncomfortable or awkward.

On the flip side, here are some things that I heard multiple times that were always uncomfortable and hard to hear:

A positive attitude beats cancer.

No, science and medicine beats cancer. Don’t tell someone who was just diagnosed with terminal brain cancer to “be positive”. We are going through a grieving process. Instead of grieving someone we care about, we are grieving ourselves. It is a strange experience, and coming to terms with a diagnosis like brain cancer is incredibly difficult. When someone who doesn’t understand what brain cancer is tells you to “be positive and you will beat it!” it is incredibly frustrating.

You need to fight this with all you’ve got.

Of course I will give it everything I have, but I can’t simply will this away. Me taking chemotherapy drugs is fighting this. Me going to MGH every single morning for 6 weeks straight at 7am for radiation treatments is fighting this. I’m sorry, but if I start to feel negative because I’m exhausted, sick, and in a bad mental state, telling me to “fight, fight, fight!” is not helpful. Trust me, I’m trying my best. Also, “fighting” implies that there’s a winner and a loser, and I don’t want to be a loser.

Stories of other people you know who beat cancer.

I can’t tell you how many times someone has told me their personal history with cancer after hearing my story. “I have a friend” or “my great aunt” or “my grandfather”…it’s super sad to hear these stories, but they always end with “and he/she beat it! You can too!”. Again, this is specific to brain cancer, but I wish I had something like thyroid cancer that has a high survival rate. Brain cancer is rare and is incurable. Hearing stories of other people beating cancer is definitely uplifting, but doesn’t make me feel particularly good about my situation. The one thing I’ve learned about cancer is every single case is unique. Someone with a grade 3 anaplastic astrocytoma (which is what I have) is battling a different disease if their tumor’s genetic makeup is different. There are SO MANY VARIATIONS of cancer.

Should you be drinking that glass of wine?

I should come with a warning sign… unsolicited medical advice is not appreciated. Trust me, everything I do, eat, drink, etc. has been run by my oncologist. You would be shocked at how often cancer patients communicate with their doctors. I have to notify them before a flight, before a long trip, if there’s any tiny new headache, bump or bruise…if I am doing something, you can be sure my oncologist knows about it. So please let me enjoy my glass of wine.

Well, you look great!

Thanks, but I don’t feel great. Brain cancer doesn’t really impact how I look aside from some hair loss due to radiation. I’ve had so many people say “wow you don’t even look sick!” …Not helpful. I’m tired, agitated, and my anxiety level is through the roof. So when you see me after a while and say “you look great!” when I feel like absolute crap, it’s just not helpful.