A few thoughts on unsolicited medical advice

I’ve met some incredible people throughout my life, particularly within the cancer community. One thing I’m fairly certain most cancer patients have in common is that we strongly dislike unsolicited medical advice.

Before you continue reading, please know that this post isn’t meant to offend. When someone offers me advice, I know they mean well and are only trying to help. The good intentions are always appreciated!  However, like most cancer patients, I work closely with my oncologist to follow a treatment plan developed specifically for my tumor and it can be frustrating when someone expects me to try an unrealistic “cure”. Here’s a sampling of some of the unsolicited medical advice I’ve received over the past couple of years, that hasn’t exactly been helpful:

“Did you know Smartwater cures cancer?”  I call BS.  I love Smartwater – it’s my preferred brand. However, I drank it before my diagnosis, I’m drinking it now – and a high-grade glioma is still comfortably hanging out in my right frontal lobe. If Smartwater cured cancer, I’d have bought stock in it long ago.

 

“Are you sure you need radiation? It’s SO bad for you.” Trust me, I know that shooting radiation beams directly at my brain probably isn’t good for it. But neither is a high-grade glioma that causes memory loss, speech impairment, migraines, nausea, fatigue…the list goes on and on. I’ve already discussed the pros and cons with specialists, and inserting your opinions once I’ve already made an informed decision doesn’t add any value.

 

“Do you eat kelp? I heard it prevents cancer”.  Unfortunately no, I never made a point to eat seaweed. Although some people enjoy it and it does have some health benefits, there is no correlation between kelp eaters and being cancer-free. I’ll stick to foods I enjoy, thanks!

 

“Did you get a second opinion? I have a friend who lives on the same floor of a really good specialist…” I spent weeks getting second, third and fourth opinions. I went to Dana-Farber, Tufts, and Brigham & Women’s for consults before meeting my oncologist at MGH. It’s a stressful time post-diagnosis for cancer patients and their families as they try to navigate different treatment options. If someone has already chosen a doctor and a course of action, it’s (usually) best to avoid this topic.

“You should try this clinical trial I found.” Bottom line, if there is a clinical trial that I qualify for and should enroll in, I’ve already heard about it from my oncologist. There are many reasons why cancer patients aren’t enrolled in clinical trials, and the reasons vary. They may not qualify for reasons unknown to you, or they simply may not want to feel like a guinea pig. This is a really sensitive and personal topic to many, so it’s best to just avoid going there at all.

Have you ever received strange and/or unsolicited medical advice? Feel free to share in the comments below!

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.

 

 

 

 

 

 

 

A BIG thank you to my community!

WE ARE OVER HALFWAY TO MY FUNDRAISING GOAL!!!! THANK YOU!

I am amazed by how many people have contributed to this goal of mine. It’s truly humbling. As many of you know, I am extremely dedicated to this cause – raising money for brain cancer research and proton radiation therapy at MGH. MGH is a national leader in clinical research and the development of experimental therapeutics for brain tumors. I have had such an amazing experience there (well, minus the whole brain tumor thing…) that I want to help raise funds to further their progress.

What is most touching about this goal of mine is how many people from all walks of life have contributed to my campaign. Friends, family, my local community … it’s absolutely incredible!

One example of this is Grimsby’s in Stoneham (right on the Melrose line!). They’re our local pub and we are there probably 2-3 times a week. This past weekend, they had a parking lot yard sale where people could sell belongings. I asked if I could come with the bracelets I make and sell for cancer research, and they said yes! So, 8am on Sunday morning, my mom, Steven (pictured behind the booth!) and I set up a table:

After the sale (where we raised over $200 for MGH!) my family and I went into the restaurant for lunch, and a couple of the bartenders and waitresses immediately came over and said they wanted to purchase rope bracelets! I still had a lot left, so one of the girls who we see all the time asked if she could put my sign up behind the bar to help sell them. I OBVIOUSLY said THANK YOU and YES!

When we walked into Grimsby’s last night for dinner, she immediately came running over and said they had sold all of the bracelets! So, she didn’t just put the sign out – she was telling people about them and actively selling them! What an amazing thing to do. That, to me, is above and beyond!! THANK YOU, Grimsby’s!!

The other piece of this that has been incredible to see is how many people from over the years have found my blog, found out about my cause and have contributed. Donations and bracelet purchases have been coming in from all over the place! People from the neighborhood I grew up in and haven’t lived in for over 10 years. Old college friends. My real estate agent. Friends from Berwick Academy. Girls I used to play ice hockey with. New friends here in Melrose. Old friends who are still here in Melrose. My younger cousin. Grimsby’s manager. Former Adaptive partners. Friends from the brain cancer community. My in-laws from San Diego.

I am so lucky to have such a broad network (I like the word community better), and that everyone is willing to donate to such a great cause!

Thank you, everyone – we’re halfway to the goal and I still have eight months until the race!!!

Forever grateful,

Becca

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!

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

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 to 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!

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?

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.

I 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.

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.

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!

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.

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.

I 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!

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!

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:

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?

When 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.

Hello from London!

Remember when I said that I’m now living life to the fullest? Well, when my husband told me a few weeks ago that he had an international work trip coming up, I said – why don’t we fly out early and spend a long weekend in London before you head to Europe? He said OK, booked my flight with miles, and here I am!

The funny part? He’s not here yet!!

He was supposed to fly out on my flight but because of a work issue at home, he’s on a later flight and will join me tomorrow. Am I annoyed that I’m here by myself in London for 28 hours? Not at all! In fact, I am excited!

I used to be scared to travel alone. I’m an awful flyer with a history of panic attacks, and I’m admittedly terrible at figuring out public transportation. However, I have a new outlook and am looking at this as an adventure! I’ve got maps on hand, exchanged dollars for pounds at the airport before I left Boston, and wrote down a list of all the shopping markets I want to hit before the husband joins me and slows down my spending. 😉

Steven is laughing at my “preparedness”, but the last time I arrived in London on my own, I spent 2 hours circling Heathrow airport on the terminal train…the entire time I thought I was on my way to Paddington Station in the city. (Told you I’m bad with public transit).

I’m also thinking back on that last time I was here in London….it was about 2 weeks before my grand mal seizure/brain surgery/cancer diagnosis. It was the last vacation I had pre-diagnosis, and it’s funny because I’m carrying so much more baggage this time around. (Figuratively and literally – I’ve got about 5 pill bottles with me).

I’m excited to explore this city by myself for a bit (in safe areas, of course). My plans before my husband arrives are to:

• Shop at the local markets (only buying things I can’t find at home!)
• Hit up the Burberry Factory Store
• See the Changing of the Guards at Buckingham Palace
• Find an amazing cup of tea
• Steal the hotel closet space before he has the chance

It’s funny how much this diagnosis has changed me. I don’t think I EVER would have been so excited to explore a new city alone (I’ve only been here once before, for a few days) before this cancer diagnosis. I could barely fly alone. Now, I have this new mentality that nothing can be harder than what I’ve already gone through, so I can tackle new things on my own!

(Admittedly, London is a very safe, English-speaking city, but still!! New outlook on life!)

Cheers,

Becca