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.

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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.

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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.

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Goodnight!

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!

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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.

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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?

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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:

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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.

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!

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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. 

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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.

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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

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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!

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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.

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Thank you for reading!

Becca