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!

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Rest in Peace, Senator.

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

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

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

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

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

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

Right now, I’m feeling sad and angry.

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

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

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

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

Rest in Peace, Maverick.

 

 

 

 

 

 

 

Can I ever consider myself a cancer survivor?

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

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

Thanks, Google. So uplifting!

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

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

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

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

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

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

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

What are your thoughts on the topic?

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.

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

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!

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.