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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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!

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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.

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

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

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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!

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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!!