Written by Head for the Cure Ambassador Emalee Barto
So, you’ve just discovered the ‘BIG C’. I know you’ve probably got a million thoughts swirling around in your head right now, so please get cozy and let’s talk about crafting a treatment plan.
Lesson Number 1: I am not living with cancer. Cancer is living with me.
The moment I received my brain tumor diagnosis, my life automatically shifted out of autopilot to survival mode. Survival mode serves many purposes, but operating in a permanent state is not one of them. One of the most profound moments during my journey was when I realized that cancer was living with me. This was my body, my brain, my future – taking ownership over my treatment plan was empowering.
I certainly was not equipped to navigate a brain tumor diagnosis. Heck, I thought my seizure was a heart attack! But like anything else, I started to identify those who were brain experts. It is the same as any other facet of your life. If you find yourself in jail, call your lawyer. If you’ve got a leaky pipe, call your plumber. You get the point – find the experts! Even if it means finding just one medical professional that you know and trust. Ask them for recommendations or referrals.
People are always looking for ways to help during a crisis and this is the perfect way to put them to work. Depending on your specific diagnosis, you may work with a Primary Care Physician, a neuro-oncologist, radiation oncologist, neurologist, endocrinologist, neuro psychologist, and a nurse navigator. This is the core group of medical professionals that worked on my treatment plan. I also found it incredibly helpful to identify a friend or family member that can work closely with my health insurance company and my employer. I quickly learned that it never hurts to ask one trusted individual to help provide status updates to your community of supporters during the initial diagnosis period. This allows you time to focus on healing and keeps the social media crazies at bay! Trust me, this time will be a blur and you are in the eye of the hurricane. Investing in your medical team upfront will make for a strong foundation – trust me, just when you think it can’t get any crazier, it will.
Lesson Number 2: Get a 2nd Opinion. Always!
Welcome to the great buffet of brain tumor treatment options! Would you like a side of radiation with that? How about a little chemotherapy? When it comes to a brain tumor diagnosis there is a typical standard of care that is followed among all professionals. Quick plug, this standard of care hasn’t been updated in a devastatingly long time, seriously look it up!
The standard of care typically includes assessing whether or not the tumor is operable, attacking the tumor with radiation, and finally smothering the tumor with some chemotherapy. Easy enough, right? While there may be standard of care every brain tumor diagnosis is different. It is important to discover the best approach for you. Knowledge is power. I was able to make an informed decision on my treatment plan because I gathered as many facts as I could along the way. This can be time consuming and overwhelming, but again the investment here will pay off in the end. Invest in yourself and GO get that second opinion. Heck, if you’re an overachiever, go get three or four opinions. You will never regret having too much information.
Lesson Number 3: One size does NOT fit all.
Lucky you! A brain tumor diagnosis is not like your favorite pair of leggings; one size does not fit all! Simply because your aunt’s cousin’s friend of a friend’s long lost brother has lived the last 45 years with a brain tumor does not mean that their method of treatment is what is best for you. It is ok to say ‘no’, it is ok to say ‘yes’, and it is ok to say ‘one moment, let me think on that’. Treatment plans differ based on a multitude of factors; such as diagnosis, location of the tumor, age, etc. Don’t be afraid to take a step back and truly weigh the risk verses the reward. And please do me a favor – review the medical risk disclosure forms before you sign them! If you have questions, speak up and ask. Never, ever forget that this is your body, your journey, and your choice. Every person deserves to be treated with dignity and respect. Remember – you are not living with cancer. Cancer is living with you. Own it – I like to think of it as a ‘Choose your own adventure’ situation. There is no right or wrong answer.
Lesson Number 4: Cancer is not a common cold; so don’t treat it like one!
Remember when I mentioned how important it is to get cozy with your medical team? Surprise! You’ll be regularly checking in with these folks for weeks, months, and even years from now. Got off on the wrong foot? No worries, I believe donuts can fix anything. I’ve even heard bringing the staff donuts can get you favorable scan results! Just kidding! Though it may help you stay on the nurse’s good side the next time you have a blood draw. After the initial shock of a brain tumor decimates and long after you’ve rang that post radiation/chemotherapy bell, there will be lasting side effects of the medical trauma you’ve been through. Yes, I said trauma – your life may resemble a Lifetime movie right now! Remember, one size does not fit all. If your healing journey looks different than another’s, that is ok. After this experience some individuals may have physical challenges that require follow-up physical, speech, or occupational therapy. They may even need help reintegrating into the workplace and seek legal counsel to help navigate tricky disability laws. Others may experience psychological challenges that require anti-depression medication, infertility counseling, or even coping mechanisms to mourn the loss of relationships. A disruption to our nervous system is serious – this is not the time to treat your health like a common cold. The residual effects of a brain tumor can linger for a long time and unfortunately, may even return in time. Yikes – that got really serious there for a moment! Let’s get back to the donuts…
Lesson Number 5: You are not alone.
Seriously, we are never going away! Welcome to the terrible, awful, horrible ‘Big C’ club! I’m sorry we had to meet this way, but I can promise you that you will never be alone, and I will never run out of brain tumor jokes. Please know that your Head for the Cure family is always ready and willing to help you. Together we can defeat brain cancer!