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Newly Diagnosed GBM Survivors

I have survived 23 months and it has not been a smooth sailing ride, however, I’m alive. I’m grateful for my life. I laugh daily. I have hope. I travel. I live a very full life. Most importantly I love and I am loved.

Hi! I’m Kristie. I’ll be your tour guide, today.

Here are a few tips I would like to offer:

Come to terms with your diagnosis as quickly as possible however you can. The faster you do that, you can begin to focus on what you need to do and what you want to do. I accepted my diagnosis very quickly and just wanted to know what my next steps were. I didn’t cry for myself, I cried for my family and friends, but I didn’t waste time dwelling on it.

Don’t get on the internet and just start looking up GBM and tell your family and friends not to do the same. A lot of data and statistics are more than a decade old. Don’t pay attention to the statistics. Everyone is different and you are not a statistic.

It’s okay to be scared for yourself and your loved ones. It’s natural, but do NOT let fear take away from your life. Do not let fear lead you. You can visit https://www.cancercommons.org/ and put in your diagnosis information and they will inform you of which clinical trials you may qualify for should you want to go that route or for a later route.

Have the hard and emotional talks right away. Tell who you want and that can be difficult depending on the person. Anyone who loves you will be saddened by the news, but tell them how you are feeling about it. I told people I was at peace with whatever happened. I had to be because I wasn’t in control and that was a big realization for me.  It was also very freeing. Let your family and friends know what you want and need. Make plans for if you cannot make decisions for yourself. Having a Living Will, Power of Attorney, and a Will is so important.  I also informed people that I had strong will and would do whatever it takes to be here.

Be okay with letting negativity go rather that be people or situations. Sometimes we cannot avoid internal or environmental stresses, but if you can avoid as much as possible, then it will lighten your load, so that you can focus on healing.  You can continue to love people, but from afar.

Get used to going to labs sometimes more frequently than others.  Get used to MRI’s. Treat your medical team kindly, they see a lot of grim things throughout their days and know that they aren’t trying to hurt you when they can’t find a vein.

If you don’t feel like you’re being cared for the way you want, find another doctor. I have been fortunate to be at Vanderbilt where I have an incredible and supportive team. I have told my Oncologist that no matter how things go, I do not ever want him to give me a prognosis. I just think that’s bullshit.

If you read something about GBM especially on some group pages that begins to give you anxiety then stop.  You don’t need to know every grim detail. Some of the things may not even happen to you. You can’t worry about what’s coming next.

Stop watching and listening to the news all of the time. Guess what, there has been violence in the world since the beginning and it’s not going anywhere and unless it is something you truly need to know about or can help with, then focus on other things. It isn’t good for humans to know every tragic event that is going on all over the world. Again, I cannot emphasize how getting away from negative energy can greatly improve your life and I wish everyone could just watch puppies playing on YouTube all day.

Surround yourself with fun, positive, and energetic people especially those that may accompany you to appointments.  Also, be with people that you can say, “I’m too tired to talk” or “I don’t feel like visiting today” and they are fine with that. Sometimes you may want to just put your headphones on and listen to music or a podcast.

Post-Op:

Rest, but also get up, live your life. That’s what the discharge nurse told me and I do.

Let people take care of you. You just had brain surgery. Get over you damn pride.

Be grateful even if you feel rough. You’re alive!!!!

The meds can make you constipated. Drink plenty of water and if you start to feel the slightest bit backed up, take a laxative.  Trust me on this. You cannot strain after your resection and trying to take a crap when you have to go, but cannot go, it’s a terrible experience. Eat plenty of fiber. FOLLOW THESE INSTRUCTIONS! If you don’t at some point you will be thinking to yourself, why didn’t I follow Kristie’s instructions. Plus, who wants to have an aneurysm while you’re on the toilet just trying to relieve yourself. Uh, no one, that’s who! Don’t let that be you. Okay?

Get comfortable however you can to sleep.  You can have your doctor prescribe a bed if needed and many insurance companies will pay a portion of it. (A tip my aunt gave me when she and my cousin came from Texas to help me and my family. I’m grateful for all they did).

Alright, here is the low down on radiation:

The worst part is getting fit for the mask then being in the mask which they lock down on the table. I always kept my eyes closed and it’s only for a few minutes.  I would always imagine that I was lying on the grass with sun on my face and tell myself that whatever was left of the tumor was going away. Then whoever took me to the appointment would take me to run errands, go to lunch, go for a walk or home to rest. I have an amazing support system.

The Radiologist will tell you that you will be bald in a few spots and the hair will grow back. According to most people I follow and myself this is not the case. The sooner you realize this then you can go buy hats or prepare to wear a comb over or just sport a cool new coiff and start a new trend.

If you are weaning off or off of the Dexamethasone and you are feeling really foggy, start feeling  pressure or for me I heard the blood swooshing sound in my head, talk to your doctor. It’s from brain swelling. You may need an increase in dosage or to go back on.

Chemo:

It affects everyone differently. Temador did not work for me, so I went on Avastin. Don’t freak out if one or more treatments do not go accordingly, there are other options. Do NOT lose hope.

Back to that vein thing I referenced earlier, drink lots of water. The more hydrated you stay the better. Chemo can wreak havoc on even the juiciest of veins and also the cold doesn’t help. Start pumping that fist before they call you back to the lab and again, water, water, water.

Lifestyle:

I relax more than I ever have. I used to be a go, go, go person all of the time and now I relax in the right way. I read inspiring books, inspiring blogs, funny books. I meditate and practice yoga almost daily.

I dance, lift weights, hike, ride the spin bike, do aerobics and rest.

I eat a healthy diet that consists of vegetables and fruits including juices, lots of garlic including raw, turmeric, salmon, nuts, seeds, almond butter. I do treat myself though.  Ya’ll know that I have to have a doughnut from time to time or a blueberry muffin.  I got to try the original cronut in New York, last month. That was AMAZING and worth the wait in line in the cold.

I take supplements under the advisement of Patrice Surley at http://www.patricesurley.com/     I love her!

I find the good in almost any situation, it can take me a while, but it gets me through life.

I try new things.

I do things I enjoy doing.

I hang out with people I enjoy being around.

 

There is much more I would like to share, but I’ll stop here. I share this sentiment often. I survived brain surgery, so I’m in overtime.  All of the best games go into overtime. I didn’t come up with that, oh how I wish I did.  I read it about an elderly couple, but I just love the sentiment and the truth behind it.

Let me leave you with this; try to be patient with yourself and your caretakers. You all have the common goal of wanting you to heal.

 

 

 

 

 

 

 

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