Tuesday 21st October 2014,
The Liz Army

What I wish I knew before my brain was diagnosed with cancer

Liz January 18, 2014 Surviving 10 Comments
Liz checking out an art installation at the Crocker Art Museum in Sacramento

I wrote this as a guest blog post for my friend Amanda. This will be part of her #52blog series, where each week a new blogger completes this phrase: What I wish I knew before my ______ was diagnosed with cancer.

It can happen to anyone

I was diagnosed with a low-grade, but malignant, brain cancer just one week after my 29th birthday.

The diagnosis was like, “Happy birthday! Thirty is just around the corner, and in case you didn’t feel like an adult yet, you now have cancer!”

I used to think cancer was a disease for kids. Or older people. Or for smokers. Or overweight folks who made poor food choices. Or better yet: old, overweight smokers who ate fast food and drank 2-liters of soda on a daily basis.

So when I was diagnosed I was afraid it was my fault.

I was a healthy 29-year old. I exercised and consumed a diet rich in fruits and “good fats.” I didn’t drink alcohol and never did drugs. I was a nice person.

What did I do wrong? I asked myself.

The most frustrating part of cancer is that it doesn’t discriminate. Cancer doesn’t care for whom you voted, or to which god you choose to pray. Some of the most controversial matters humankind wastes our time fighting about are rendered meaningless in the face of a disease like cancer.

What I wish I knew before I was diagnosed is: it can happen to anyone.

When I came to that realization I was able to get rid of the weird guilty feelings that I was somehow at fault. And with guilt out of the way I was able to focus on being awesome (i.e., dealing with adversity) and putting myself in a mental space to get better.

So in the first few weeks or months (or even years!) after diagnosis you find yourself wondering why? or what you did wrong, please know it is not your fault.

It is up to you to choose how you want to handle your cancer. My advice is to be awesome.

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  • Greg

    I was awesome for a year and a half. Then I took a nose dive. I have gotten to the point of what’s the point. I am a Christian and have been gung-ho on my Savior having a plan for me but almost two years later I don’t know what that is. My friends have distanced me because I haven’t died yet and I feel alone. My wife can’t help me and I have resorted to alcohol to keep me from becoming a mental wreck that can’t make through the day. I don’t know why it took me this long to come to this point, other than I planned dying before now or what but I never thought I would be at this place in my life. I feel bady my wife and children have to go through this crap. I have become worthless and I don’t feel like I have but I have a few friends any more. I wish I knew why this has happened to me. I know you have your own problems to face but I need an outlet to let this known even though you don’t know me.

    • http://thelizarmy.com/ Liz

      Greg,

      Please know my advice to be “awesome” comes from the perspective of a survivor (me) who is 5 years post-diagnosis. OF COURSE it is “easy for me to say” at this point in my survivorship.

      But the point of this blog post is: What I wish I knew BEFORE I was diagnosed with brain cancer. I certainly didn’t know the “awesome route” existed pre-diagnosis, throughout the two years of treatment, and the first year and a half post treatment,

      In fact, the year or so immediately after treatment was THE MOST AWKWARD time for me. (A time not too far in the past if you are doing the math.)

      You say you are nearly two years-out post-diagnosis–and I bet that means you are done with treatment. That means your “what the fuck now?” state of mind coincides with my similar WTF period. (Please let me know if I am correct in this analysis.)

      We are all different animals, but to ME your frustration sound familiar… and it is totally normal. It is OK to feel this way. In fact, I have communicated with many brain tumor survivors (malignant or otherwise) who carry this around with them.

      I’m sure my message of “you are not alone in feeling this way” might not mean much, but I hope you are hearing me. When I felt the way you are feeling right now, one of my brain cancer friends told me what I am telling you now and it helped me when I needed it most.

      In the meantime, keep expressing yourself. Whether it be through blog comments, Facebook, Twitter, a brain tumor support group, or writing your own blog, keep talking. Keep connecting with people like yourself.

      Survivorship is hard, awkward, and unique to everyone. You ARE doing this right!

      Your friend,
      Liz

    • Deborah Stern

      Greg, I can totally relate. Therapy has helped me a great deal as I am waiting to die (on a bad day) or being a survivor (on a less bad day). My therapist can’t answer any questions (“why?” Or “where has god gone?”) but it’s a safe place to vent and cry and let off some steam and just be completely bitter and angry without feeling like I’m burdening my husband & kid. Good luck to you Greg.

      Deborah

    • Autumn

      Hi Greg, Coming from being a wife to someone who fought for 3 years…he just passed 2 months ago. Your relationships sounds a lot like what we went through. No simple advice or words can fix this very complicated situation or disease and all that comes with it. All I know from what I’ve learned if you have it in you spend whatever good time you can with those who love you. No one asks for this. Every single person feels like they are going through it with you, although you obviously are the one who deals with it all. I never knew really how my husband felt. I can reflect now and see. And I wished I could of stopped being so sad and scared of losing him and just lived more with him. He went downhill so fast I barely kept up. I’m trying really hard to not make this depressing…sorry. :/ But every precious second something beautiful can happen. I am sure it’s not ever easy to face the day and what comes with it. We have a daughter too 11 years old now. You still have a lot to give I can promise you. And they need it as much as you do. Talk to them…((HUGS))

  • ISK

    Sometimes I can feel angry with the talk about “fighting”, “winning”, “loosing” etc when it comes to cancer. It is not only and purely your choice Greg, to be awsome or not. Cancer is not your fault, and neither are all your surroundings, the whole of your starting point. Try your very best not to feel guilty for not being awsome all the time. I am not, and not everyone else who has cancer (allthough it may seem so when reading blogs about them/us) It’s not easy not to feel guilty, I know. But try your best to think about the good feeling in your stomack you have gotten by doing something good for someone around you. I think it is a deeply human trait. What if your family feels that way too, from you “being a burden on their shoulders”? For seeing your face light up when helping you out with something small. Do your best, Greg. That is good enough. And changes continuously as does life itself. This weird entity never perfect (for anyone, anywhere) that is always interesting though sometimes truly feels like shit. All we have is eachother, as close friends if we’re breathtakingly lucky, beings all placed in the same weird setting that is the world, life, death.
    I truly hope you are having a day abit less awful than yesterday and manage to not give up despite not being totally awesome! You don’t seem worthless to me. (And not to Liz either, I suspect)

    • http://thelizarmy.com/ Liz

      Agreed.

  • Ann Smith

    I don’t have anything super insightful to add other than to to say that the best person I’ve ever known in my life- my partner, Katie- has a brain tumor. She’s the best person I know. When she had mice in her office at work and everyone else was setting glue traps, she built a humane trap and inside, she put nesting fluff and water and food and a toilet paper roll for the mouse to sleep in and toys. All so he wouldn’t be scared and could be safe until she found him and released him in the country. I have a gazillion stories like that about her. One enormous tiny kindness after the other. One tiny enormous kindness after the other.

    The only thing that pisses me off more about cancer than cancer is the way it hurts someone’s heart so much. It’s already set up camp in someone’s brain or lungs or blood or whatever. Leave the heart alone, asshole. I don’t know you but I can tell you with absolute confidence that you’re worthwhile. So worthwhile.

    I’m thinking of you, Greg. Xo

  • Erin T

    Greg- I went through the same thing, did my treatment, felt like I kicked ass and then I was back to real life. People thought I was ok so they never asked. I felt like I was incredibly vulnerable and expected bad news at every doctor appointment. I also spent a lot of time agonizing over what would happen to my children when i die. My husband was angry at me for not appreciating my survivorhood and pointed out how many others were way worse. (Which made me feel like a jerk in addition to being afraid.) In hindsight I was clearly depressed and having trouble coping with the uncertainty of my future health. Therapy helped me a lot. Also, I was a swimmer all the way through college so getting back in the pool helped me feel young and strong and alive (I was diagnosed at 31.) Also time helped. I just hit 8 years and I’m doing great (tumor wise). Emotionally, I’m much better. But I still have moments but they are few and far between.

    Hang in there Greg, I think this time is so isolating because people who haven’t been through it can’t possibly understand. But there are lots of us who know. I hope every day is a little better. I will be keeping you in my thoughts.

  • Peg

    As soon as I woke up from surgery and my neurosurgeon came by to check me out, he told me: “This is not your fault. It doesn’t matter how much bacon you’ve eaten, what your family history is, or how much you use your cell phone. This isn’t genetic and we have no idea why it happens.” It was singularly the best thing he could have said, because I woke up terrified that I’d doomed my twin sons to brain cancer. Freeing me of that fear allowed me to start to concentrate on myself.

  • Dale Presley

    My name is Dale Presley. I have read your blogs and pray for each of you and your families! My late wife Laura Presley had Brain Cancer for 11 years. We have two boys 16 and 12 yrs old. As a result of what I, my wife and kids went through I felt The Lord tell me to write a book about it so that others going through similar circumstances would get encouraged! The name of my book is Almost Close Still Counts With God. If you would like to know more about it you can go to my website DalePresley.com never give up and pray often!