Sunday 22nd January 2017,
The Liz Army

Four months at a time: living between brain scans

My worry levels over the past few years.

I live my life four months at a time. After a good scan I am happy to move forward with my life for a while.

In some cases I do long-range planning: I am going to a wedding this summer. My BFF wants to go to Seattle with me in the fall. Brett and I want to go to Japan in a year.

But that’s as far as I get.

I don’t let myself hope for a dog anymore. Kids are out of the picture. There’s just two of us, so our housing situation is OK.

Where do I want to be in five years? Hell if I know. I just want to be alive.

Last night I had a (rare) freak out. You know what I am talking about: something pops in your head and suddenly you fear for your life.

This doesn’t happen to me that often, and when it does, it is bad.

I feel bad blogging about fear and freak outs because it makes me sound like I get down on myself. This isn’t true. I just happen to own a space on the Internet where I am allowed to tell the world that living with a slow-growing brain cancer can be scary sometimes.

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  • I think we are kidding ourselves if we cannot admit we are sometimes afraid.

  • Lsquared

    I know exactly what you mean. Mine is every three months. I often think about quitting my job to spend whatever time I have left with my two children. My doctor says to live my life normally. I don’t know what normal is anymore.

  • Liz: We are living between three month scans here and yes, it is terrifying and gut wrenching and then it is normal (as normal as our normal can be) and we forge ahead. I feel you and you are not alone. I hear you on the “I just want to be alive, too.” I just put all three kiddos to bed and not a night goes by that I don’t wonder what that future holds. What I do know is that all these days are going to be filled with as much life as possible and that is all that I can control. Hugs girl. Keep on keeping on! Cheers- Jen

  • Charles Barr

    I love this blog…and your candid, straight from heart unabridged thoughts. I try to represent that in my own blog about cancer. Right now, my wife is just starting radiation and chemo…just recovered from surgery. Worry seems to take center stage in our minds, though we don’t even speak about that. Fun seems not achievable or affordable. I have found the most comfort for survivors and fellow cancer bloggers….just to relate to someone else who understands means more than most anything….so, Liz, know you rock and inspire whether you intend to or not…and I thank you for that. Brain Cancer is just F’n scary.

  • Avo388

    Can I ask why you don’t hope for a pet? I get the kid thing…but a pet can be a great distraction and motivator.

    • We have a cat, but we are not ready for something as high-maintenance as a dog.

  • Monika

    I’m scared to plan for the future too. My fiance often talks about “when we have kids” or “when we get old” and I dont say anything, but I get scared that it will never happen. I hope that I’ll be the miracle that gets a full life but I know the odds are against me. We banked embryos before I started chemo so we plan to have kids once I’m done with temodar. I just always wonder how long I’ll live to see them grow up. Scary. Trying to live life one day at a time.

  • Right now I’m just starting to feel “okay” about planning for a hike 2 whole weeks in advance! It’s getting better, but I’m glad that you have some long-range travel plans. Planning for travel or just something fun brings hope along with it which can lift one’s spirit for sure.

  • Pseudo uncle Bob

    I like the chart. Goal setting would have the cancer slice really, really tiny but it is much more of your life, PERHAPS, because it has become a focus of so many of your activities which are directed towards helping others who suffer from the same malady. So maybe, for the benefit of all those you have impacted positively, the cancer slice should never get too small. There are too many people out there whom you help. So it is ok to remember that part of that slice is the good that you have and no doubt will continue to do.

  • Guest

    I love the last part – about owing space on the internet and being able to state that living with a slow-growing brain tumor/cancer is can be scary. A lot of the times. Thank you for the reminder that it’s OK for me to be scared some days.

  • I love the last part – about owning space on the internet and being able
    to state that living with a slow-growing brain tumor/cancer is can be
    scary. A lot of the times. Thank you for the reminder that it’s OK for
    me to be scared some days.

  • I can definitely relate to graphic you posted, worrying about money, regaining my independence, plus the nervousness between between MRI’s. I’ve had one a month since I started Temodar. I take a good nap during the scans at this point.

    It’s nice to have an online space to discuss this kind of stuff because it reassures me that even though I try to stay positive, it’s OK to express sadness or worries. Thanks for providing that space.

  • James Rechard

    A brain tumor is an abnormal mass of tissue that takes up room in the skull and interferes with normal brain activity.Thanks,
    Fittodo Team
    Healthy Living