Monday 22nd September 2014,
The Liz Army

Beyond my diagnosis: Where do I go from here?

Liz January 2, 2014 Surviving 25 Comments
Carrying heavy things.

A cancer friend of mine recently posted on her popular blog that she was going to put her “story aside” after four years. She was now transitioning back to normal life after four years of writing about breast cancer.

I understand what she is talking about. It has been nearly five years since my second brain surgery, and three years since I finished chemo. Besides advocacy work in the brain tumor community, and maintenance scans (now six months apart), brain cancer is no longer a focus in my day-to-day life. Sure, I take anti-seizure meds, and I think about the disease, but I am focusing more on my career, my husband and work-life balance, and less about cancer.

I am starting to let dreams back into my life that I never considered the first few years after diagnosis. Is it time to start drumming again and join a band? Is it time to get serious about Olympic weightlifting and participate in a competition? Should I pursue new career options in other cities?

When I want to blog I think about things that need fixing in my community and politics, and less about brain cancer.

What should I do?

I look at people on the scene: the newly diagnosed, the warriors in treatment who are just finding their voices in the brain tumor world. I wonder if it is their time to share their stories, and time for survivors like me to take a step back.

Any opinions out there?

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  • jolie

    We are waiting for my husbands first mri. Dx is GBM. We have stopping talking about it since it has consumed our lives. But i am still moving forward as the National Brain Tumor society can use our story for the federal oral chemotherapy parity act. It is hard to have normal when we are waiting….but i think Liz, have fun live your life and thank you!

    • http://thelizarmy.com/ Liz

      Jolie: Yes, they CAN use your story. What a great way to respond/give back.

      How do you “not talk about it?”

  • kelly

    I’ve been dealing with Lyme disease for the past several years and started a Lyme disease support group this past year. I wonder the same thing….at some point I hope not to deal with the Lyme on a daily basis. Then what? In my case because there’s much to be done in the medical community in regards to diagnosing and treating Lyme disease, I think I’ll continue with hosting the group and doing awareness and education. Once Lyme disease gets the “treatment” it deserves, maybe I can bow out.

    Have followed your courageous story since my stepbrother was diagnosed with an oligodendroglioma in the fall of 2010…one surgery and some chemo later and he remains a poster man/child for the disease stage/grade 3 (can’t remember which it is referred to!)!
    So glad to see you continuing to do well! Love how you’ve dealt with everything with a sense of humor!
    Rock on!
    Kelly

  • MishMashMamma

    As the saying goes, life is too short to have sorrow, you may be here today, but gone tomorrow, so grab life by the you know what and enjoy the ride! Your blog will always be online for others to learn/take comfort from. Happy New Year!

    • http://thelizarmy.com/ Liz

      Thanks for reminding me that the blog will always be online.

      Perhaps I can redesign the blog layout, have a brain cancer section, and continue to write on other topics.

      • MishMashMamma

        Exactly. You never know when what you write may inspire others who are also fighters and survivors!

        • http://thelizarmy.com/ Liz

          Think this is direction I am going in!

  • Kate Dee

    My husband and I were having this same conversation just the other day. This month is five years out from diagnosis and over one year from the end of chemo. It’s a very strange transition to go from all consuming and living day to day to really thinking about a future. We decided to really embrace life and give cancer a super big kick in the ass so we got pregnant. Coming soon in May 2014. Feels so good to look forward to a life to be instead of the what if’s of cancer. Could he have a recurrence down the road? Possibly. But he could also be hit by a car tomorrow. One thing this has taught us is to live for today.

    • http://thelizarmy.com/ Liz

      Congratulations! May 2014 is going to be awesome.

      Brett and I are not having kids, which is partially due to brain cancer, partially due to being selfish, and partially due to a genetic disorder that may rear its head. However, it would be nice to have something like that to look forward to. For now we plan lots of trips.

  • Ann

    Just a thought- I think the new people on the scene benefit from your voice. But it makes sense if you want to try out your voice in new places. :)

    • http://thelizarmy.com/ Liz

      True, true.

      As for the “new people on the scene,” I don’t even know if THEY know they are about to embark on a life changing journey that could end on a positive note.

      Perhaps that will irk people who have lost others. And here I am healthy seeing it from that perspective.

  • jimgm20

    Liz-This is an interesting topic.I seem to have done the opposite. I wanted to get back to normal life and normal thoughts as soon as I could after surgery. I did that. Everything has been stable since dx and surgery 4 1/2 years ago. Knock wood. I tried to show people that I had not changed. That everything is fine. I guess people around me think I am fine and they don’t need to ask or worry. I ask myself if that was the wrong thing to do. Should I have talked about it more? Should I have promoted my fight? Did I not say much because of my midwestern modesty upbringing? “Shucks. It’s nothing I can’t handle.” Have I done the brain tumor community a disservice because of this?

    • Ron r

      Jim: very interesting comment. I’ve taken the same silent sort of approach. Partly for your stated reasons but partly because I fear being vocal could negatively impact my career long-term – assuming I have a long term ahead of me. I could be wrong, but I sense some careers are better suited to being vocal, while others are not so conducive.

      • http://thelizarmy.com/ Liz

        All good points.
        I have been insanely vocal, to the point where, yes, anyone potentially wanting to hire me in the future can easily find that I was diagnosed with a brain tumor.
        Hopefully they can look beyond that and see what I have been courageous by being “out” and doing something positive with the experience.

  • Stu

    Liz,
    I was recently diagnosed with an astrocytoma. As you know survival among patients with these tumors can be quite variable. The first thing I did when I was first diagnosed with a primary low grade CNS neoplasm on MRI was find other people with this tumor on the internet. Unfortunately there are very few active blogs, forums, etc…which showcase long term survivorship.

    Whats even more disappointing is that most of the internet based prognostic information about these tumors is quite dismal and incorrect. The data is based on patients from the 1980′s and 90′s. Clearly the approach to the treatment of these tumors is different now.

    The fact that you are a brain tumor patient living your life and continuing to blog gives me hope that I will also have a long life ahead. You are an example to the world that living with a brain tumor is definitely a possibility.

    My vote would be for you to continue stepping forward!

    • http://thelizarmy.com/ Liz

      Thank you, Stu! My reason for continuing this blog for so long is for the very reason you cite: “very few active blogs.” Yikes and yikes.

      I don’t like not knowing why they blogs or forums discontinued. Was it because the person moved on with their life, or because something went astray?

      OK. I am in this for the long haul.

  • Ron r

    I get the point of your piece. But please don’t take a step back. Ur presence, knowledge, experience, and info fills a huge void.

    • http://thelizarmy.com/ Liz

      10-4. Thanks, Ron.

  • John (hav77)

    If you can move on and want to, then might as well :) Some of us aren’t so fortunate either because we can’t physically, or because we’ve put ourselves in a mental cell. I say you should start living again and more importantly, start dreaming and dare to make goals once more. We’d all rejoice in seeing you breaking free from the doldrums of living with brain cancer.

    • http://thelizarmy.com/ Liz

      Good points, John. Having this blog is very cathartic and has allowed me a forum to express my thoughts and move on. I couldn’t be “moving on” without it.

      That being said, I can’t move on from the blog, otherwise, I couldn’t move on with my life, dare to dream, etc.

  • Jan

    Isn’t the Internet a strange thing? I have googled my brains – yes brains – out over the past 7 years reading about brain tumors. Prognosis, treatments, patient stories. My husband had surgery 7 years ago (January 26, 2007 – I’ll never forget that date) for an oligodendroglioma II in his left temporal lobe. No additional treatment except the 4 month mri. I am his Brett. All was good up until January 2, 2014. His scan showed something “different”. Happy New Year. He has an appointment with his neurosurgeon this Tuesday. Anyway – today I googled “What does a second brain surgery feel like” and bam, your blog was the 2nd hit. I spent the last hour at work reading a lot of your posts. They made me smile, nod my head and very often laugh out loud but mostly you really lifted my spirits. I needed it today. Thank you.

    • http://thelizarmy.com/ Liz

      Jan: I am sorry to hear about the recurrence of your husband’s tumor.
      Thank you, thank you, thank you, for telling me you got something out of all the rambling. And that you laughed at descriptions of this stuff, because I hope we can all have a laugh.

  • Katy

    Wow. I can’t tell you how your words are inspiring me and giving me some direction. You have a great style, voice and presence–thank you and please keep writing–perhaps several sections on this blog! I’m at work now and just found your site and am excited to go through it more thoroughly. My husband had his first seizure November 19th and had surgery on November 21–we’re still getting the “grade” level of the tumor down. “2.5″ I tell myself….;) We are in the midst of the treatment options, clinical trials, learning the language—a new warrior being born. We are both from the midwest and my husband is the quiet type to not announce what’s going on—but I clearly see how your work has cleared the path that have come after–and how important that legacy is. I haven’t looked thoroughly through your site yet, but do you know anything about patient/medical advocates for brain tumors? We are looking for help in wading through all of the information….any suggestions would be such a gift. Thank you and keep rocking on, writing, and taking road trips! If you haven’t done a “hot springs” tour of N. Cali–do it! It’s delightful and healing:)

    • http://thelizarmy.com/ Liz

      Katy,

      Thank you for commenting, and reminding me why it is important to keep writing: to let the newly diagnosed know we can keep living.

      As for medical advocates, I don’t know anyone personally, and I understand there are legal ramifications for non-doctors offering advice, but I would check out the American Brain Tumor Association for resources through diagnosis through treatment.

      Visit their website at: http://www.abta.org

      Also, a coalition of brain tumor advocates released an amazing resource just a few months ago. Get the book or download a copy at: http://www.braintumor.org/brain-tumor-information/

      :)