Monday 23rd January 2017,
The Liz Army

To have a slow-growing brain tumor

Three and a half years after my diagnosis my health care system finally hired a neuro-oncologist for the Sacramento area. You’d think the California state Capitol would have a fancy oncologist a bit sooner than that, but apparently neuro-oncology isn’t a popular field (what with brain cancers representing only 1% of all cancers).

Kaiser would have hired someone sooner, but it look three and a half years to get a worthy candidate. I still plan to keep in touch with my medical team in south San Francisco, but I was highly encouraged to establish a relationship with this new doctor in case anything should ever get bad with me and I’d rather see a doctor close to home in the future.

Meeting the new doctor was fun–I got to have an intelligent conversation with a professional who knew my history and could chime in with a new perspective. For the most part, he agreed with everything my current team has done, but he reminded me of options I was presented with back in the day that I forgot about.

For example: my team at Kaiser suggested I take 24 months of Temodar, while the oncologist at UCSF suggested only 12 months. This was my decision to make, and after much thought I went with 24 months. The doctor at UCSF said to do 12 months because I could stop and then if the tumor ever came back I could take more Temodar. Since I did the full 24 months the chances that I could take Temodar (or any other chemo) again are low.

I thought, “Why did I make that decision?” And I remembered I did this because I was healthy and I was tolerating Temodar quite well–better than many others. I didn’t want to stop a drug that wasn’t causing major discomfort, and was saving my life.

He then asked Brett and I, “So have you thought about what you would do?” And we were like, “What would we do about WHAT?” And he said, “When the tumor grows back, what will you do?”

That shut us up for a minute. Of course, deep inside, on rare sad days, I worry about what would happen if I died and left Brett all alone… But I have to admit, I haven’t done much thinking about the steps leading up to that crazy situation. Ninety percent of the time I still think I am invincible, like a teenager who just got a drivers license.

Then we talked about various scenarios and situations. Inside I ‘D’oh-ed’ myself for taking a new job and not taking he easy route, career-wise. Maybe I should have stuck it out with one employer for the rest of my life. Ugh.

Believe it or not, the last three and a half years I’ve lived in ignorance of how this whole life expectancy thing will work out. But as this new doctor reminded me, “Grade twos will turn into grade threes and fours. Eventually.”

Brett had to leave the appointment early, and after he left I asked the doctor in a “level with me” voice, “But really, aren’t there cases when grade twos just stay a grade two forever?” I implied that with my youth, health and intelligence, someone as awesome as I must be spared from this injustice.

“Rarely,” he said. And by rarely he, he meant, “Only if you die of something else.” (My interpretation.)

But then he quickly followed that up with, “I have a 60 year old patient who just got diagnosed with a grade two Astrocytoma. And you know he didn’t just develop this tumor overnight. He could have had this since he was 12, and it just now he is feeling the affects.”

And I knew he was right. That perspective gave me hope. My tumor is slow growing. I never had any symptoms before I had a seizure. And the only reason I have seizures is because of where the tumor lives. I could have had this tumor since I was 16 and would have never known about it if I didn’t have warning signs like seizures.

We talked about my options if it were to come back. Surgery is an option depending on how the tumor grows, and for some sick reason, I’d rather have surgery than radiation.

And for some really sick reason, I’d like to have an awake craniotomy next time around just for the sake of having the experience. How many people can say they’ve done that?

Is it weird that I’m afraid to go on a roller coaster, but not to have an awake brain surgery?

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  • Pseudo Uncle Bob

    Have not yet met the new guy but your meeting with him has me concerned over your forgetting the rule: Yesterday is over and tomorrow is not yet here so worry about today only and do everything today you can to assure your happiness, including going with a new job if that is what makes you happy and challenges your amazing skills. Love U

  • Edward Slas

    That is not weird, you might go on a roller coaster if you had some say to how fast it went.
    Did your new doctor have any other options other than surgery if tumo comes back? I would have expected the surgery  suggestion from a neurosurgeon. Radiation is not that bad in the long run.

    • In my defense, I will ride all the roller coasters at Disneyland, but not at California Adventure.

  • ForHope

    LiZ, if I may call u that? U are one awesome historian and there is hope in every word u write. First thanks for the constipation solution my bro is tolerating chemo. He has been dx w/ grade IV glio a year ago and on temodar 5/28 cycle now. Same questions we ask how long to take Temodar? Should he make 2 years anniversary… What is theside effect in continuing it? I guess in definitely? We feel like if we stop the tumor will grow back.

    Much luck in your journey. I am a silent follower.

    With Hope

    • I can’t give medical advice because I DO NOT have an medical background. All I know is my own experience and what I have observed from others.

      That being said, it seems higher grade glioma patients do not normally go on Temodar for so long because they are subjected to many other intense treatments at the same time (e.g., radiation, Avastin).

      You can always ask about more treatment, but doctors weigh quality of life and whether or not the treatment is worth bearing.

  • Hi Liz,
    Thanks for the update. I am now in the same post-Temodar boat. Finished my 24 months of Temodar this past fall fighting my 2-3 Astrocytoma. Just got a good MRI report: no growth. Haven’t really thought about the “What if?s” either. Just trying to live really well. Spent the New Year in Namibia with my wife. 
    Jim G-M

  • Eli2u

    I had an awake craniotomy at Mayo in MN.  It was certainly an experience but not one I’m in a hurry to repeat.  The surgery itself wasn’t so bad, it was the getting into my head and the closing up that were uncomfortable.  During the surgery – I was kept awake  to answer questions while they treated my brain like an archeological dig and kept or removed sections depending on my reactions.
    I’ve ridden on exactly one roller coaster and I didn’t much enjoy it. 
    I’ve thought about the what if’s (mostly when I’m in a dark mood) and only did one year of Temodar to save that as a possibility and one more option.  My memory is craptastic but I think the original plan was that I’d do two years but my Dr here thought to stop after one.    I tolerated it pretty well too. 
    Love your blog – you put into words so many things I hadn’t been able to explain well.

  • Eric Arons

    I’ve had two of the awake craniotomies, but with very different approaches! For the first one at Cedar-Sinai, they put me out, woke me up for surgery, then put me out again. I don’t remember anything from the surgery and at the time was a little disappointed. The second one, at UCSF, I was awake the whole time! And it was NOT so fun….

    Next time? Put me out! ;-)

    • Not that I plan on having a THIRD brain surgery, but if I had to… based on everyone’s suggestions here… I would definitely ask them to wake me up after the drilling.

  • Scott

    Liz, I remember my first visit with my then new NO. I had been seeing my NS, and a specialist who was dealing with why I was having seizures. He was nice, well respected, plenty of experience, but to me he came off a bit negative. After a couple of more visits, I attributed that to him seeing bad outcomes most of the time. The last MRI I had, he compared it to one I had two years ago, and there was no change. I actually got a positive response from him, like he was excited for me. He was by no means outright negative, I just got the feeling that he rarely saw anything good happen. We all know what the statistics say, but we hold onto the hope that maybe we can be the one who has a positive outcome.

    As far as your job goes, I just think you have to go on living your life as you would normally. You can’t control the future, so live your life the best way you can. You may be afraid of rollercoasters, but being a cancer warrior, you’re riding one everyday. My best to you and Brett.

  • Patrickdemacedo

    Liz, I had an awake surgery and I have to say I could have it again anytime if needed, I was really focused on being a good patient, I ran the thing in my head 10 times before the surgery. I had a high risk of impairment and when the doctor stimulated, on the last potential ressection, a piece of the tumor, my whole left side got paralyzed. I thought “Thank God I am awake” and we stopped the surgery. In any case I hope you don’t need surgery. Why can’t we take Temodar for more than 2 years? If it is well tolerated are there any restrictions? I would think that as long that we can stop our tumors from growing we would be in good shape. Good luck and focus on the present! Yesterday is the Past, tomorrow is the future and today is a gift, that’s why it is called the Present; Cheers!

    • That’s exactly why I would do an awake craniotomy. My tumor is close to the sensory and motor strips and I already have minor damage from the second surgery.

      • Patrick Macedo

        I don’t understand why these surgeries are still done not awaken. I met a girl that had a biopsy prior to having the awake craniotomy and she said the biopsy post surgery was far more traumatic. As for neuro onchologists my doctor shared the same observation you made, they are under extinction. The same happens with pediatric onchologists, lower incidence gets less attention, but I am still hopeful that the more time we buy the closer we get to a cure vs. managing the tumor. I have a crazy hypothesis that dependind on your answer may have some validity: were you into any endurance sport prior to your tumor?

  • Davidg

    Hi Liz, I’m new to your blog but I really like your attitude.  I was diagnosed with a grade 3 astrocytoma almost exactly 3 years ago (aged 36 at the time).  I had surgery, 6 weeks of radiation and 6 months of temodar.  Thankfully I’m healthy as an ox (or a trout or something else very healthy) and even ran the NYC marathon back in November.  I’m like you in that 90% of the time I’m totally positive but I also have moments of darkness and think what if… I guess that’s inevitable.  I really enjoy your blog, keep up the  good work and keep fighting.

    P.S. Oh, I’m also a bit like you in that I’ve recently not just changed jobs but started my own business! Crazy but fuck it, why not!?

    • We are totally crazy! But we are being healthy.


  • David S.

    I love all the discussion here, Liz, you’ve got quite the following amongst the gliomanati (glioma + illuminati = a society of enlightened peoples whose common bond is a brain tumor)

    • That sounds like a great blog title!

    • Patrick Macedo

      David, I love your definition! This is definitely going into my blog too. And Liz os totally a gliomanati who tought me how to live w/ glioma.

  • I just discovered your blog! I have a left temporal grade 2 oligoastrocytoma. I had seizures in 2006 and an awake craniotomy in 2007, and another craniotomy in 2011 plus radiation. Our kind of bt survivors are hard to find.

  • d kennedy

    My first craniotomy was awake. I was very happy to be fully sedated for the second one. I guess it was an experience, but its one that I wouldn’t want to repeat. There is so much mixed information on slow growing bt…I’m thinking its because of the 1% factor.