Sunday 19th February 2017,
The Liz Army

My brain: 16 months after Temodar

Us brain cancer peeps get check-ups in neuro-surgery, not in oncology.

What’s the status from my latest brain MRI? No growth!

Also, my new neuro-oncologist is proud I’ve started exercising.

He mumbled something about exercise helping build a stronger immune system and remarked, “You’ve lost six pounds since you were last here.”

What-what?! Say that again? Really?

And oh yeah, a stronger immune system is also good.

In other news, I found out my neurosurgeon retired. That kinda bummed me out.

Now that he is no longer practicing I will mention his name and give him a shout out.

Dr. Aloysius Llaguno:

Thank you for answering all my silly questions and tagging my head with a sharpie marker in pre-op. Thank for you for the nine hours you spent in my head during surgery #1, and the four hours you were in my head during surgery #2. Thank you for being a badass. Thank you for saving my life.

Hallmark is seriously missing out on the “thank you for saving my life” card genre.

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  • It’s interesting that you say in the image caption that you get checkups in neurosurgery. Is this a general thing in the US, or only where you live? In Germany, I get my trimonthly checkups at the neurooncology department, where my doc is a specialized neurooncologist who doesn’t do brain surgery (but works closely with those guys, too).

    Keep up the exercising, I think it’s definitely worth it. Started myself again with a 30min program 4-5 days a week, and let me tell you, I’m looking forward to the next weeks when I don’t get that hell of  a muscle ache anymore ;).

    • I have a neuro-oncologist–his office is inside the neuro-surgery office at the hospital. The general oncologists are in a separate area of the hospital called Oncology. I’ve never even been in the general oncology area. 

      I am pretty sure the location of the neuro-oncologist’s office has to do with the convenience of proximity to neurosurgeons. They must chat a bit about patients and compare notes. 

      General oncology is a different beast. 

  • Sounds like that was a good visit!

  • Bcwgolf

    Hi Liz,

    Enjoyed your comment to Erin’s blog. I just replied to it because I was not successful in emailing you.

    So glad to hear that your most recent MRI shows no tumor growth. I was wondering if you were still seeing the “new” neuro-oncologist at Morse Ave. Erin saw him twice, but no longer sees him. She sees the oncologist every 3 weeks.
    Do you go to Redwood City any more?

  • Melanie

    funny, I always tell my neurosurgeon he saved my life. he just kind of waves it off like, well. it’s what I do!

  • Autumn

    We love our neurosurgeon as well especially after the 2 surgeries my husband had around the same length as you! He is also the guy who got to tell us Ben had brain cancer so yeah we hold him up high, we know he’s truly given us time!

    Question when you went on Temodar…what did you think would happen after the time they said you’d be on it? Ben started it in July ’12 after 2nd surgery/ and it’s more agressive now etc. And the plan is a year. We have a hard time thinking beyond next week. So I’m like what happens after a year?! I guess I need to get more research done on Temodar! I hope you are doing well. You are a gorgeous soul thanks for sharing!
    I wish Ben would get online and see how many people are dealing with what he deals with everyday! I think it could help him!

    • What do I think would happen after Temodar?
      I always saw (and still see) Temodar as a medication that would freeze my tumor in time,i.e., prevent growth. I never thought Temodar would erase my tumor completely.
      Now, more than one year after completing 2 years of Temodar, my tumor is pretty much as I thought it would be. It is frozen in time with no growth beyond how it was when I finished treatment. Now I just hope it doesn’t grow again.

  • Ron r

    Liz: how’d you decide how long to take the temodar? Did you have a choice? Or did the docs say you took it as long as possible? Thanks. Ron r ( Response here or off line would be great. Thanks for all of your sharing!