Nessa's Journey with Intermediate-Grade Astrocytoma

Survivor: Brain and Spinal Cord Tumors in Adults > Glioma > Astrocytoma > Intermediate-Grade Astrocytoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 9 years ago, Female, Age: 31

  1. 1
    • Nessa
    • Experience with Intermediate-Grade Astro...
    over 5 years ago
    Nessa's Avatar

    Diagnosed

    Oh No

    I had just returned from Ireland after "studying" there my junior year of college when I suffered from a grand mal seizure. When I came two my knowledge from growing up in a medical household and knowing some first aid myself, I was able to conclude this was so as I had bit my tongue, could hardly move, and had no recollection of the event. I somehow made it up 2 flights of stairs, got in bed, and called my parents to explain the situation. They rushed home and took me to our local hospital (where my father works). I received a CT scan that showed a surprised group of analysts a tumor growing in a 21 year old's brain. They rushed me to a bigger hospital to get an MRI of it and to be hospitalized for a few days to monitor and find a surgeon to take the thing out. I do not remember much of this. I know one doctor told me that losing my hair was the least of my problems - he was quickly kicked out of the room by my sister. XXX. After I had my craneotomy, I waited several weeks to hear the biopsy. My father was the one who told me it was a stage three tumor. I asked him if it was going to kill me, and he answered, "We are going to do everything we can." The moment was surreal; I didn't feel a need to cry, but a need for a delicious, full-flavored Dr. Pepper. My dad and I were on our way to the local gas station in minutes, and I started radiation and chemotherapy treatments the next week.

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  2. 2
    • Nessa
    • Experience with Intermediate-Grade Astro...
    over 5 years ago
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    Surgery

    Procedure or Surgery

    A craineotomy isn't really something you expect to come out of without any side effects. My Anaplastic Astrocytoma happened to shack up in my right temporal lobe, the most seizure prone area of the brain. My recovery was very slow, what with waiting to regain sensation in the left side of my body (I couldn't even wiggle my toes for 12 hours post op [Thankfully, I was told that could happen BEFORE surgery, so it didn't scare me when they woke me up]), to gaining enough strength to walk the length of the hall. I was given high doses of anti-seizure drugs as I had 3 during the surgery. I do not remember suffering from any seizures in the month or so after my surgery but DO struggle from them now, four years after my surgery.

    Went as Expected: Strongly Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • Nessa
    • Experience with Intermediate-Grade Astro...
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Temodar is a slender, poisonous pill. My dog actually ate some of them one evening. I did not suffer any terrible side effects, other that fatigue. I have heard otherwise from others. The fatigue I had from the pills came with all the treatment, and my daily life was just about sleeping and eating cheese plates my mom so sweetly prepared for me.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • Nessa
    • Experience with Intermediate-Grade Astro...
    over 5 years ago
    Nessa's Avatar

    External radiation

    Radiation

    While receiving radiation from the Novalis machine itself was not painless (I called it ONE of my boyfriends as I spent more alone time with it than any potential boy I could have been dating), but the side effects were pretty terrible. It gave me my signature right temporal bald spot (it is pretty cool as it shows off my scar - which always wins at "who's scar is the most badass?" contests). I will admit that it took me a year or two to accept it, though I fully embrace it now. And it WAS the radiation that made that hair fall out, not the chemo. I remember the day it started to fall out. I sat outside just pulling the strands from where they had so happily clung and dropped them into the wind with the hope that a bird would gather it for her nest - that maybe some creature could gather some warmth from it - I had already donated much of my long mane to locks of love at that point - mostly to lessen the load of nearly a foot of hair falling from one spot. Once most of the hair had fallen out, I went to the salon, got a mani/pedi, and shaved my head. Along with the hair, I was incredibly tired, thirsty, and wanted NOTHING to do with food. After six weeks of 5 days with Novalis and 2 days off, I was delighted to be finished with the radiation treatment.

    Painless Experience: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Not Specified
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  5. 5
    • Nessa
    • Experience with Intermediate-Grade Astro...
    over 5 years ago
    Nessa's Avatar

    Seizures

    Side Effects

    Seizures. Oh seizures. My brain has an affinity to shoot off like a firework. Or maybe it did (hopefully did). There were times that I was having grand mal seizures weekly. I was placed on nearly every anti-seizure medication there was (most of which did not work and/or had unbearable side effects). They effected my quality of life (and can say that they still do as I am still highly medicated to the point of where I must nap for 2 hours each day even with 12 hours of sleep). I obviously cannot keep a full time job. I am hoping that as time passes and my brain continues to heal and settle that the dosage can be lowered, and I will be able to at least show off my work ethic (I am beginning to think people think I'm a lazy woman with a Dean's list English degree from IU and return student for Massage Therapy...still making all A's....). Bah.

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  6. 6
    • Nessa
    • Experience with Intermediate-Grade Astro...
    over 5 years ago
    Nessa's Avatar

    Diagnosed

    Oh No

    I had a grand mal seizure in my parent's basement. After a CT scan, I was sent to a hospital in Indianapolis for an MRI that detected the little walnut sized bugger shacking up in my brain (the story is a bit more dramatic than that...but I gotta leave something for my book readers!).

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  7. 7
    • Nessa
    • Experience with Intermediate-Grade Astro...
    over 5 years ago
    Nessa's Avatar

    Diagnosed

    Oh No

    I had a grand mal seizure in my parent's basement. After a CT scan, I was sent to a hospital in Indianapolis for an MRI that detected the little walnut sized bugger shacking up in my brain (the story is a bit more dramatic than that...but I gotta leave something for my book readers!).

    0 Comments