Brain Surgery and Radiation/Full Update from Lizzi

Recovery was a bit harder than I expected, especially coupled with chemo. I’m so thankful we had family here at all times to help with me and our little guy.  I did develop what’s called radiation somnolence. It felt like narcolepsy, I’d fall asleep doing anything. I’d taken to paint by numbers to keep me busy and my loved ones were constantly finding me asleep with paint brushes in my hand, it was pretty funny. And, apparently, I was just out of it. I’d fall asleep in any position. From surgery, I still have some trouble typing and need a cane to keep me on the straight and narrow, but continue to improve. I have trouble finding words sometimes still.

Now onto the full update. I was rehospitalized after my second chemo for a fever of 104! So, I missed trick-or-treating (major

My sister and I at chemo enjoying lunch.

bummer) but I was so out of it I kept forgetting. I did have a chest CT which showed minor pneumonia so I was bombarded with antibiotics. Unfortunately, the CT went low enough to incidentally show my liver. They found teeny tiny metastasis there. Everything (good news I guess) is tiny; scans like PET’s hadn’t caught them (PETs resolution is about a pencil eraser, these are too small) so now we know they are there to treat too. I’ve finished 3 cycles of Carboplatin/Taxol (I hadn’t had the Avastin due to potential effects to the irradiated blood vessels in my head), I’ve also had 2 blood transfusions in the process due to low red blood cells.

I saw my oncologist before my last chemo and he decided to change my regimen. My CA-125 (cancer marker) crept up between treatments and he wasn’t comfortable holding out on the Carbo/Taxol/Avastin routine so we are switching to a Cisplatin/Gemzar/Avastin cocktail. I’ll probably feel better (Woohoo) and grow my hair back. I had my first dose of Cisplatin/Avastin. I’d had the Cisplatin 2 years ago when I was originally treated, will start Gemzar next week (it wasn’t in yet) and slept like a baby last night, sleeping is hard during normal hours for me during cancer treatment! Naps, however, are easy! If you are in treatment and having trouble with it, with pain, anything DON’T be afraid to tell you Dr. I wasted weeks keeping things to myself which only hurt me. So be your own advocate, please!

HAPPY HOLIDAYS from our family to yours. We are working on Wayne’s “Cheese” smile! But I did have enough energy to go with my dad and hubby to cut a Christmas tree!

We are getting back in touch with MD Anderson to see if they have more tricks up their sleeve. In the interim, I’m still not my full self but know I will be soon. This felt like the first blow but my oncologist just says it’s like a shovel and sand, the previous treatment was working and we were getting the sand out (my two palpable lymph nodes are gone) we’re just looking for a bigger shovel and we’ll find it. I like him a lot and I know we’ll find it.

Read Lizzi’s original post here.

6 thoughts on “Brain Surgery and Radiation/Full Update from Lizzi

  1. Lizzi you have had such a rough time my heart has been with yo u wish I could do more. You battled like a true warrior for that I am in awe. Stay strong and so glad for these updates. Lots of love from the DeFrain”s

  2. You never cease to amaze me, Lizzi! Your courage and zest for life are beyond what I can imagine. I pray for your recovery every day. One day I will pray to God to thank Him for your recovery. God bless you and your family.

  3. Bless you for sharing your story. Your bravery and transparency are a wonder. May I put you on my prayer list?
    Continued positive thoughts flying your way.
    Bernice Merryman
    (longtime friend of Nancy and Katie Amberger)

  4. You are truly an amazing woman. Your hope, love and strength are so impressive and such an inspiration. From here lots of love and prayers follow you on this journey.
    Mary Ellen

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