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.

Brain Surgery for Cervical Cancer?

Warning this post contains medical photos and talk that may not be for everyone.

Yes… it’s not common, but true, cervical cancer can metastasize like any other cancer. I was originally diagnosed, with stage 1b1 cervical cancer 2 years ago. I had an almost 10-year history of normal paps. Please, get your well-woman exams, vaccinate your children, I beg you, no one should go through this.

My whole brain radiation setup includes a very tight hard plastic/mesh mask to hold my head perfectly still. The radiation itself is quick (~10min), thankfully, the mask isn’t very claustrophobic. l have 3 weeks of daily radiation to keep the small lesions in check.

This all started with a swollen lymph node in my clavicle a few months ago, it came up during my routine oncology follow up, after a biopsy, it turned out to be recurrence; of my cervical cancer. I started chemo and after only one round, the node pretty much disappeared. Good news my oncologist was ecstatic. I decided to seek a second opinion at MD Anderson in Houston they agreed with my treatment plan, which was a relief. They are also going to genetic test my tumor. This is where the plot thickens. While there I developed vertigo and had a hard time moving my head or keeping my eyes open without the world spinning. And my balance was terrible, then I started vomiting with small head movements. Somehow we flew home to Portland, Oregon from Houston thanks to United for helping with wheelchairs and pushing me around airports so my husband could tend to our 2-year-old.

Hospitals are boring, so good friends help make sure your nails still look good!

The next day, first day home, I was worse, my husband went to work and I rolled over in bed and vomited all over myself. I called him, he rushed home cleaned me up, and I rested, he’s a primo man. I got worse as the day went on, called a friend to sit with me, not many people would want to hang out with someone that vomits every time they move. After she arrived we decided 911 was in order, I couldn’t move without emptying my stomach contents. Those poor paramedics. Getting me into the ambulance was a bit like the exorcist, but not pea soup. I just wanted the world to stop spinning.

Benign vertigo was the original diagnosis but a neurological exam revealed weakness on my left side so they decided to do an MRI. The ER doctor with the results was waiting for me before I made it back to my room after the MRI, not a good sign. I had a <3CM tumor on my cerebellum causing inflammation, likely the cause of my issues, they also found multiple smaller lesions in my brain, they had already contacted the on-call neuro team. I was moved to the neurological ICU, I had 2 options, hit steroids hard with hope that controlling the inflammation will lessen the vertigo symptoms or major brain surgery to remove the tumor on my cerebellum, we chose to get it out.

My “brain drain”.

The next 24 hours are a blur, I remember little. The surgery was successful, they got it all, I had an amazing surgical and nursing team. My primary oncologist even sat in on the surgery. I came out with a six inch, 15 stitch incision on the side of my head and an EVD (external ventricular drain) Google it if you’d like to learn more, but I just called it my “brain drain”. It had to be aligned at all times to my ear to drain cerebral spinal fluid and prevent too much pressure on my brain so its maintenance/care was a constant box to check by my nurses. I spent a week in neurological ICU, regaining strength, practicing walking and getting my balance back. Fortunately, the surgery brought sweet relief of my symptoms, but with brain surgery comes new issues, I have left sided ataxia/weakness. Walking was challenging initially, I needed assistance to do everything including going to the bathroom. I am walking independently now, I can do most daily self-care tasks, including showering, but recovery is tough. My fine motor skills still need work. This took about twice as long to type as pre-surgery.

My son, Wayne playing doctor. The wonderful hospital provided us with toys for my son to play with while he visited.

So my next step, I’ve already started whole brain radiation to control my brain lesions, they are too small for focused radiation. I’ll restart chemo, Carboplatin/Taxol/Avastin when radiation ends, October 18, the day after my 34th birthday. I’ll likely remain on Avastin, indefinitely. I’ll also start neuro-physical therapy and occupational therapy soon. But I’m on the road to recovery!

Learn more about my story here: http://cervivor.org/stories/lizzi/