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/

Hair Today, Gone Tomorrow: Cancer & Self Image

I have learned so much from cancer. They say, “Through darkness comes light.” I really believe that’s true.

In remission for the third time, having to lose my hair due to chemotherapy was hard on me as a woman. I know most will say, “It’s just hair.” Even I say it too, just to convince myself to stay strong. But, in fact, it sucks. It truly opened my eyes to everything I once wasn’t happy with.

Having cervical cancer reminded me of how I was so hard on myself and picked myself apart. I know I’m not the only woman who’s ever felt that way. I look back and think, “Wow Jill, you were so beautiful. Why didn’t you see it? Why did you pick yourself apart and not embrace your hips that measured 44 inches, or embrace your Roman nose?” After all, it’s my personal features that give me my character. Don’t get me wrong, I had confidence, but I still found things that I thought weren’t “perfect.” Nothing is perfect!

Every now and then I like to look back on pictures of myself before cancer. Why did I complain? I was fine the way I was. Now I’m fighting something more meaningful. I’m fighting for my life. I’ve learned to embrace life’s changes, how my body has changed and how I’m Mrs. T (bald) once again. Or how going #2 is completely different from before. Because I have a colostomy bag, this is now totally different.

So my advice to other women, especially women with cancer is to love WHO YOU ARE. Be happy with how you were created; focus on what you HAVE and NOT what you DON’T. Believe me, there’s something greater out there for you, if you believe. I’m a people watcher, sounds creepy I know. I often wonder to myself whether or not the person I’m admiring knows how eccentric he or she is. Being in the city regularly due to my medical appointments, I get to see all colors of the rainbow. The culture differences, the true beauty behind just how different we may look. But internally we’re all the same.

No matter what type of cancer you have ladies, just remember, you’re beautiful inside and out. Your inner beauty will always be there. We might need time adjusting to our shiny new heads or new gadgets attached to our bodies. But, with all the hardships that come along with our new appearances and emotions due to cancer, just remember how bad ass we truly are.

I hope to inspire other women dealing with Cervical Cancer to share their stories and true emotions without fear. Tell it how it Is; don’t hold back. Our cancer is tough, but somehow being painted as “easy.” If I can reach you with my story, just imagine who you’ll inspire by sharing yours. Let’s come together, share our stories, and help one another through our battles. We can help prevent future cases of Cervical Cancer, the one cancer that can often be prevented with a vaccine.

From now on, I’m going to love every inch of me because I’m beautiful inside and out. I will also remind my friend’s how beautiful they are as well. You have one life. Live it, love it, embrace the changes, take care of yourself, and be kind to yourself and others.

Now that I’ve gained my confidence back, I’m going to rock my bald head, wear my wigs and not care who’s looking. Because they could really be thinking, “Wow, she’s so fierce.” Those stares may not have anything to do with my cancer.

So gentlemen, don’t be afraid of our appearances, we’re strong women who know how valuable life is, how anything can change but we still ride the waves. How special love truly is. If you see a friend or a loved one going through the changes of cancer, please remind them how beautiful they are.

Jillian Scalfani is a young 34-year-old mother with an incurable form of cervical cancer. She and her children have a great support system when it comes to her friend’s and family. Read more about Jillian here.