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/

To Heather With Love

Dear Heather,

I wish you could see what I see. My best friend, the friend who ‘knows more than more’, who knows me as I know her. My friend who has always been then for me, and vice versa. Both a little stubborn, though I’ve eased up a little over my cancer diagnosis.

Ever since we met, I admired everything about you. The way you dressed, I always loved your Express wardrobe, pinstripe dress pants with a sleek collared top. There’s something about you that I’m sure you never saw. Do any of us truly realize what’s so special about ourselves?

Heather and Jillian

We knew of each other in high school, but became friends when school was through. I remember you telling me you thought I was a bitch because of the scowl on my face from time to time. But, little did you know all the hurt and pain behind it all, and I’m glad you looked past that, and we became friends, the best of friends.

We’ve been through so much together and still have remained at each other’s side. I’ve been lucky to have the same friends for over 20 years; I’m grateful to have you and all our friends. We get along great, and we’re always there to support, encourage, be honest and help one another out.

Heather, Jillian’s Best Friend

You’re beautiful, strong, determined, smart, genuine, caring, honest, lovable, and funny and you come from a terrific family. I admire everything about them too. I wish I had a family like yours; maybe they’re the reason you’re such a good person. They’ve molded you into a stand-up woman, and I know they’re proud because I sure am!

I’ve been dealing with cervical cancer for over three years, and it sucks. You’ve been there since day one, along with your family. Either just checking in, dropping off food, bringing diapers and wipes for Joseph, and anything that was needed you were there to assist. My cancer has been hard on us all; not just me, but my kids, family, friends and especially you. You offered your life if it were possible so I could be with my boys. We’ve cried and hugged so many times saying how unfair this is. But unfortunately, this is my life and my cancer isn’t going anywhere.

Now it’s June 2017 and I’ve tried it all. But none of the treatments are working. I want to live the rest of my life and be happy. My biggest fear was always leaving my boys behind. It hurts like hell. There are days where I wish God would just take me now. The pain of knowing you’re leaving this world without knowing if your kids will be okay is a death sentence itself.

I had my oldest son when I was 20 years old and shortly after I had him, his father and I went our separate ways. I kept Jayden away, for my own reasons to protect him, and I’m sure his father knows that. I know he knows I only want what’s best for Jayden. We still don’t have a relationship, but he knows his son is in good hands. Which brings me back to my best friend, Heather. My family is small, and some aren’t able to care for Jayden for various reasons. He’s a teenager preparing to go into high school, and he wants to be with the friends he knows after I pass.

Jillian’s son Jayden

When I pass, Heather has offered to raise Jayden and be his guardian. Knowing he’ll be with her puts my mind at ease; I know my family will be there to help and support as well. I think Heather and Jayden will make a great team; they’re both stylish, all about their hair, shoes, and snazzy. Maybe one day during one of his football or basketball games, Heather will meet a nice man, who knows? There are plenty of terrific men out there, and I just feel during a sporting event is when she’ll meet her potential next partner, and they’ll grow as a family.

Heather is very special in my eyes; I already know her and what great qualities she has to offer. I know she’ll do right by my son and raise him as I would, if not even better. It’s a lot to take on, there are truly not enough thank you’s or hugs and kisses I can give. But, I promise I’ll be looking down from above trying as hard as I can to guide you both or leave a sign letting you know I’m there.

It takes a big heart to do what she’s doing, but I wouldn’t expect any less from her. You will have my first born one day; he’s very special to me. I know you love him too and that love will continue to grow. All children really need is love and attention, no matter what their age. Never stop hugging them, kissing them, and praising them, this is what they’ll always remember. All the good memories and feelings we leave behind for them to pass down.

Heather, I love you more than you’ll ever know. When I do pass on, think of the fun times we had together, all the silly things we did that drove our parents nuts. Remember that life is short. Live it, be kind, say whatever you want to say, how you’d like it said to you. You’re in control. Look at yourself in the mirror every so often and remind yourself how bad ass you really are. You’ve accomplished a lot and I wish more women could see what you’ve become and how it’s achievable. Never doubt yourself. We have more power within ourselves than we truly realize. Feel it, know it; because I promise you it’s there my friend.

Love, Jillian

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.