The Frog List

image“I can use all the prayers I can get!”

In August 2011, Jessica Rice had a little cough—‘nothing to worry about’–and a low grade fever that kept her out of work a couple of days. By early October the cough became “productive.”  She did what any healthy, 30 year old Vice President of Global Projects at Citi Corporation would do–she went to the CVS Minute Clinic for some antibiotics.  Since the cough had been around for a bit, they sent her to her primary care physician.  Convenience always paramount, she found a physician who practiced in the building where she worked.  He said she had allergies.

By the end of October, she’d been sent to a rheumatologist and was coughing up blood.  Finally admitted to the hospital November 8th, she relates,  “I left work Friday as someone who just seemed really sick, and by Monday, I was stuck in the hospital .. .with a mystery illness that wouldn’t get better.  Didn’t know if I would ever get to even go home at that point. ”  It took six days of testing to find out she had lung cancer.

Not a smoker, with no family history of lung cancer, Jessica’s diagnosis is an extremely rare cancer called bronchioloalveolar cell carcinoma in the diffuse form. With this form, surgery is not an option.  Her cancer is stage 4—there is no stage 5.

When she learned her diagnosis, she wasn’t told a prognosis, “I believe…there are far too many variables to give an accurate prognosis,” she says.  “I do ask my specific questions regarding timelines. For example: If I have zero response to this treatment and my tumors continue to grow at the same rate, how long until I succumb to them?”

Until she lost her hair, in August 2013, she didn’t even look sick.  “People didn’t understand why a normal, younger adult was being pushed around the mall in a wheelchair.  Or why I parked in handicapped spaces.  It was a bit annoying, watching people scan me up and down, trying to figure out my defect…” Jessica states.  “Seth (my fiancé) and I have coined it “the jaw drop” when people find out.”

Lung Cancer: The Facts

Currently, most people are diagnosed with lung cancer at stage 3 or stage 4.   According to radiation oncologist Dr. Matthew Katz, “Our ability for early detection is poor and earliest symptoms are pretty silent or nonspecific.”   As Jessica writes in her blog, “Lung cancer tops the list with the highest number of deaths for both men and women.  In fact, it kills nearly the same amount of people as colon, breast, pancreatic, and prostate cancers combined.”  Though her former life didn’t include this type of advocacy, Jessica is now using her writing and social media skills to share her story and bring the lung cancer experience to light.  In her blog post ‘Lung Lost Love,’ she continues to describe  the terrifying statistics around this disease “The 5-year survival rates for stages IIIa, IIIb, and IV are 14%, 5%, and 1%, respectively.” And she notes that, even if it is caught early, treatment doesn’t result in much improvement—5 year survival rate for stage IIa non-small cell lung cancer is 30%.

Jessica has been fortunate to have oncologists  that she can trust.  “My oncologist is up-to-date on the latest treatments.  And when I would ask about consulting with another doctor, he would encourage me, reach out to that doctor himself to discuss my case both before and after I met with them.”

One positive outcome is the proactive work these physicians have done on her behalf.  “The hospital pulmonologist and my oncologist (before I ever met him) sent my biopsies for EGFR and ALK testing automatically. It seems that some people have to request this from their doctors, so I feel fortunate that mine were up-to-date on the latest treatments and didn’t hesitate to take action. (I did test ALK+, and the targeted therapy crizotinib was my first line of treatment.)”  Since her diagnosis, she has had 6 different treatments including a clinical trial and radiation.

This past June, Jessica had a gran mal seizure.  Fortunately, she received emergency care and survived without severe disability.  Unfortunately, the seizure signaled that something had changed.   This brilliant woman–a Wharton business school graduate – (now age 32) has brain metastases.  In her blog she writes, “If abnormal organs are prone to defects then my brain would be the lightning rod of my body. My entire life it has been my blessing and my curse. It’s riddled with more IQ points than even I believe and an intuition that can border on creepy.”   She’s coined a phrase for the tiny metastases that can be seen on MRI scans as “brain lint.”

“My Frog List”

Awareness of her mortality ever present, Jessica wishes “someone on my medical team would talk to me about what I want towards the end. After my seizure, I know it could come anytime.”  Some of the things she wants are found on her blog. “The term bucket list was made most popular by a movie in 2007.  Everyone knows it means that these are the things you want to do “before you kick the bucket.”  Honestly, it seems a little cold and crude to me.  And, never one to blend in to the crowd, I decided to think of something a little more creative, a little more me.”  That’s why she calls hers My Frog List .  “My Frog List is what I want to do before I croak!”

Jessica grew up on a hobby farm.  She and her mother (her “best friend”) now own a small hobby farm in West Virginia.  “Our animals are our family,” she says.  Part of her frog list is about bringing home and family closer. “Sometimes I look for normalcy more than anything else,” she relates.  Her frog list would bring normalcy to her life. “My Frog List is relatively short. Top priority is to get my mom (and our animals) closer to me. Need to do this ASAP.  After mom is close, a Wedding and Honeymoon,” she says.

Making these dreams a reality is possible but only with the help of others.   Friends have set up a website to make the move, her wedding and her honeymoon a reality. “It’s comforting to know that I’m not alone – WE (Seth and I) aren’t alone – as we go through this.”

You can find out how to help by visiting Stage IV Blog and YouCaring.com.

“I really want to thank you all for … listening to my rambling, reading my blog, and sharing my story,”

Based on #HCHLITSS transcript September 12, 2013  #LCSM transcript September 5, 2013.  Thanks to the Healthcare Hashtags Project