Community Spotlight: Jessi
After a surprising and shocking lung cancer diagnosis, Jessi was unsure what would come next. Her family and community stood by her through treatment unknowns and difficult decisions. Jessi’s Journey is one of persistence, hope, and continuous encouragement as she now works to give back to the community that supported her when she was first diagnosed.
My story starts after a seizure...
Hi, my name is Jessi Colwell. On Dec. 3, 2015, at 33 years old, I had a seizure. At first, I thought it was a stroke but after being assessed at Rockdale Medical Center, the doctor ordered a CT scan and found a mass on my brain. The doctor then came in to tell me and my family they couldn't help me there.
He had made calls to Piedmont, Emory, and Kennestone hospitals, and whichever one called back first would be where the ambulance would transport me. I was terrified, to say the least. It was Piedmont!! After arriving at Piedmont Atlanta late on a Friday night alone because my husband couldn't be there (he had to go get his truck off of the job we were on and go home to be with Avery who was 13 at the time). My best friend since 7th grade and her little sister were waiting in my room with me. I was started on Keppra for seizures and some other meds. I got very little rest that night knowing I was on the oncology floor...but still not really knowing anything yet.
Waiting for surgery and answers
The following morning my neurosurgeon, Dr. Kaveh Khajavi, would come in and speak to me about my options for awaiting brain surgery and my insurance. After our chat, we decided it was best for me to wait there to have surgery. He would work me into his schedule ASAP because no matter if this was benign or not it had to come out or I would continue to have seizures with each one getting worse.
During my time waiting for surgery, I had numerous visitors, phone calls, and text messages. I also had physical therapy to help me learn to walk with a walker due to left side weakness effects from the tumor pressing on my brain.
A diagnosis I didn't see coming
Days later I had brain surgery to remove the tumor. During the surgery time, a sliver of the drill bit was in my skull confirmed by a CT scan so the next morning I went back in for that to be removed. Honestly, I don't remember anything about the second surgery.
After pathology and other tests were done, we had the worst conversation yet...the diagnosis of stage IV NSCLC. Just a few days later I finally got to leave the hospital to return home to my new normal. That was just the beginning of "hard"...
I was hoping for surgery
I then went through radiation treatments to my brain as a precaution. During this time I had fallen out of the shower and broke my collar bone on the left side, but that was better than hitting my head that was slowly healing. After knowing that it was lung cancer, I hoped for surgery to remove part of my right lung to leave me cancer-free for as long as possible.
After completion of a PET scan, my husband Johnny and I went to Emory to meet a cardiothoracic surgeon. This was such a disappointment because at this time my cancer had metastasized not only from my lung to my brain but to my lymph nodes and my right arm. This disqualified me for surgery. I was devastated.
My next option was conventional chemotherapy. After having my port placed and two chemo infusions Dr. Tran my oncologist ordered a CT scan and showed I had progression. At that time, Johnny asked how much time they suspected I had. When I asked that question in April 2016, I was told 1.5 to 2.5 years, less than 10% make it 5 years.
Finding a lifesaving treatment option
At this time, I began preparing myself and my family for our worst-case scenario, I did my advanced directive, bank paperwork, and let everyone know my wishes. After failure on chemo, I was then a candidate for Opdivo. I have been doing it ever since, this has been a lifesaver for me.
I know regardless of when God says it’s my time I will go home and I'm okay with that but I am not in a hurry to get there. This year in December marks my 5th year of fighting. This hasn't been easy but it has sure been worth it. In my story, I say "I" a lot...but it was truly US as a family.
Beyond grateful for my healthcare team
I feel like Piedmont is my A-Team. All of the doctors, nurses, and personnel who have taken care of me has been phenomenal no matter which campus or office I’ve been in. We have learned as a family to trust in them. I’ve learned to look at doctors' visits and routine hospital visits as seeing my “friends”, after years they get to know you, watch your kids grow up, wipe your tears and give you hugs.
It's our lives we're fighting for!
Initially, Johnny and I went to Emory and met with a cardiothoracic surgeon that, after reviewing my PET scan, explained that I wasn’t a candidate for surgery and he wouldn’t perform it because he wouldn’t be helping me. After that, I completed a few weeks of traditional chemo which failed me because my tumors increased in size.
At this time, my oncologist Dr. Tran recommended trying a new immunotherapy and I agreed it was worth a try. I was approved for Opdivo because it was a second-line treatment at the time because conventional chemo failed. We then began Opdivo every other week. I did that for about 3.5 years. Within the last 1.5 years, it was approved to be given every 4 weeks, so that’s my regimen now. We have to advocate and be up to date because it's our lives we're fighting for!
A 'story of us, not I'
Every day since my diagnosis, cancer is in our lives and things will never be as they were before. We now have a new normal such as tons of doctor visits, test results, and the need to be super aware of germs that can make me more ill than my family because my immune system is weaker.
My family has been with me every step of the way. Johnny pushed me to not give up and keep hope alive. He encourages me through the good days and the bad days. Avery (our son) gives me the strength to fight on to see the milestones he will surpass. We have been through the darkest days together.
I tell myself that they both need me, as they both remind me daily. They give me support, unconditional love, and the “motivation” to keep fighting. I’m often reminded by extended family and friends that God has a plan for me and “my story” because He keeps waking me up, I’m not done yet, so I talk to everyone.
Creating Jessi's Journey
At the beginning of my diagnosis, I didn’t know where to begin. I was struggling with how to make transportation arrangements since cancer left me weak and disabled. Family helped as much as possible. Medical transport helped if I booked trips for 3 weeks in advance.
In March 2017, Piedmont Henry arranged for Samantha Mixon to come up and meet me. She introduced me to the world of online support. I joined several groups, the survivors in them know exactly where you are to some degree. They often understand feelings and situations others don’t. They also usually have information they will gladly share if you just ask. You can often find support in these groups.
I feel like encouraging and helping others is why I’m here. So far, I’ve shocked my care team because honestly, they didn’t think I’d make it this far. That helped inspire me to reach out to others. I started to tell my own story because I want to advocate and raise awareness.
My page as well as others are safe places to share how you feel or comment about your experience. I started Jessi’s Journey on Facebook so that I could share my story and encourage others to fight-on. I encourage followers to share my story and posts so that it may help others.
Advice to others living with lung cancer
Never let anyone give you an expiration date. Surround yourselves with the ones you love. Tell your story because you never know who you’re helping. Keep your faith. “Fight on because Cancer Sucks!”
Reach out to your oncology social worker at your cancer center, they can usually help with resources, ask for them.
Have you had biomarker testing done?