Hello all!

My name is Jamie Covelli and this is my first support group. I am currently 32 and just finished my third surgery for Squamous Cell Carcinoma. My first surgery was in September 2019 and six months later my second one took place February 2020. While working with my providers and unknown to the cause of how I got this, I have continued to navigate through this disease and learn more about it. Within the last six months I was also diagnosed with an autoimmune disease called Ankylosing Spondylitis. The last three years have definitely been challenging with health and rolling through life. I recently found my new spot (thankfully pre) which caused me to have my third surgery about three weeks ago now! The same week would have been my 2.5 year anniversary marker and actually closed on my first house on my anniversary.

For the most part I am your typical 32 year old. Enjoy spending time with family, friends, being a super aunt to my nieces and nephews! They are my world! I’m a full time Medical Assistant for a larger healthcare organization in WI. With my health changing from being a healthy kid to slowly becoming sicker it definitely has brought many mixed emotions. This time around two years later has been a bit more challenging. Learning to navigate through a new chapter in life of being a homeowner and being able to balance my health issues, life life and make as many memories as I can. I’m looking forward to learning and growing insight with this group and connect with fellow cancer survivors and current battlers like myself. I am also curious to see if any of you have had autoimmune diseases since you have had your cancer.

Look forward to learning and growing with you all!

Take Care!

Jamie Covelli

Hi Jamie

Welcome to OCF. Wow, that is a lot to process in a couple years. I am so sorry you have gone through this 3x. You are a warrior! I can not comment on the autoimmune disease so hoping someone else can respond to that.

But, I can offer some coping ideas from my experience. In April of 2020, I had surgery for stage 4 tongue cancer, they removed half my tongue, all nodes on that side of my neck, rebuilt my tongue with skin and artery from my left forearm, rebuilt my forearm with skin from my upper thigh. Had a trach tube for breathing and a feeding tube in my nose. About 2 months after surgery, I received 60Gy units of radiation to my mouth and neck area. Recovery was 6-9 months depending on how you define it. I am still recovering flavors today (rads trashes your flavors and jacks up your sensativity).

I recommend a book titled Anticancer. It has oodles of data on where cancer comes from, how to live healthier to avoid it, etc. A short read on the internet I like - search on cancer is like finding a lion in the fridge. Makes me laugh and cry every time.

I also used many techniques to get my life back to pre-cancer levels. I journaled, studied cancer, read, exercised, practiced faith, reached out to loved ones and old friends, mindfulness, yoga, meds, food, etc. For months, I measured each daily. I had a spreadsheet and would score myself. High scores meant a treat (favorite dessert, movie, whatever). I was only working part time from home so it made it easier to get most activities in daily. These things lifted my spirits, kept me busy, and helped me stay focused on recovery. I had to learn to be patient especially with food. Here I am 2+ years out and i still find new flavors coming back.

After about 3-4 months, I had most of my life on track. I was not yet full strength work and exercise but i could clearly see the path. The spreadsheet slowly disappeared and life kept inching back to pre-cancer levels. I have constant reminders of the experience as my speech is different, my dental bills are approaching a house payment some months, and my neck and shoulder are nearly always tight.

But, I also was able to grow my faith to a level that I never imagined. So, essentially, cancer ended up being a gift of faith wrapped in a giant bag of cancer crap! Besides time with loved ones, journaling was probably one of the best short term tools for my mental health. And, practicing faith has been my best long term tool.

Hope some of this helps. Stay safe and keep the faith.

Nels

Nels,

Wow! You my friend are quite the warrior! Thank you for sharing your journey and giving me feedback with mine. Quite a road you had but sounds like you learned to grow as well within yourself and that is huge! I have always been one to lean into leaving to the big guy and with this one I keep trying my hardest too. I also remind myself often, many cancer warriors have had it harder..like yourself, not to discredit myself to remind myself so many keep going and you will too! Thank you for your suggestions! I definitely think I am going to try a few!! Leaning in more on my faith, making more time for me, enjoying making memories with loved ones as we know how short life truly is.

Thank you for your support! I’ll be praying you continue to heal!

Take Care!

Jamie