Jay’s Journey

Jay's Journey:

2018 was a year I will never forget. It started off on January 27th, the day I married the most incredible woman I had ever met. We had spent a year planning the most beautiful winter wedding and shared the most perfect day with all of our friends and family. I had finally married my best friend and the woman who balanced out my life and brought so much love to me and my two children. Karrie and I had initially decided to skip on our honeymoon because we just didn't have the money for it after all of the wedding expenses. It just so happens that January 29th, two days after our wedding, was my wife's birthday. After a relaxing weekend of being lazy, I rolled over in bed to Karrie and told her we were going on a honeymoon. After calling my boss, who I happen to have an "in" with (thanks Brother), he gave me the rest of the week off and we started making immediate plans. I preferred a tropical paradise while my new bride had always dreamed of a Disney vacation and swimming with the dolphins. What's that saying? Happy Wife, Happy Life? We booked the next flight to Orlando and had a magical week in Disney to officially kick off our marriage. We flew home on Superbowl Sunday in an attempt to watch our beloved Patriot's with family and friends, but the weather had other plans. After ending up with several delays and missed planes, we finally arrived home to Portland, Maine only to find out that the Pat's had lost to my cousin Casey's Philadelphia Eagles! It's okay, we'll get it this year. Go Pat's!

My perfect year continued with my son Preston completing 7th grade with High Honors, playing basketball, wrestling and lacrosse. By the time they calculated snow days in, it was a short summer. We still managed to squeeze in quality time with friends and family on our boat. Life on the lake doesn't get much better than summertime in Maine. Preston's 8th grade football season began in August and ran almost nightly through November. Once that ended it was time to unwind a bit and spend the upcoming holidays with our family. The first of the major holidays (or the ONLY one if you ask my wife) is Halloween. Karrie goes all out with decorations and stockpiles full-sized candy bars for the trick-or-treaters who visit her parents' haunted-themed porch. This is a tradition that Karrie loves to carry on year after year with her parents. Meanwhile, my family gathers at my mom's house for Halloween and enjoys her homemade chicken noodle soup before heading out. We hook up a decorated trailer to the side-by-side filled with bails of hay and take all of the grandkids around the neighborhood to trick-or-treat. The kids' bags are completely filled with candy and a good time is had by all.

The next holiday is always my favorite: Thanksgiving. This past November I had been feeling congested in my chest and had a bad cough. I shook it off for a few days, assuming it was nothing more than a bad cold. My family finally convinced me to go to our local Quick Care and get it checked out. They gave me a nebulizer treatment there and an inhaler and some cough medicine to take home. A few days later I broke out in a rash and was still not feeling well in my chest. I continued to work all week and when I got home at night and removed my socks I noticed swelling in my knees and legs. This was very unusual for me. It concerned me enough to call my primary care doctor and make an appointment for later in the week. He did an x-ray of my knees and said I probably had arthritis from the line of work that I am in, which is pretty physical. He suggested doing some physical therapy and gave me a prescription for steroids. I left his office and returned back to work that same day. I began waking up at 2 or 3amevery morning and could not fall back asleep. I brushed it off thinking it was caused by the steroids he had prescribed me. I stopped taking them and nothing changed, I was still waking up at all hours of the night. Karrie noticed the severe swelling in my feet one night and I assured her that if I elevated them the swelling would be gone by morning. We were in the middle of a big project at work and I wanted to be there. The swelling continued daily, along with the tightness in my chest. I would drive home feeling strange but continued to tell myself it was caused by the long work week and I'd be fine once I had some solid sleep. I can be pretty stubborn.

The next morning was Saturday December 15th. It started off like every Saturday for the last month by taking Preston to the gym for his 8am workout. We arrived early (as usual, if you know me and my desire to be early for everything) and after he went in to see his trainer I sat outside and started feeling discomfort in my chest. I decided to go to the local pharmacy to check my blood pressure. Low and behold, they didn't have a cuff machine for me to check it myself. I was frustrated and went back to wait for my son to finish up at the gym. While waiting, I placed a call to my good friend Lance to see what his weekend plans were. We chatted for a bit, like we do every single morning and have for years, and shortly after we hung up my wife called me. Lance had called her to tell her that my speech was slurred and that something was "off" about me. He was incredibly concerned. Karrie told me that her and Lance wanted me to go directly to the hospital. I told her I didn't need to go and that I didn't have time, I had errands to run. Lance called me back a few minutes later and wouldn't let it go. He said I sounded different, my speech was slurry and that I needed to get myself to the hospital immediately. After he got a little pushy with me I finally agreed to go to the ER on the way home. I was not going to win this battle with both Karrie and Lance on my case like that. When Preston wrapped up training, I walked in to the closest ER and said "I have good health insurance and need some answers before I leave".

They placed me in an ER room, took x-rays of my chest and checked my heart. I wasn't nervous at all, but then again never in a million years could I have been prepared for what came next. He came in and said we found a large mass on the x-ray and it's a good possibility that it's cancer. I was shocked. Imagine hearing those words, it was like getting hit in the face with a shovel. I'm 38 years old. I just married the love of my life. I have two wonderful children. I am coming off of the best year of my life to have it end with this devastating news. It took me a few minutes to compose myself when I asked the Doc, "what's next"? He said you move over to Maine Medical Center by ambulance as soon as they have a bed ready for you. It was all day before a bed became available on the Gibson Floor at Maine Med. Once I was settled there they began to schedule a biopsy and blood work. The results would soon tell me what kind of cancer my battle was with. Finally, I had some answers. One of my team members came in with the results and told me it was a very rare case that they may never see again due to the location of the Neuroendocrine Tumor, and what it was releasing. This tumor around my chest was causing all sorts of other problems in my body. I was also dealing with Adrenal Hyperplasia, Hypertension, Hypokalemia, Hypercortisolism, Thrombocytopenia, and has also caused me to have Cushing's Disease. Try saying all of that three times fast!

I continued to stay at MMC for more testing, but I really wanted to be home with Karrie, Cailin and Preston for Christmas so the doctors let me go home for a few days to be with my family. It was difficult during Christmas week to schedule my PET Scan, make it to other appointments, follow a strict schedule for medication intake, and deal with an incredible lack of sleep. The major swelling had returned to my legs and feet, almost to the point I couldn't walk. I made it to Saturday, but after trying to do some errands with Karrie that morning, the tightening in my chest, blurry vision and slurred speech had returned. I found myself back at MMC and was admitted once again. On December 30th I found out that my blood sugars were elevated and I am now diabetic. Learning to count carbs and inject myself with insulin has been eye-opening. This is just one more thing I have to deal with for now. A team was assembled to perform open chest surgery to remove my tumor, however the results from my PET scan showed that surgery was no longer an option. They have been treating me twice a day for 4 days now with Octreotide to try and cause my tumors to go dormant or to at least stop spreading. They are slo going to remove my adrenal glands later this week in an effort to help relieve some of the other symptoms I am having.

As soon as I am able to, we will be heading down to Dana-Farber Cancer Institute in Boston for more consults. We've decided at this point that this is our best plan of action to fight this and move forward. 2018 certainly did not end the way I thought it would, but I have an amazing family and friends who love us and will support us through this journey.
No amount is to big or to small, and your prayers are greatly appreciated. Thanks a Million for all your support.
Sincerely Jay Steeves and Family,