Kyle Mead
My Story actual began in August of 2001. I grew up playing tennis all day during the summers and back then it was cool to use oils and get as tan (burnt) as you could possibly get. My wife noticed a mole on my back and it had a little blood coming out of it. Suggestion one: if you ever have blood coming from a mole go get it checked immediately. Actually if you have any dark blackish moles with irregular borders you need to get it checked, don’t wait until it bleeds.
At that time it was classified as Clarks Level 3. It wasn’t classified as stage 4 but when it gets into the blood stream it has a tendency to travel. 2001 is like ancient history in the cancer world. I mention that just to say that the advances in the cancer meds are happening at light speed now so what was a death sentence several years ago may now be treatable. That is exactly my case. I won’t go into great detail but at that time in 2001 they cut the melanoma out along with all my lymph nodes that drained in that area on my back and underarms. I had no chemo or radiation at that time. I had pet scans every 6 months for the first several years and then about every year for about a decade – essentially until insurance stopped paying for them.
Life went back to normal and then in about April of 2018 I started coughing at work. It wasn’t a terrible cough it was just consistent. As that persisted I started to experience an increase in fatigue. As it progressed it became a real chore to walk up steps or just walk any distance at all. On May 6th I was awakened from a nap with a sharp and unknown pain in my chest. I thought I was possibly having a heart attack. Again, without going into great detail the ER gave me some pain medicine and I did a stress test on a treadmill. I stayed overnight and they released me in the morning with the comment that it might just be gas because I have reflux??? There were no scans ordered of any kind. If you have any history of cancer and go into the hospital for internal pain anywhere in your body I would personally recommend that you advocate for scans in light of your history. For unexplained chest pains that essentially brought me to my knees it was negligent that I didn’t have any scans done.
I went back to work for about 6 weeks and my conditions all drastically worsened. I even had a follow up with their cardiology department and because I’m overweight, they excused my fatigue as just not being in good enough shape. My point here, is no matter what condition your body is currently in, we all have some sort of what I would call a “baseline normal”. If any kind of pain – fatigue -cough – discomfort – takes you consistently outside of how you normally feel, go to the doctor as soon as you realize this just doesn’t feel right.
After 6 weeks I was still feeling out of sorts so I just went to my regular doctor and fortunately from my explanation he sent me to get a scan immediately at his imaging group. I got the scan and headed back to work. As I’m driving back to work they called me and told me to go straight to the ER. The image showed my heart region was severely enlarged. I went to the same hospital that had treated me previously. I had what is called a Pericardial Effusion. That is when the sack around your heart fills up with fluid. They removed more than a liter of fluid from the area and I was in the hospital for 5 days getting tested. I had ONE cardiologist in charge of my care at this hospital. I left with no definitive answers and no direct cause for the event. If you hear those words as you’re leaving a hospital – even if you feel relief it is time for a second opinion at a new venue if you know what I mean. Instead, I went back to work for another 6 weeks until July 29th. All my symptoms had continued to worsen. That evening I fell to my knees and felt like my body was shutting down.
I finally decided that I had to go to The University of Kansas Health Center. Within 5 hours in the ER they were able to tell me that I had a large tumor surrounding my heart that was very likely some form of cancer. It was those words you never want to hear.
Where you get treatment really matters!! I can’t stress that enough. I’m sure you’ve heard the commercials where a KU Doctor says he’s had several patients that have said they wish they would have come here first and that more minds make a difference. IT IS ALL TRUE! I had like 5 teams of doctors come in and see me within my first couple of days in the hospital at KU. Yes some were interns because it is a teaching hospital, but don’t count them any less important. In my particular case, I had an Intern that followed her lead doctor around and did all the things she was supposed to do. Then after her normal shift she would come back in my room and ask me, “OK, what information didn’t you understand? What other questions do you have?” She just talked with me about it. She didn’t sugar coat anything it was just raising my awareness and understanding of everything. It gave me that extra piece of hope that gets you past thinking the worst and allowed me to maintain a really positive attitude.
My biopsy confirmed that I had an inoperable stage 4 Melanoma tumor essentially wrapped around my heart. KU had also consulted with MD Anderson in my situation. Another bonus that I’m not sure you find everywhere. I was in the hospital for 15 days. At the time I was being discharged we didn’t have a solution figured out yet but we were waiting on some more test results and I was about to start my journey with the KU Oncology team.
I left the hospital on a Thursday still waiting on additional test results. I met my oncology group like that Friday. That intern I mentioned had a family connection to my new Oncology Doctor and a good friend of mine’s wife worked with this group. You’d be surprised how many people you may know that have already experienced some of what you’re about to encounter. My recommendation is to not keep it a secret; any and all additional support outside your family just makes you feel better. I had so many people visit me in the hospital it was really nice, and a good break from the hospital routine. Not to mention all the extra prayers you’ll get.
That Saturday I got a call from my new Oncology doctor that my tumor has this BRAF mutation and because of that there is a new, targeted therapy drug combination I could take. My new Oncology Doctor actually drove to my house that Sunday and discussed the plan going forward. I was super surprised to see him at my door but that also was a sign of how urgent it was that I get started on this new treatment immediately. In essence, my condition when I finally got to KU was terminal (they said later that their initial diagnosis of my condition lead them to think I had several months at best), but that these newer targeted therapy drugs would really be my best option. We discussed radiation and chemotherapy, but because the tumor was on my heart most other treatments were ruled out or were considered more last resorts.
I immediately started treatment, a combination of two types of targeted therapy drugs (currently a combination of Braftovi and Mektovi). The tumor on my heart made it uncomfortable to sleep in a bed normally, and to this day I am more comfortable in a recliner. I was really sick for about 4 months, with really high fevers being the worst. I would get the chills so intensely I would shake uncontrollably. I had several other side affects but you learn to make them routine at some point.
I can’t tell you how much your own POSITIVE attitude will help you get through this and that what I found out was I actually had a lot of friends that had all experienced some significant health situations that I had never known they were even sick.
I didn’t post my situation on Facebook or anything but I didn’t ask anyone to keep it quiet. Looking back now, I think letting people know is a good thing no matter how you do it. Even Facebook is usually a filter of people that have some connection to your life so why not, whatever brings you comfort. The smallest thing that someone does or says may intentionally or unintentionally ignite a spark of HOPE.
A few extra minutes that an intern gave me daily opened up my outlook.
My take away is this – a terminal diagnosis isn’t always that, and any additional unknown time (with your KIDS-family -friends) is a blessing for so many reasons.
I am now going on three years this July. Most of my good friends have not only reconnected with me but this has brought so many old friends back in communication with each other. It has been something I have really enjoyed. I believe for all of us, less is taken for granted. I can personally tell you everyone that has reached out (no matter how good of friends we were) always made my day just a little bit better.
If anyone has any questions I’d be happy to share anything helpful I can.
Thanks and God Bless!
