To friends, family and everyone in between, this is my story:
Life will always find a way to surprise you. Around the beginning of December of 2015 I went to a normal doctor's appointment to get looked at because I had a sore throat. At the end of our appointment I remember wanting to show him a mole-like spot on my right armpit. I was curious. Something just didn't look right about it. His best guess was that it was an inflamed skin-tag and I could come back in a couple of weeks to have it removed. We both wrote it off.
Weeks later I had the mole-ish/inflamed skin tag removed and sent to a lab for a routine biopsy. Out of sight, out of mind.
I went back to business as usual. For those that don't know, I am 8 years self-employed as a music producer / recording engineer at a studio in Maplewood. Roughly 2 weeks after the biopsy, I'm in the studio and I get a call from my doctor and he asks if I'm sitting down. (Sidenote: I truly thought that kind of etiquette only happened on daytime TV.) He proceeds to tell me that the sample tested positive for melanoma and that it appeared to be very aggressive. He recommended some doctors or something, but honestly that moment is extremely blurry. I know I walked back into the room where the band was and maintained my composure for about 30 seconds then just lost it. It was something I truly believed could never happen to ME.
The next few weeks were a crash course on learning how we were going to fight back. I officially had Stage 3 Melanoma. My wife and I assembled a team of doctors we felt comfortable with and set the plan in motion. I cleared my work schedule for the foreseeable future.
On February 2nd, 2016 I had surgery to remove the remaining melanoma tumor from my right armpit as well as a few surrounding lymph nodes to biopsy. A few days later, we learned that some of the lymph nodes tested positive, so on February 9th I had a second surgery (axillary dissection) to remove more lymph nodes. A February 15th PET scan indicated that I was clear of cancer and established a baseline for the future. It was time to discuss preventative treatment.
On March 15th, I began infusions of an immunotherapy drug called Ipilimumab (Yervoy). Basically, it supercharges your immune system to go after rogue cancer cells in the body. It's like the Terminator, except for metastatic bullshit. I completed about three months (75%) of the first round before I experienced an extreme side effect: the worst, constant migraine of my life.
On May 11th I went to the ER in the middle of the night because the pain was so bad I couldn't sleep or concentrate on anything, except the pain itself. It literally felt like my head was going to explode. It pulsed in back of my head. Something wasn't right. The ER doctors did a CT scan but found nothing. I was given Valium and Percocet to deal with the pain until my Oncologist could figure out what was happening.
Later that week, I had an MRI done of my brain. It revealed a swollen pituitary gland, pushing against the base of my brain, caused by the immunotherapy drug attacking it. It felt exactly how that sounds.
On May 25th my Oncologist made the call to end immunotherapy treatment because that particular side effect could potentially kill me. I was put on a steroid called Dexamethasone to reduce inflammation of my pituitary gland and give me some relief. Unfortunately, Dexamethasone's many side effects really wrecked me. I was irritable for no reason, had extreme insomnia, gained a ton of weight and felt an overall muscle weakness. I was miserable. I had to get off of it as soon as I could. We staggered the dosages down until mid-July at which point I safely stopped taking it.
I started feeling like myself again. From August 11th to September 27th I did physical therapy to regain proper movement of my right arm (caused by the surgeries) as my wife was planning for our October 8th wedding.
Unfortunately, during that time I started feeling extreme fatigue and unbelievable muscle soreness. It became more and more difficult to get out of bed. It turns out that the dexamethasone had damaged my adrenal system/pituitary gland. On August 22nd I was referred by my Oncologist to an Endocrinologist, who finally saw me on January 1st of 2017, where I was prescribed Prednisone for adrenal fatigue/Addison's disease. After a few rounds of lab work and imaging, my doctor was fairly certain I will continue to be on it for the rest of my life. I can only laugh at the chain reactions I've experienced thus far.
On February 13th I had a CT scan of my chest that revealed NO metastatic disease. It was a huge relief and life continued as usual.
March to September, I continued to have routine scans done. During a CT scan in September, it revealed a few tiny, scattered nodules in my lungs. They were too small to biopsy so my Oncologist decided to monitor in a few months with more imaging.
On December 5th another CT scan showed the pulmonary nodules to be growing but a December 14th PET scan did not find cancer anywhere else in my body. Again, everything was too small to characterize or biopsy.
Around the 2nd of April, 2018 I started feeling extreme discomfort in and around my abdomen and I lost my appetite to eat. I became nauseous and would vomit on an empty stomach. My primary care physician put me on a drug to treat IBS (as she suspected). I tried it for a few days and felt even worse. After almost two weeks my abdomen had swollen like a beach ball and I knew something was wrong, so my wife and I went to the ER on April 13th. They did a CT scan of my abdomen and found new cancer in my peritoneum (the thin skin of my abdominal cavity) and indicated that my pulmonary nodules are continuing to grow.
This type of cancer is almost always secondary, meaning it's my original melanoma showing back up to try and ruin the party. My oncologist confirmed that the nodules in my lungs are also metastatic melanoma.
That brings me to the reason for telling you all of this: I have cancer again.
And in addition, our situation is a bit different now than it was back in 2016. Unfortunately, my business has been struggling for the last six months and I have no savings to help us manage through this. We stretched ourselves so thin during the last two years of hospital trips, copays, hospital bills, lost wages, utilities, car payments, health insurance and paying for our wedding that we were never able to get back on our feet. Even with Ashley working 40+ hours/per week, we still weren't able to make ends meet. And now with my new cancer diagnosis, it's been overwhelming to say the least.
So here we are, I began chemotherapy on April 24th. The list of side effects is 4 miles long. I'm currently not working so I can be prepared for when they happen. I feel incredibly uncomfortable and vulnerable writing this, but at this time my wife and I need your help. - Matthew Joseph Amelung
If you'd like to be a part of the fight, we have set up this GoFundMe account. There is no set amount of money to "reach our goal," but we have started the goal at $5,000. Your donations will be put towards paying bills and creating a small savings for whatever we'll be tackling next. We will keep you posted on my progress and treatment as we tackle each day and each week with hope and gratitude. Please keep us in your thoughts and if you have any questions for either of us, please reach out.