For those of you who don't know me, I figured this would be a good time to talk about how I got to where I am.
Well, my story actually starts about 5 years ago when a mysterious mole appears on my right temple just within the hairline. It was not a mole in the traditional sense, but more like a large freckle, about the size of a nickel and flat. I let it go for a bit, but eventually went to the dermatologist to see what it might be.
My dermatologist looked at the mole briefly, but didn't seem to concerned about it. He said it was an "unusual mole" but looked benign and that was the end of it. I figured everything was ok and let it slip from my worries. In hindsight, I would have insisted on a biopsy and had it removed while it was still "small." I encourage anyone else to do the same if they have any suspicious mark.
Fast forward to spring of 2016. I noticed my mole was looking much darker. It had also started to spread out and almost doubled in size. This was all in a two week time span. I went in to my primary care doctor to have her look at it. She agreed it was suspicious and referred me back to the dermatologist. Actually when she first saw it she said "eww." Not the most comforting words. I made my appointment, but the first available date was over a month out. My dad suggested I find a different dermatologist that would be able to get me in sooner so I found one in Kenosha and they got me in the next week.
When I arrived for my appointment, I had several doctors looking over my mole. They were all discussing what it could be. I think they all knew what it was, but they needed to do a biopsy just to be sure. Now this is the part I wasn't expecting. They wanted to do the biopsy right then and there. They brought out the needles and scalpels and gloves and had me lay down. They first numbed the area around the mole, then they started the cutting. The doctor was just hacking away near my eye while another nurse was wiping up all the blood. Even though it didn't hurt, it was hard not to wince during the whole process. By the time he was done, he had taken out a pretty big chuck from my temple.
Here comes the waiting game. It was a whole week before they called me with the results. I kept telling myself that it was probably nothing and that they would call me much sooner if it was cancer, so the longer I waited, the less worried about it I became, even though I could see some dark spots growing in my biopsy site. Then came the call. "It came back as melanoma. You need to find an oncologist ASAP." My heart sank. I have cancer? I was only 34 years old...
What came next was a whirl wind of appointments and scans and surgeries. First step was to get a wide local excision to remove all of the tumor with clear margins and at the same time they wanted to take out my sentinel nodes, which are the lymph nodes that the area drains to first. To do this they inject a blue dye around the tumor and see where it goes to first. They put me under and took out a 7 cm wide area around my temple and 3 lymph nodes from my jaw area. The plastic surgeon also removed an area of skin from my right shoulder to try to fill the gaping hole on my head. They sent the nodes in for biopsy to see if the cancer has spread to them. Sure enough, they found cancer in all 3. Next step was to go back into surgery 2 weeks later for a neck dissection. They took out 28 more nodes. This surgery was actually worse than the first. My neck was so swollen and sore, I could barely move my head. Luckily all of the nodes from my neck came back clear.
The rest of the summer was pretty uneventful. I healed up from my surgeries and had my first few scans, which were luckily also clear. I signed up for a clinical trial at UW Madison to try and get ahead of my cancer. I was at stage 3 so there weren't many other options available to me. The trial I signed up for was with Keytruda, which is already approved for stage 4 treatment, or standard of care which is Yervoy. I ended up being rolled into standard of care and had my first infusion in August. I went in for my second treatment only to find out that my insurance had denied my claim and I now owe the hospital $275,000. Apparently what had happened was the hospital called the wrong insurance company for my preapproval and the insurance company did not take the time to look up my info. They told the hospital that no approval was needed and the hospital took them for their word.
It took quite a few jumping through hoops, but I finally got the insurance thing sorted out, but then I started to get headaches. I called my oncologist in Madison and visited my local oncologist to try to figure out what was going on. I knew a possible side effect of Yervoy was headaches due to the pituitary gland swelling and I mentioned this to my local oncologist. She didn't think that was the case, but ordered an MRI just to be sure. I had already been having solid headaches for 2 weeks at this point and she didn't schedule the MRI for another 2 weeks. I was not exactly happy about that wait. Then I received a call from my oncologist in Madison and he told me I needed to go to the ER and have that MRI immediately. I took his advise and sure enough, my pituitary gland was swollen and I needed high dose steroids as soon as possible to try to prevent any permanent damage. Too late, I had permanent damage. Say goodbye to my cortisol and thyroid hormones, say hello to a new doctor in my arsenal, my endocrinologist.
Now it's November and time for my next PET scan. This one was not so clear. There was an area of activity that lit up right next to my right ear. I go in for a needle biopsy, and, yup, the cancer is back. My 3rd surgery was scheduled just before Christmas. This was by far the easiest surgery I had. Just a small incision next to my right ear and I was home the same day.
March rolls around and it's time for my next PET scan.....and the same spot lights up again. Apparently there were two infected nodes in that spot and this second one was growing quickly. So quickly it was a large lump by the time they went in to take it out. My 4th surgery was in May and they took out 6 lymph nodes this time. The surgeon was determined to not leave any cancer behind. I had to spend the night for this one. They had a drain coming out of the back of my neck and my head wrapped up tightly to reduce swelling. Out of the 6 nodes, 2 came back positive.
So now I have had a total of 6 positive nodes removed from my head and no treatment options available except radiation. Yeah, I am going to go for it. I can't just sit and do nothing. It's going to be a hell of a process, but I hope it's worth it.
Here are some photos throughout my surgeries and recoveries. The original skin graft looks pretty amazing now.
