Image is not available
Image is not available
Image is not available
Image is not available
Arrow
Arrow
Slider

Blog

Where I document my happenings, my life, and my thoughts.

So the type of radiation I am getting is called Tomotherapy. In a lot of ways it is better than traditional radiation because it is a lot more precise. Side effects are lessened and more healthy tissue is left untouched. I did a lot of reading about radiation, as I do with everything, before going in to see what to expect and found that I might need a feeding tube and perhaps have teeth pulled, etc, etc, but my doctor said that I would most likely need none of that. I guess tomotherapy was developed at UW-Madision which makes it the best place to get it me thinks! But on to point, today I had my 9th treatment, and I can say it's going along pretty well. I am starting to get a bit of a sore inside my cheek on the right side, like they said I would, but besides a bit of dulling of my taste buds, I really have nothing to report. They say the side effects don't really start kicking in until after the second week, so I suppose we will see what else will happen. If this is all I have to deal with, besides the drive, bring it on! The lovely Briane joined me for this particular trip as she has a few days off. We spent about 9 days in a car together once and didn't kill each other, so this trip was a piece of cake. We are both on the same level of weirdness. I like that. Here are some pictures from the day.

Me in my mask
All done
Briane on a bea...
Ice cream stop

Write comment (3 Comments)

Birthday fun

Happy birthday to me! Yes, on father's day I turned a year older. I decided to have a big bash this year, and even though not everyone I was hoping would show up, showed up, it was still a good time. My parents own an 80 acre farm, so what better place to hold an event such as this! 

Getting ready for it was a bit stressful, but what party isn't. I had to clean out the quonset (large storage shelter) and set up the tables. I bought some burgers and brats and a whole lot of beer. Oh, and don't forget the port-o-potty. My mom decided to get me a My Little Pony cake and some pony ears. :-D Did I mention I turned 36?

The party didn't really kick off until 7, though a few people stopped by earlier. When 9 rolled around it was time to light the BIG bon fire. My dad had a brush pile just aching to be burned. I swear the flames flew 30 feet high! We were up until 4 am watching that thing burn despite the big storms that rolled through and soaked it down. It really was a great party.  I am really happy people were able to celebrate it with me. 

Radiation 

I had my first radiation treatment on Tuesday. It was pretty easy. The mask they made was sitting waiting for me on the scanning bed. They had me lay down and they snapped it over my face. When I was comfortable and the nurses were happy with my placement, the bed slid into the scanner. After about a minute the scan was done and the bed slid back out again. I laid there for a couple minutes while they reviewed the scan. After they made the adjustments to the lasers, my bed slid back in and the radiation began. It kind of sounded like a guy shaking maracas around my head. I could feel a little bit of tingling on the treatment area, but that was about it. After a few minutes the machine turned off and the bed slid back out and that was the end of my treatment. Today was about the same, but this time I had a little bit of a metalic taste in my mouth.

I have to do this every day so I will keep you posted as symptoms emerge. I want to think of this as a journal to keep track of how I am doing as well as give anybody going through it themselves an idea of what to expect. I know I am always looking for experiences, so it is only fair that I share mine. 

Write comment (0 Comments)

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.

Write comment (1 Comment)

I drove up to Madison today to get fitted for my radiation mask. It was a little disconcerting to say the least. They put this wet plaster mesh over my face and let it dry for about 10 minutes. When they first stretched it over my face, I was almost afraid to breath because of how wet it was, but once they got it on there, it wasn't so bad. Shit's getting real folks. They want me to start radiation on the 20th. That is 5 days a week for 6 weeks I have to drive about 2 hours there, hang out for a half an hour, then drive 2 hours back. I am going to have to load my cell up with some tunes!

 

For those of you who have never seen a radiation mask before, this is what one looks like. It essentially holds your head completely still so they can very accurately shoot the high energy particles at a localised spot exactly the same way every time you step into the office. You can then later use the mask for your super hero rampages.

Write comment (0 Comments)

There is a melanoma forum that I visit daily. Mainly to see how others are doing and to give advise where I can. I am not anywhere nearly as knowledgeable as many of the people who visit, but I do have experiences worth sharing. There are a few people who are in the thick of it that I like to hear updates about. Some are doing well, some are fighting for their lives. There have been a few times this year where people who I was very hopeful for have lost their battle. These are the updates that I find the most difficult to read. Will this eventually be my path as well, or will I have a happy ending? I guess only time will tell. 

 

To Josh: I hope you have finally found peace.

Write comment (1 Comment)

Archives