The history of my current event….
After some talking with a friend who blogs regularly, I decided to restart my blog and chronicle my current situation. There were two compelling reasons for this: First, it’s therapeutic and second it provides me the opportunity to tell my story, from my perspective, in my own words, and it’ll be saved. So here it goes.
I have metastatic melanoma, and I’ll explain the roller coaster of the last month and a half, in this post. The law is long and complicated so, I’ll outline the legal stuff in a separate post. The short of it is that melanoma is classified as an occupational disease for firefighters, according to Colorado state law.
The roller coaster-
The wait line
Back in July, I had my regular annual physical, by my personal physician. Durning this visit, I asked my Dr. to remove a pesky mole from my right calf. This mole had been there for about 2 to 3 years and had been looked at by multiple Dr’s over the years. It never fit any of the atypical mole warning signs and it was never a concern. However, the months leading up to the physical the mole started to be problematic. I kept tearing it open when taking off my bunker pants at work. The repeated actions started to make the mole change in appearance, enough to make my chiropractor and acupuncturist comment on it. I asked my Dr to remove it. She agreed with my thinking at the time, that the changes looked like necrotic tissue. It was removed and sent off for pathology. The end of the line, now time to get on the ride.
The roller coaster takes off -
A week later, my Dr. called and left me a message. I realized very quickly that something was different about this ride because, my Dr. never calls me with information, it’s always her nurse. When I called her back, I asked if it was melanoma. She asked how I knew and I told her that I just connected the dots about her calling.
The up hill climb-
My Dr. referred me to the melanoma clinic at University hospital. While I waited for the appointment to come around, I decided to read the pathology report and try to decipher it. I was able to figure out that I had a stage II melanoma, but I was unable to realize the fine details. When I met with the cutaneous oncologist, he informed me my melanoma was in a atypical spot for males and there were some serious findings on the pathology report. Further follow up was warranted, and I correctly staged my cancer. Dr. Gonzales was worried about the mitosis rate and the active regression the tumor showed. The mitosis rate was indicative that the tumor had a higher chance of metastasis and the regression rate made it hard to accurately size the tumor.
The ride-
The best course of action was to go in for surgery, remove a much larger area of tissue from the tumor site, and do a sentinel node biopsy. The sentinel node biopsy involves injecting the tumor site with radioactive iodine and tracing it to a specific lymph node in the groin. The node is removed along with a little extra skin. The extra skin from the groin is used to graph the large area of tissue removal in my calf. The calf area now sports an ice cream scoop sized divot, which I have now nicknamed Hermes the hole.
The big hill climb-
About a week after the surgery, the nurse called and informed me the lymph node was clear. I was very excited and stupid all at the same time- I asked for the pathology report again- idiot!!! I read the report and saw that the node was clear, but I also saw that I had a satellite tumor in the same area as the original tumor. This constitutes changing my stage to late stage III. Crap. So I decide that I’m just a minor league player in pathology report reading, and I’ll wait for the follow up appointment with the surgeon. (Dip in the hill climb). The surgeon said I misread the report, everything was fine. I was elated and we toasted champagne that night and took a deep breath. You know the one before the big downhill drop…..
The drop-
The next day I met with Dr. Gonzales, the oncologist, as a follow up to the surgery. (This is where I found out I can read a pathology report better than my surgeon and the 5th year med student). It took 2 doctors to inform me that I am “seriously” ill. What???? How can I be so seriously ill, but not feel it? We started to discuss my treatment options, which are limited since melanoma does not respond to chemo or radiation. So this is where we are in our journey/ride…for now.
Very well written…..and appropriate mountain imagery in the background. Glad your on the blog.
You may think I am a crazy person, because you have no idea who I am. I have been very fortunate to be friends with Oren and Ahna Bersagel-Briese. Ahna was an amazing 4th grade teacher to my daughter and then I was very priveleged to watch Ezra until May of this year. I saw the link to your blog on their blog, read your story and am sitting here crying. First off, I think firefighters must have an incredible gift for writing. Keep writing–you never know how your journey will encourage, guide, and comfort someone else. I will keep you in my thoughts and prayers as you tackle this horrific disease.
Peggy Jackson
Thanks and I’ll try to keep up
I’m not nearly as gifted as Oren though
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Wow, I read your posting and feel for you. I was in the same situation about 4 years ago. I too found something that I asked to get removed. The dermatologist wasn’t worried, had a punch done and removed it. The doctor called me at work and said it was skin cancer, could I come in that day to talk about it. I went in a day later and they told me it was melanoma. To this day it all seems surreal. I went through the same course of action at the U, had the lymph nodes removed to test, took a larger sampling of skin, but they didn’t find anything more. I got a second opinion from another practice and stuck with the U since they really are the “second opinion” docs. Nothing new has been found in 4+ years. Trust your docs, take someone with you to your appointments to make sure you are asking ALL of the questions – big or little, just ask. Keep posting, you’ll find more folks that have gone thru the same roller coster ride you are now on. I’ll keep you in my thoughts.
Hey, I’m one of Ahna’s college buddies and got word of you blog from Little Hippie. You’ve clearly done your homework, so may already be aware of the exciting research that is advancing treatment of metastatic melanoma even in the last 12 months. (http://www.mskcc.org/mskcc/html/103532.cfm) . These folks are making the pages of major medical journals (JAMA etc). Several of my Michigan patients have consults with SloanKetterling (NIH in DC also has lots of active metastatic melanoma research trials) with good feedback from them and their families. Good luck!