As the title says this blog is one man’s effort to make sense out of his journey fighting melanoma. I have enjoyed reading some of my fellow melanoma warriors’ blogs and thought it might be an interesting way to share what this journey has been like for me. If you find this interesting great, if not that’s great also. Selfishly this is more about me getting this out and moving on from being a cancer patient to being a cancer survivor.

Let’s clear up a few things. Yes, I know how to use spell check and no I don’t always use it. I majored in accounting, not english. I have always been a below average writer, which is why I find the therapeutic value of doing this surprising. I think for this blog to make any sense you pretty much have to go to the archive and start from the beginning which is titled “Life Is Good”

I am not a doctor or medial professional of any type. My blog is not endorsed by any medical professional or facility mentioned in it. Every decision I have made about my care was done after careful consultation with my medical team. Decisions I have made were right for me but should not in any instance be considered right for anybody else. I don't recommend taking medical advice from an accountant.

Key West

Key West

Monday, May 9, 2011

A Huge Thank You and What Is Next?

First off I really want to thank my brother in law Chris.  He is going to show the Dear 16 Year Old Me video to his high school health sciences class before school lets out.  Other than beating this disease personally what I want more than anything is to prevent somebody else from getting it.  Getting that video shown to as many people as we can is a step in that direction.  Thank you again Chris. 
I have received a lot of feedback from people about my blog.  I want to thank everybody who wrote on my facebook wall, commented on the blog, and e-mailed me directly.  I was really surprised by the emotional reaction some people had.  I guess since I lived it I didn’t have that reaction as I was writing it.  I appreciate the comments and messages.  It means the world to me to hear people have read my blog and learned something about melanoma that they didn’t know.  The intent is not to make anybody cry or draw attention to myself.  I do it selfishly because it makes me feel better for some reason and I feel a responsibility to try and prevent other people from having to go through this.  The worse side effect I still have is a pretty bad case of “Chemo Brain” but think in time I will recover.  Chemo brain is basically loss of short term memory, lack of ability to multi task, stuff like that.  Some of it will never go away; some of it will hang on for 5 years.  My hope is that since I was on Interferon which is a protein that I will recover 100%.   
The most common question I received was what is next for me?  Well, to be honest I am not sure.  I won’t see my oncologist for another two weeks but to the best of my knowledge at this point the plan is this.  I will continue getting PET scans every six months for the next year and a half.  This is the most important test I do, if melanoma has spread internally this is the test that will show it.  This test and ones like it have caused a new word to be created.  Scaniety and its very real.  My next PET scan is Thursday morning.  I will get more radioactive crap in my veins, an hour sitting in the dark because I am too radioactive to be around healthy people, and another slow trip through the tube of strange noises.  Scaniety to me is the fear of the results of your scan, and the anxiety you feel leading up to and after your scan.   I usually get my results in a few days and I will be a nervous wreck.  When my cell phone rings and I see Dr. D on the caller id I will feel like getting sick.  Last night I didn’t sleep thinking about the scan.  My hope is that I am so tired tonight that I sleep better.  I will take whatever news comes my way and we will keep moving forward.  Just as important as the PET scan are my visits with the dermatologist.  I see Dr. Allen every 90 days, it was every 60.  He really is the first line of defense and if I have any questionable spots he removes them.  So far he has taken 4 or 5 questionable spots off of me and they have all been negative for melanoma so we are off to a good start.  I don’t think I have mentioned him before but he has also been a great resource for me.  He spends a large amount of time on all my visits to his office teaching me about what looks good and what looks bad.  I plan to see my oncologist the first week of June and see if any of these schedules will change but I don’t think they will.  I also hope to talk to him about what if anything I should do next.  My guess is as long as the PET scan is clear the answer is nothing.  I am officially in “Observation Mode”
Again, I feel great.  My son is in town from Alaska and he and I had a great time Saturday riding bikes.  He is the reason I am on a bike, he gave me one of his hand me downs about 5 years ago.  Riding my bike is very relaxing to me, even if it is 1/3 of the distance I was riding last year at this time.  My legs felt good, my lungs hurt like heck.  My older daughter started a new job today and she reports it went well.  I am so proud of her.  We had dinner on Saturday night, I grilled salmon and asparagus, two of her favorites.  My baby is graduating from high school this week.  Hard to believe.  Where did the time go.  We got the date she moves to Fort Collins, CO last night.  On August 17th she is due at her new dorm at CSU.  I am very happy that she is going to get to go out there for college.  She was born about 10 miles from where she will be living again.   I guess the world is round.  That is me and her mom in the picture at the top of the post.