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

Saturday, February 25, 2012

My day at the state capital, giving thanks, some notes from vacation, and the longest blog post ever?

How I ended up testifying before the Health Care Policy Committee on February 15th is actually a fairly short story.  The day after governor Moonbeam (Jerry Brown) signed the under 18 ban for tanning beds in California I wondered what was happening in my home state of Missouri.  I called Samantha Guild at AIM and she caught me up on what was going on in Missouri and Kansas.  She was going through all the prior year’s legislation and came across a bill by Representative Gary Cross of Lee’s Summit which happens to be where I live.  I called his office, his legislative assistant game me his home number, and I called him at home and the next morning we were having coffee and bagels at Panera.  Multiple conversations later Representative Cross later he asked me if I would to appear before the committee and testify and I jumped at the chance to do so. 
Representative Gary Cross is a lucky man and I believe he knows it.  He is a cancer survivor but that is not what makes him lucky.  He has a daughter who after years and years of tanning bed use had to have pre cancerous growths removed and he knows how close his family came to having to deal with melanoma.   I believe the dance team his daughter was on in college was actually sponsored by a tanning salon.  I believe this is the reason why he introduced this legislation and why he feels strongly about the issue.   He started out the testimony by introducing the bill and telling the story about his daughter.    He made the point that melanoma rates were climbing among young women and that this legislation was necessary.   His daughters personal Dr. testified next and did a great job.  She told how she tells young women all the time not to use tanning beds.  It was at her recommendation that Rep. Cross daughter visited a dermatologist who found the pre-cancerous growths and removed them.   The portly nervous as hell token melanoma survivor was next.  All I wanted to do was not say anything stupid which I failed at.  It was actually a relief that there were 3 doctors testifying which meant I didn’t have any real reason to talk science or statistics.   I certainly was not an expert at either, even though I think I am.   I tried to keep it between 2 and 3 minutes and I think I went over but am not sure.  I wanted to make a few points.   One that there is a disconnected between what we now know about indoor tanning and its link to increased melanoma rates, and reality in Missouri that allows anybody to tan anywhere at any age however many times they want.   I also wanted to make the point that my daughters at a certain age cannot go to the mall and get their ears pierced without me being there but yet they can go tan as much as they want at pretty much any age.  The last point I wanted to make was that we have to change the perception of what it means to go to the tanning booth.  There are known risk of using tanning beds and we need to make sure parents and teens both know these risk.   This is where the stupid comment comes in.  The whole time I am testifying I am pretty much staring down the chairman of the committee.  Dr. Balaraman had told me that if you go too long the chairman will just cut you off and you are done.  The point I wanted to make in closing is that one person an hour dies from this disease in the USA and that we needed to change the perception of going to the tanning salons.  Our teens today don’t give any more thought of going tanning than they do of going through the drive through at a fast food restaurant.  Well as I am about to make this point I see the Chairman reaching for his microphone and I am sure he is about to cut me off.   I tried to make the point mentioned above but that is apparently not how it came out.  Either that or I was seriously misquoted by the media which unfortunately I doubt.  Seeing yourself quoted in print is odd, even if they keep misspelling my name.  I did a brief TV interview afterwards but have no idea if any of it aired.  The stations were from Jefferson City and Columbia.   After me came Dr. Brundha Balaraman from St. Louis U.  She really had a great presentation and did a fantastic job.  I am going to see if I can get a copy of her presentation.  Her commitment to this issue is amazing.  This is her 5th straight year of testifying before the Missouri House on this issue.  She started when she was a Med student at MU.  If anybody who follows my blog lives in the St. Louis area and needs a dermatologist I would give her a call.   We talked about some of the new treatments available and about my case some.  Next came Dr. Karen Edison, who is among other things is Chair, Dept. of Dermatology at the University Of Missouri.  She really brought home some of the statistics of this disease and offered the one light moment of the day.  After all this testimony on the dangers and risk of melanoma she reminded the committee members that the MU school of Dermatology will be doing free skin exams at a future date for all the house members who were interested.  There was a nervous chuckle from the committee members at that point.  Dr. Edison was the nicest person.  We talked a lot about my case and she really wanted to know.   Sometimes people, even doctors, will ask but you can tell they are only being polite and don’t really want all the details.  We talked about some additional treatment options that may be available for me and my desire to never go through anything like Interferon again.  I e-mailed her yesterday and she got right back to me.  I know a department chair at a major US University and medical school has better things to do.  Nobody testified against the bill and I believe yesterday the bill passed out of committee and will be sent to the house floor.  
I strongly encourage people to get involved in this issue in their home states.   Two different representatives came up to me after the hearing and thanked me for coming and Representative Cross told me that it really makes a difference when people like me testify.  They see experts and lobbyist all day long.  Testimony from a normal Missouri resident catches their attention.  To be honest I feel a little selfish after testifying.  I got way more out of this than I gave.  There were a lot of brilliant and passionate medical minds there.  They didn’t need me.   Your first call should be to Samantha Guild at AIM if you want to get involved.   She was so helpful and helped me put my thoughts together of what I wanted to say and also prepared me for how the hearings usually go. 

 Thank You Rev. Carol
I also wanted to thank fellow warrior and blogger Carol Taylor, or as I like to call her Rev. Carol.  Maybe this comes across in my blog or not I am not sure but I am an extremely private and introverted person.  I don’t like attention and fear public speaking the way Sampson fears scissors.  It’s very uncomfortable for me to do.  I prefer to live in the background.  I was looking for any excuse to get out of doing this.  I was going to have to change my vacation plans which were going to cost me a day with my daughter in Colorado as well as hundreds of dollars in change fees.  Then I read Rev. Carols post titled Come Over To The Dark Side Of Melanoma, see link below. 
As I told Rev. Carol in an email earlier her timing on this was perfect.  After reading her post I was reminded why I wanted to do this.  If had the chance to have some minuscule part of preventing just one family from going through the hell of this disease I needed to do it.  No amount of personal discomfort or a few hundred $ in change fees was a good enough excuse not to do this.   I called my youngest daughter and she understood why I was going to have to put off seeing her a few days.   Thanks again Rev. Carol.  It was with a tremendous amount of anxiety that I logged in last night to get the results of your day at the oncologist.   I was so relieved to hear the great news that you had indeed given up Cancer for lent.  

Serenity Is What We Get When We Stop Hoping For A Better Past.
I shot that picture on my first day of vacation.  It was kind of odd.  I left Kansas City at 6:00 am and by 10:00 am I was staning at the botton of lift 2 and ready to snap my boots into my ski and head up the mountin for the first time in four years.  This is one of those things that I had dreamed of doing while I was doing interferon.  That first ride up was a long lift and it took about 15 minutes.  I savored every second of the experience.  The sound of my boots snapping into my skis, the whirling sound the lift makes on the way up, the breathtaking scenery of the mountains.  To be honest I got emotional.  There were days I didn’t know if I would ever do stuff like this again.  200 yards into my first run I was picking snow out of my teeth and looking for my glasses in the snow after committing the cardinal sin for skiers, I crossed my tips while trying to remember how to turn.   The next day Rich made the trip up the mountain and I got to check buy Rich a beer off of my list of things to do.  I really should have had the bartender take a picture.  Oh well, we can get a group one on Charlotte in November. The first round of Kamikazes is on me. It was great to meet Rich and we had  good visit over lunch and a cold one.   

That is my youngest daughter playing the piano in old town Fort Collins.  It’s funny the things I miss about each of my children now that they are grown and gone. I miss the deep discussions I had with my son, I miss the energy my middle daughter always has, and I miss hearing my youngest playing the piano.  I am still waiting for this empty nest thing to grow on me.  The city of Fort Collins has this program where they spread pianos out across the city and people can stop and play them if they want.  I got Sara to play a little but when people started coming around she stopped.  Unfortunately she has her dads introverted nature.  I spent 5 days in Fort Collins just hanging out.   I read a lot, spent a lot of time with my daughter, spent a lot of time in Old Town, and even stepped into the time machine and visited Boulder for a day.  I swear I saw Abbie Hoffman there.  My first real vacation since August 2010 was a huge success.  Back to work and the real world on Monday. 
But not before spending my day today at Phog Allen Fieldhouse watching my mighty Jayhawks hammer the Missouri tigers and claim our 8th straight conference championship.  I am so excited for the game today.  I get to watch a great game and hang out with my godson.  Wow, this may be the longest blog post ever.