Tanning Bed Use By Minors In Missouri

Melanoma rates among our young people are increasing dramatically. Dermatologist will tell you that 15 years ago it was very unusual to see somebody in their mid 20’s with melanoma. Today it is unfortunately common. There is a substantial amount of research that points to increased tanning bed usage as a factor in this increase. People like me who have battled this disease see this as an opportunity to save families from this nightmare. I strongly support banning tanning beds for minors nationwide. Unfortunately getting anything done on the national level is unlikely so we have to take a grassroots approach to this effort. Later I will be posting some information for people who want to read more about this subject but not this evening. Instead I have a favor to ask. I figure there are three groups of people who read my blog. Fellow warriors, friends and family, and people who like a good train wreck. I don’t really care which group you fit in to I ask a couple of favors of you. 

There is a bit of activity in the Missouri House Of Representatives currently around the issue of tanning beds and their use by minors.  There have been three bills introduced this session.  I have tried to summarize them below. 

The first one (HB1283) was introduced by Rep. Jay Barnes who I believe is from the Jefferson City area.   His bill has been co-sponsored by Rep. Gary Cross from Lee’s Summit.  This bill is a ban by anybody under the age of 15 from using tanning beds.  I love that this bill is a ban but not crazy about the age or the fact that it doesn’t speak to anybody between the age of 15 and 18.   Here is a link to the bill. 

http://www.house.mo.gov/billtracking/bills121/billpdf/intro/HB1283I.PDF

The second bill that has been introduced by Rep. Dwight Scharnhorst who is from one of the suburbs of St. Louis I believe.   His bill is a ban for anybody under 16 and requires parental consent between 15 and 18 years of age.  Again, I wish this was a ban for anybody under 18 but unfortunately it is not.  Here is a link to his bill. 

http://www.house.mo.gov/billtracking/bills121/biltxt/intro/HB1343I.htm

The third bill was introduced by Representative Gary Cross of Lee's Summit.  I have spoken to him several times over the last few months and he met me for breakfast one morning this winter.  He is also a cancer survivor and has a pretty good reason for introducing this bill.  We both agree that we need to take any opportunity to prevent anybody else from ever hearing that they have cancer.  His bill however is not a ban for under 18 but  a parental consent for anybody under 18 with no ban.  Here is a link to his bill.  I haven't spoken to him since this bill was introduced but I imagine he still feels that an under 18 ban has 0 chance of passing. 

http://www.house.mo.gov/billtracking/bills121/billpdf/intro/HB1475I.PDF

What I would like to ask from my fellow Missouri residents it that you reach out to these gentleman and let them know your thoughts on this issue and that a full ban for anybody under 18 should be our goal.  I don’t like the parental consent bills.  However a bill that bans under 16 and requires parental consent between 16 and 18 is better than nothing which is what Missouri currently has.  Remember that your average state Rep. knows about as much about melanoma as most of us did before getting to know this disease personally.  It is a teaching opportunity for us.   The second thing I would like to ask is for you to call or e-mail your own state rep and let them know how important this issue is to you.  So far what I am hearing is that nobody believes an under 18 ban has a chance to pass.  We have to make a statement that we can and will support any effort to ban tanning beds for minors.  We also need let them know we are watching this issue closely.  The Indoor Tanning Association is of course opposed to legislation like this.  It will take numbers and passion to get this done.  My hope is that if they hear from enough of us that someone will be willing to introduce an under 18 ban.  For my friends in the St. Louis area support from that side of the state in crucial.  Nothing gets done in Missouri without support from St. Louis.  Below is the contact information for the people who introduced or co-sponsored these bills.  Take a few minutes out of your day and drop them an e-mail or a quick phone call.   The need to hear from us. 

Representative Dwight Scharnhorst
Legislative Assistant:
Aaron Smith
Phone:
573-751-4392
E-Mail:
Dwight.Scharnhorst@house.mo.gov

Representative Jay Barnes
Legislative Assistant:
Amanda Littlefield
Phone:
573-751-2412
E-Mail:
Jay.Barnes@house.mo.gov

Representative Gary L. Cross
Legislative Assistant:
Jacqueline Geary
Phone:
573-751-1459
E-Mail:
Gary.Cross@house.mo.gov

Last but not least is a link to the legislator look up web site.  You enter your 9 digit zip code and it tells you who represents your district.  Perhaps you know already but to be honest I had to look mine up. 

http://www.senate.mo.gov/llookup/leg_lookup.aspx

Happy New Year. Looking forward to 2012.

I know this is a little late but I have been thinking of what I would like to do this year.   From the looks of this list it’s going to be a busy year.  I am not big on bucket lists or New Year resolutions but there are definitely some things I would like to do this year. 

·         Spoil my granddaughter.   My granddaughter Taylor is amazing.  She will be 5 in April which is so hard to believe.  I really look forward to spending a lot of time with her this next year.  Watching Taylor grow is just confirmation of what a wonderful mother my daughter is and how blessed I am. 

·         Be a better father, son, brother, uncle, nephew, cousin, and friend.   I don’t know what else to add but to say my commitment to the above statement is solid.  I appreciate all the people in my life and I hope that they know it.  I really have leaned on a lot of people this last year and am very grateful.   

·         Run in a 5K with my daughter Jenny.  Believe it or not I was once a runner and ever since I watched her run her first marathon I have wanted to run a race with her. 

·         Visit my daughter Sara in Colorado as often as I can.  I still can’t believe my baby is now a freshman in college.

·         Visit my son in Alaska.  I am really looking forward to this trip.  All those frequent flier miles will come in handy.

·         Work with my fellow melanoma warriors to make this coming May the loudest Melanoma Awareness month ever.  Friends we have some work to do. 

·         Have a beer with Rich on one of my trips to Colorado.  Rich is the author of one of my favorite blogs ( http://hotelmelanoma.blogspot.com ) and is a fellow Dylan fan.   I have gotten a ton of entertainment from his blog during a very difficult year and think I owe him a cold one.

·         See multiple Royals, Chiefs, and Jayhawks games this year.  I haven’t seen a Royals or Chiefs game in two years and only two Jayhawk sporting events.  Todd I swear we will catch a Royals game this summer. 

·         Be a regular at BB’s, Jardines if they open again, Knuckleheads, and The Blue Room this year.  Great spots for live music.

·         Start dating again.  Somebody who enjoys the above activities would be nice.  All kidding aside this is very complicated now.                           

·         Enjoy the great outdoors

·         I have spent so much of the last two years afraid of the sun.  I miss being outside and feeling the sun on my face.  Just have to be much smarter about it now than I was.    A hat, sunscreen, UV protective clothing…..  No need to hide, just have to be smart.

·         Put 2,000 miles on my bike this summer.  Would love to do RAGBRAI (http://ragbrai.com/) but it’s probably not possible due to other summer plans.

·         Take a dip in Baker Lake in New Brunswick, CA.  I would love to visit with my Uncle Bobby and his wife Collette with my mom this summer.  Great people I don’t get to see nearly enough. 

·         I will not complain about my post interferon curly hair.  I thought I was going to be bald at one point but my hair came back thicker and with a lot of curl.  I sure wish mullets were still in, I could have an awesome one.

·         Participate in a fundraiser for AIM and LIvestrong.  Both of these organizations were great to me in my hour of need.  I would love to give back however I can.

·         Throw my support behind any effort to ban tanning beds for minors in my state.  I had a couple of meetings with Representative Gary Cross and I think there will be more to come on this.  Samantha Guild has been putting me through tanning bed school.  Where I was once just an angry anti tanning bed guy I am not an educated angry anti tanning bed guy.  Seriously if you want to find out what is going on in your state or get involved in starting something she should be your first call.

What I want to do this year more than anything else is just live my life and enjoy every day.  On December 30^th after a 14 hour day at the office I came home and saw on a fellow bloggers Facebook page that a fellow warrior and blogger Randis (http://randisohnomelanoma.blogspot.com/) journey had come to an end and she had been called home to meet her maker.  I was shocked and saddened by this news.  I did not know Randi well, we followed each other’s blogs and sent each other a few messages but I felt like somebody had just punched me in the gut when I read the news.  To be honest it scared the hell out of me.   Her experience is my nightmare.  Cancer free for over 5 years before it returned this April and she was gone before the end of December.  Unfortunately that is not an unusual story.  As I lay in bed that evening I was thinking of her family and how they must be feeling and fearing it would be my family some day.  The more I thought about it the more I realized that my fate is in my hands only to a certain extent.  If I live 100 more years or 1 more year I just want to be able to look back to this point in time and not have any regrets.   None of us know when our journey will come to an end.  I am not ready to go and cash in the 401K and quit my job but I do want to enjoy life more than I have these last couple of years.  I expect to be here for many years but none of us know for sure.  For those of you who are still reading this long post I say thank you.  Sometimes I blog to tell people how I am doing or to try and educate or inform people on an issue, other times I blog to just get something off my chest.  This is one of those posts I guess.  Happy New Year and let’s have a toast to a year with no regrets

Paul

Late Christmas Gift

No my late gift was not the bottle of scotch.  I had to buy that for myself.  Today I got the results of my latest PET scan which was done on the 23^rd and it was great news.  100% normal and NED.  You prepare yourself for whatever news may come and I was prepared for whatever but was of course hoping for good news.  My oncologist was very pleased and said he didn’t want to see me again for 6 months.  That seems like forever considering last January I was seeing him 5 days a week while getting Interferon treatments.  My blood work looked good and all my levels have all returned to normal.    My life is slowing coming back to me I think.  As of February 1^st my time on the project I am working on is up and I will be off the road and back to my old job.  It will be a big adjustment to not be traveling anymore.  As much as I complained about it I think I will miss the excitement and challenge of being on the project.  That and being able to visit NYC.  I also will really miss my new friends that I have met these last two years.  The bad news from the visit today came when I stepped on the scale.  If I was playing strong safety for the Chiefs I would be about the correct weight.  Unfortunately I am not so I have some work to do. 

Well I am going to go crack the seal on the Macallans and enjoy a cocktail.  I don’t know that I will ever consider myself a cancer survivor or not.  I currently cringe at that title for some reason.  I always just think of myself as a guy somewhere between my last clean scan and my next unknown one.  Today I got six more months of peace and I will take it.  Thanks again to my  family for their unconditional love and support.  I love giving you guys good news and really appreciated all the e-mails and text messages today. 

Paul

Thanksgiving Thoughts

To say I have a lot to be thankful for this year is a huge understatement.  A year ago I really felt like my life was spinning out of control and to be honest I wasn’t sure I was even going to be around to see this Thanksgiving.    I had just received the results from my SNL biopsy and it was positive for melanoma in my lymph nodes and this was just worse news on top of bad news.  Heck a year ago my family didn’t even know of my diagnosis yet.  I spent last Thanksgiving with my then girlfriend and her family.  It was a nice thanksgiving and they were all very welcoming to me for the holiday but there was so much going on it was hard to enjoy it.  I didn’t know it at the time of course but that was actually the last bad news I would receive from a biopsy.  I have had two more surgeries since then, multiple spots carved of me by my dermatologist, and two additional PET scans.   All have been no evidence of disease or NED as we say.  Being a stage 3 melanoma patient isn’t the most desirable of positions to be in, but it beats the hell out of being a stage 4 melanoma patient.   Toss in my time on Interferon and it’s been quite the journey.  I can’t help but feel like I have had my dance with the devil and lived to tell about it.  What I am most thankful for this last year is my family, especially my children.  Their support has been the difference for me this last year and I can’t imagine going though this without their unconditional love and support.  My granddaughter is too young to understand but her mere existence motivates me.  My mom and dad, brother, and sisters have been incredible.  I received support from aunts and uncles, cousins, and nieces and nephews.  I am truly a blessed man.   I also am very thankful for a new appreciation of what it means to beat cancer.  Before I was diagnosed it was black and white, if you lived you beat cancer, if you died you “lost” you battle with cancer.   I can tell you now I see this very differently today.  Nobody who fights this disease before getting called home by our maker is a loser.  If there is a loser in this equation it is us.  We lose friends; family members lose loved ones but for those whose journey in this realm comes to an end they have beaten cancer.  They have inspired us with their courage and teach us what it means to fight.  In their names and memories we help raise funds for research, do what we can to raise awareness, and become advocates for our fellow warriors.    I was surprised to hear from so many strangers during this last year.  My angel Tim offered encouragement, Dianne walked me though interferon treatments, Rich entertained me with this blog, Al pays tribute to his brother so eloquently, and Chelsea writes like I wish I could.  They share their stories about their own journey with this disease and offer encouragement and support to others.  Keep fighting like hell my friends, is there any other way?   For those of us still here we beat cancer every day by just rolling out of the sack and putting our feet on the floor.  Right after I started my interferon treatments a fellow warrior in the chemo suite told me that I didn’t realize it yet but we were the lucky ones.  I wanted to punch him, I didn’t feel lucky.  Then later Lance Armstrong told a story in his book about somebody telling him the same thing and he had the same reaction as me.  But now, a year into the journey I am beginning to see what he meant.  Obviously I am lucky to still be alive but it’s deeper than that.  I am lucky for my new outlook on life.  I appreciate everything a little more.  Things that once caused me stress just don’t anymore.  I hope that never changes.  I continue to slowly feel a little better.  The fatigue that dogged me all summer and fall seems to have subsided.  The memory loss and other side effects from chemo seem to be getting much better and fortunately/unfortunately I have gained back all the weight I lost while on interferon.   Life is good. 

Paul

Great News

This has been such a great weekend.  First off my mom had her knee replacement surgery on Friday and is doing wonderfully.  She was back on her feet within 24 hours and with the help of a walker moving again.  I just talked to her earlier tonight and she sounded great.  My prediction is that she is back shopping within 8 weeks.  It was really hard to watch her struggle these last few years as her knee deteriorated but it will be great to see her bounce back.   My sister Michelle was there and stayed with her and kept me up to date via text all weekend.  As I am sure many of you know it is so hard to be away from family when stuff like this is going on.  She goes home tomorrow and mom and dad both sound excited for that.   My mom has always been one of my biggest supporters even before I was diagnosed.  Her will and determination this weekend has been inspiring.   If I ever get back home again I hope to go and see her.  Unfortunately as it looks now it may be the week of Thanksgiving before I am home for any significant amount of time. 

I haven’t been feeling very good lately and Dr. D confirms its still side effects from the chemo I was on which is hard to believe.  It’s been nearly six months since I took my last treatment but sometimes I have these stretches where I just feel like crud.  Mostly just fatigue but also get the body aches and some of the other side effects I had during treatment.  I still have to remind myself that others would love to have my problems.  I have been very lucky.   I ventured out into Montreal some these last two days but not as much as I would have liked.  It is such a beautiful city and there is so much to see and do.   I visited the most beautiful church today.  It was in Old Montreal and I forget the name but it was the church where the sailors would go before heading out.  Again, there is so much to see and do here.  I am holding out hope that I can get to a Canadians hockey game this week but tickets are so dang expensive. 

Some common themes  you will hear from melanoma patients is that they want more than anything to beat this disease, see more money spent on research and a cure, and to prevent others and their families from going through the hell of this disease.  Today was a huge victory for people who have this disease and who have lost loved ones to melanoma.  California governor Jerry Brown today signed legislation that makes it illegal for anyone under the age of 18 to use tanning beds.  They are the first state to pass such legislation and I am sure not the last.   My hope is that this move by him will create such a controversy that there will be hours and hours of coverage by all the major news channels.  Unlikely I know, but I can still hope can’t I?  If tanning beds caused breast cancer they would have been outlawed years ago.   A year or so ago I had the luxury of either ignoring this news or going off on some rant about the government taking away our rights or sticking their nose in where they don’t belong.  I no longer have that luxury.  Instead I have a hole where my armpit use to be and a scar that goes from my shoulder blade to my neck and the lovely side effects from months of chemotherapy.  What a difference a year makes.      Today was a small victory, but victories are few and far between in the world of melanoma.  I now find myself in the position of having pen a thank you letter to Governor Jerry Brown and for those of you who know me this will be painful but I am glad to do it.  As I tell people all the time if you want to use tanning beds I have no issue with you.  No more than when I walk past the smoking area at work.  I chain smoked for many years, it would be hypocritical of me to pass judgment on them now.  What I do strongly suggest you do however is educate yourself about the dangers of tanning beds in particular and sun exposure in general.  Don’t be intellectually lazy and just assume it’s going to be ok.  We all know people who have smoked for 30 or 40 years and they don’t get cancer.  We also all know people who worship the sun and go to the tanning bed many times a week and don’t get cancer.  That doesn’t make the risk to you or your loved ones any less.  There are also people who never smoke and get lung cancer, and there are people who get cancerous moles in places that have never been exposed to the sun.   Make an informed decision.  If you have teenage daughters I especially encourage you to spend just a half hour reading about the dangers of tanning beds.  Melanoma rates amount young women are growing at a near epidemic rate and the scientific research is pretty clear that links increased tanning bed use to this increase.  Also, I became aware from one of my fellow bloggers and warriors Chelsea that some sororities are actually requiring members to use tanning beds a certain amount of hours per week to keep up their tan and the houses image.   Disgusting on many levels I know but for people like me who have a daughter in college and in a sorority its something else to ask about. 

As I was thinking of what video to post with this entry into my blog I came across the beautiful version of Halleluiah by K D Lang.  Since this is my first blog entry from Canada it seems appropriate.  I think KD Lang is so talented and much underappreciated in the states. 

So Long R.E.M. And Looking Back

It was a year ago today that I got the call telling me that I had cancer.   It was a really off day for me today and I am not sure why.  My memories of that day are very vivid and I can still hear the concern in Dr. Gs voice as he was telling me the results of my lab test.   I wasn’t planning on entering a post in the blog today but when I heard the news that REM was calling it quits this song came to mind and I began to remember how calming my sister was to me that day.  I was a mess when I called her and she talked me off the ledge as they say.  It is my most vivid memory of that day.  This was always one of those songs that has always brought me happiness and sadness at the same time.  REM was such a great band.  I still remember the first time I heard Murmur on KJHK in 83.  So sorry I never saw them in concert.  This song sums up how my year has been.  I have been so lucky and I won’t even start thanking people for fear that I will leave somebody out.  After a run of bad test/scan results last September/October, five surgeries on or around my left arm and shoulder, and nearly five months on interferon, I have been cancer free since last November.  Something I wouldn’t have bet on a year ago.  I also wanted to mention to people who support the KU Cancer center that today their application for NCI designation was sent out.  This is a huge day for cancer patients not just in Kansas City but the whole Midwest.  Some day we won’t have to travel to places like Houston or New York to receive the latest trials and treatments. 

Ok, one more video.   Eddie Vedder wrote the words to this song while sitting on his surf board in San Diego at the age of 18.  The first and third verses are true stories about his own life .  The middle verse is, well creepy I guess best describes it.  He told the story on MTV story Tellers one night how he always thought of this song as a curse or burden of some sort.  Writing it did little to help him come to terms with these events in his own life.  As this song got popular and they began to play it in concert he said people would come up to him after a show and tell him how much this song meant to them.  They told him stories of overcoming tragedy and that they felt lucky to be alive although they had no idea why they had survived.  Military vets, columbine students,, on and on people would tell him their stories.  It was then he realized why he wrote this song and that he began to find peace in his own life and come to terms with what had happened to him.  By relieving other people burdens he was able to relieve his own.  In that spirit I want to recognize my two favorite bloggers.   Rich who pens the blog http://hotelmelanoma.blogspot.com/.  Rich you always have the best takes on events and great taste in music.  Your blog has given me some much needed humor this last year.  Chelsea who pens http://adventurewithmelanoma.blogspot.com/ .  Chelsea you might be the bravest person I kind of know.  You two, MG and Tina are the biggest reasons I started my blog, and probably the reason why I will give this thing up some day.  I consider you both friends and partners in this battle.   Many clear scans ahead for us all.  This video is in HD and can take some time to load but it is worth it.  The guitar solo at the end is one of my favorites and in my opinion one of the more underrated solos in rock. 

Paul

is something wrong she said
of course there is
you're still alive she said
do i deserve to be
is that the question
and if so,...if so...
who answers?
who answers?

Well once again my blog is suffering from neglect.   Let’s get the dreaded medical update out of the way first.  My surgery August 22nd went well and I had two of my favorite ladies taking care of me for the day.  My older daughter drove me home after I was awake enough to get into her car and on the way home we picked up my granddaughter at daycare and they came and spent the rest of the day with me.  Some pain but nothing that a few percocets couldn’t handle.  Jenny took good care of me and Taylor kept me entertained.  Just over a week later I was in a cab in Montreal when my phone rang and I saw it was my surgeon and as expected the mass I had removed showed no signs of cancer.  Even though I was expecting this news it still feels great to hear it officially.   The rehab from the surgery is going well and I am nearly back to where I was before the surgery.  I also had my 90 day check up with my oncologist this week and it was very uneventful.  Everything looks good and he was as happy with my lab results as I was.  I was hoping that this would be the trip where I walk into his office and the receptionist didn’t recognize me but no luck, she still knows who I am.  Maybe next time.  It may sound odd to most of you but it will be so nice when I walk in there and it has been so long that they forget who I am.   I got the flyer that I posted above from his office.  It made me stop and think about what cancer cannot do to me instead of what it has done to me. Attitude really is everything.  It also made me think of my former classmate who lost her sister to leukemia last month.  Once again I really really hate this disease. 

The Sunday after surgery I headed out to Colorado to check in on my daughter at CSU.  A quick funny story and I am about to show my age I suppose.  I knew it was a co-ed dorm but assumed that it was like dorms were when I was in school where opposite sex member were not allowed on each other’s floors for the most part.  Well apparently sometime during the last 30 years this has changed and the floors are actually co-ed.   Two rooms of girls who share a bathroom, then two rooms of boys who share a bathroom.   I asked Sara what time I was allowed on the floor so I could come and see her room and she gave me this confused look and I now know why.  Anyway, she is doing well at school and I think this adjustment is harder for me than it is for her.  So far this empty nest thing is overrated; maybe it will grow on me.  I had a great visit with her and we did escape for an afternoon in the mountains.   On my last evening there we had dinner with some old neighbors from when we lived in Colorado and a daughter of one of my cousins who now lives in Fort Collins.  It was a great evening and both Bob and Sandy and my cousin Sarah made themselves available to my Sara which meant a lot to me.  I feel better knowing that she can call some of our old friends or a family member if she ever needs something.  It gives a nervous dad peace of mind.  She joined a sorority this week and is pretty excited about that.  Not sure how I feel about it but she was quick to point out that they have the highest GPA on campus which she knows will calm my fears.  I am trying to not remember my freshman year and the things I did.  Surely she has better judgment than I.  I am really looking forward to next weekend when I am headed to Atlanta to see my brother and his family.  It has been way to long since I have seen them. 

It’s hard to believe but I am coming up on my one year anniversary of being diagnosed with cancer.  It seems like I have been in the battle for 10 years.  I think the best analogy I have heard so far is that it’s like trying to jump back on a merry go round.  The world keeps spinning even for us cancer patients and at some point we have to jump back on.  Right now it still seems to be spinning too fast but I am getting closer to jumping on I think. 

Once again thanks to all my family and friends for their support during this last surgery.  I don’t know how I would get through this without you.

Paul