A Really Boring Update

It's hard to believe that it has been since November that I have posted anything in my blog.   I guess its an indication of two things.  One I am extremely busy these days and two my life is really going well.   This month makes one year cancer free and I am incredibly grateful.   I have had three scans in the last year and all of them have come back clear.   Honestly I feel the best I have felt in a long time and the localized occurrences of melanoma that I couldn't seem to stop last year were finally halted by the radiation treatments.   I can still remember sitting in Dr. Baders office and him telling me with all the confidence in the world that he could help me and he was very confident that radiation would be effective.  I hoped he as right and he was.  I was just thinking that its kind of sad that if all goes well I will never see him again.   I will definitely drop him and his staff a thank you card this month and drop off some bagels or something the next time I am at providence for an appointment. 

Thanks to everybody who has supported me this difficult year.   I couldn't have gotten through this without you.   Unfortunately I also had to say goodbye to a new friend this weekend.  Dan is in the middle of the picture below.   It was our one and only time meeting in person the day that picture was taken but he made an impression on me.   Dan was called home on Easter Sunday and his celebration of life service was this last weekend.   Dan was a great guy and he never gave up and I will always remember his smile and his attitude.  The week before he passed we were texting back and forth about going skiing together next winter after he completed a new trial drug.   Well that day will have to wait .   Rest in peace my friend.  Melanoma is not just skin cancer.   Please pay attention to your skin.  See a dermatologist annually for a skin check and use some common sense while out in the sun.  I spend more time in the sun now than before I was diagnosed with skin cancer but I am much smarter about it now. 

Paul

Moments In Time

I took this picture as soon as we arrived in Homer Alaska as kind of an afterthought.   It was later that evening when I was looking at my first days pictures that I realized what a great picture it was.   That is my son and my older daughter.  Life has taken them away from each other as it often does to people.   I thought I was going to Alaska to catch fish and visit my son.   We did do that but I think more importantly I was able to reunite these two for a few days and for a few days it was like they were 5 and six again.  In hindsight I believe that was the purpose of my trip.  When I saw that picture the first thought that raced through my mind was mission accomplished.   We had a great time and Alaska is so beautiful.   We caught lots of fish and had some good food but nothing can replace that moment. 

3 Years Ago.......

Three years ago this month I was diagnosed with cancer.   Soon there after a well meaning Dr. told me that I most likely had less than 12 months to live.   Well, I solicited Mr. Johnny Cash to help me pass a special message along to him, people who wrote me off for dead, and to cancer itself.   I think that picture pretty much sums up my feelings.

Yesterday I received the news that my latest scans show no evidence of disease, or NED as we like to say.   My latest battle with melanoma started last September when I noticed lumps appearing in the same area I had my primary tumor in 2010.  I had several surgeries but it kept coming back.  In the middle of all of this I had the idea to move across the country to Washington State.   Soon after moving I noticed another lump and went to see my new oncologist.  By the time I saw him one lump had become three and he sent me to a new surgeon.  By time I could get in to see him three lumps had become seven.  My surgeon told me that it was spreading so fast that surgery by itself was futile.  There was only so much they could cut out of me.   So off to see the radiation oncologist and soon after surgery I started radiation treatments.   My old oncologist was anti radiation so if I had never moved here I would most likely never have received this treatment.   Time will tell but for now at least this has been successful in stopping the spread of melanoma.  

 My summer got off to a rough start with radiation treatments in May and dealing with the aftermath of that for much of May and part of June.   It wasn't much fun but I know people who are going down much rougher roads than I so I wont complain.    By late June I was pretty much healed up from the burns and getting back to normal.   The fatigue hung on a little longer but all and all it was fairly manageable for the most part.  

I continue to settle into my new home here in Washington State and loving the weather.  Summers here are spectacular and I have been enjoying the great outdoors as much as possible.   Between recovering from the radiation treatments and a knee injury I have been slowed some but I have stayed as active as possible.   There are an endless numbers of great hikes to do here, camping galore, kayaking, ....  If you can't tell I love living here.   This summer my daughters and grand daughter came out to visit which was by far the highlight of my summer.  I didn't get to spend as much time with them as I wanted but I enjoyed the time we had.  My parents are visiting soon and in October I have a trip penciled in to go and see my son and his girlfriend in Alaska so I have plenty to look forward to this fall.   

As I bask in my good news my thoughts are with many who are dealing with less than favorable news.  Some of my fellow warriors bodies are just giving out against all the treatments and procedures.   I pray that god willing they get their second wind and are able to fight back.  If not, I still believe they will get their miracle.  They get to go to heaven.  A good friend from high school is just entering this cyclone with his wife recently being diagnosed, and some really close family friends (I consider them family) are dealing with the beast again.  My friend Rich had to say goodbye to his four legged chemo buddy Jordan.  Dogs are the best therapist.  I know how much my dog help me while doing treatments and surgeries and I don't look forward to the day I have to say goodbye.  I get how hard this is for him.  There is also a lot of great news as many of my friends are also still NED and living life to the fullest.  One is walking down the aisle next month with her sweetheart, one just refuses to stop believing, one continues to give me spiritual clarity in times of need, and another continues to wander around his own hotel keeping everything in order and keeping us entertained.   Some impress me with their mental and physical toughness to complete treatments I couldn't take, and others continue to answer the bell and come out swinging no matter what cancer throws at them.  You all inspire me. 

My blog doesn't get a lot of visitors, but many who do are fellow melanoma warriors.  I am going to enter the lottery to try and get a team for this event next year.  Click on the link below.  Can you imagine, a team of 12 melanoma survivors running a nearly 200 mile relay over 30 hours?   Check out this trailer and if this gets your blood pumping stay tuned.   Hopefully more news to come on this. 

Paul

Melanoma Black Monday

 
Getting ready for a new work week can be stressful.  The weekend comes to and end and work starts to creep back in to your mind.   It can be stressful.  I understand and want to help you alleviate some stress.  I want to help you get dressed on Monday morning.  Open your closet, find something black, put it on.  Its that simple.  Black matches everything as I understand it.   Seriously, here are some reasons why you should wear black on Monday and help raise awareness about melanoma. 

1.       Melanoma kills more young women below the age of 29 that any other form of cancer and is second to only to breast cancer in women up to the age of 39

2.       Melanoma rates among teens and people in their early 20’s are increasing at what some dermatologist are calling epidemic rates. 

3.       There is no cure for melanoma.    Prevention is the only way to beat this disease.  

4.       Melanoma is not just skin cancer.   You cannot just cut it out and move on.  This is a common misconception about skin cancer.   Melanoma is not skin cancer.  It spreads to your internal organs and is very aggressive. 

5.       The 5 year survival rate for stage 4 melanoma patients is about 10%.  Please see point 4 above. 

6.       Black is slimming and lets me honest, most of us can use this help

 

 Use common sense while outdoors.   We sun protective clothing, wear sunscreen, and please stay out of the tanning beds.  Using tanning beds even just a handful to times can greatly increase your risk of being diagnosed with melanoma. 

I have been battling this disease since August of 2010 and have endured 10 surgeries, 5 months of chemo therapy, and next week get the joy of starting radiation therapy.   To see that over 6,000 people have accepted the Melanoma Black Monday invite on Facebook gives me hope that we are making progress on the awareness front.   Raising awareness about this disease has been so important to me and my friends who are also battling it.   Finally it feels like we are making some progress. 

If you are wearing black on Monday thank you so much.  It doesn’t matter if you go full Johnny Cash like me or just wear a small black ribbon.  It’s the thought that counts and it means so much to me and others battling melanoma    I am heading out to hike Dog Mountain today.  Gotta get my fun in before starting radiation next week.   I don't really know what to expect.  I have heard everything from I wont have any side effect to I wont have the energy to get out of bed after three weeks.  Also there still is time to support me in my efforts to raise money for AIM at Melanoma by clicking the link below.

My AIM Portland walk page.

 

 

Aim At Melanoma Walk-Portland

On May 11th  I will be participating in an event to raise money for AIM At Melanoma .   Please consider making a donation to this great organization that has been so helpful to me during this difficult time.  AIM has been a tremendous resource for me and has been a great source of information on melanoma.  When I was first diagnosed it was far and away the most helpful resource I found.  I have used their call or e-mail a nurse program.  I use them to keep up to date on the latest treatments and trials for melanoma.   When I wanted to get involved in trying to help get legislation passed in Missouri to try and limit access to tanning beds for minors they encouraged me and helped me prepare to testify before both the House and Senate in Jefferson City.  Recently when I moved half way across the country I didn't have to worry about finding a new Dr.   Aim has a database of melanoma specialists and I am now receiving the best healthcare possible.  AIM also provided a forum for me to connect with other people battling this disease which has been so helpful to me.   Thank you all for your support and I really look forward to meeting some of you on May 11th in Portland.


Paul Hummel's Fundraising Page


I had to add this picture I took this last weekend.  I really do love living in the Northwest.

Update From The Pacific Northwest.

Well it’s been a pretty wild ride since I last updated my blog with any news.   The move to Washington has gone great and I absolutely love living here.  I have really enjoyed my time on Mt. Hood this winter.   I am not a great skier by any stretch but I think I have gotten much better this winter.  As the weather gets warmer I look forward to exploring the area on my bike and getting my running shoes back on and hitting the road again.  Unfortunately melanoma has decided to make another appearance in my life so I am in a bit of a holding pattern.   To make a long story short I keep having reoccurrences around my original site and once again have had to have surgery to have them removed.    With the move of course I have all new doctors and they have a different philosophy on how to approach my treatment.  My new surgeon alarmed me when I met with him and he told me that he really doesn’t think I am a surgical candidate any longer.   His opinion is that they can’t keep cutting melanoma out of me.   It grows back as fast as they cut it out and without some sort of alternate response he called surgery futile.   I actually like direct and to the point doctors but I was really alarmed after meeting with him.   What he said made sense but hearing it was a little scary.   In the end my surgeon and oncologist felt that the best solution for me was to start radiation treatments as soon as possible after surgery in hopes that it will prevent it from coming back.   I was actually relieved to hear that we were trying something different.   Finding suspicious lumps and nodules every few months is stressful and I know like playing Russian roulette.  I have been very fortunate that it has never spread beyond my original site but it’s just a matter of time if we can’t stop it from coming back like it is.   This time I ended up having 8 small tumors removed and I assume they are all going to test positive for melanoma.    The other option being considered was to start Zelboraf but I really wasn’t that excited about going that route.   Don’t get me wrong, if it had been their recommendation I would have but after battling interferon I really wasn’t that excited about doing chemo again.   I see it in my future but am not that excited to do it again.   I ended up having surgery this last week on Thursday and start radiation on May 7^th.   Surgery went really well and I feel pretty good for being just two days post op.    The biggest issue I had was how I was going to be back and forth to the hospital considering they wouldn’t let me drive myself home.   I ended up finding a way to make it work and was back at work the next day.   I really don’t know what to expect from radiation treatments but can’t imagine they are worse than chemo.   I just hope they don’t zap all my energy.   I am closing on my new house May 20^th and am really looking forward to getting out of my apartment.   My house back in Kansas City sold so my stuff is all on its way out.  I think getting out of the apartment with all the rental furniture and into a house with my own stuff will finally make me feel settled.  I will update as I get started on radiation to let everybody know how it is going.   I am hoping for a great summer and looking forward to these beautiful Pacific Northwest summers I keep hearing about.

 

 The best part of getting to go back to Kansas City and close on my house when I did was I got to be there for my grand daughters 6th birthday party.   My daughter was good enough to let me crash in her guest room while I was there and we had a great visit.   Cancer affects the entire family and having to share bad news with my kids, siblings, parents and friends is the hardest part.   Thanks you all for you text, email, and phone messages this week.  I may be far away from you all but I never felt alone this week as I was preparing for another surgery.   Your unconditional love and support means everything to me.   Every day is a gift.  
 

Discovering The Sea Shell

 

 

 

Inspiration can come from surprising places sometimes.   I stumbled upon this blog last week when somebody I follow on Twitter retweeted it.   I find it interesting to read and this weekend I keep  reading and rereading this particular post.  I find this poem very interesting and it really makes me think.   It reminded me of my freshman year in college when one of my professors would sit with me and help me while I butchered some classic poetry.   He really opened up a new world for me.  I tweeted to the author of the blog this am after posted this picture.  Last week was my turn to choke down the CT contrast dye.   Click on the link below to find the blog.

http://montalvod.tumblr.com/post/46502566193/discovering-the-sea-shell

 

 

 

 

My best tan ever wasn’t worth this



My best tan ever wasn’t worth this. 

Friday was surgery day for me again.   That was surgery #8 for those who are counting.    Hopefully next week when the pathology report comes back I get the news that the margins are all clear and I can put this chapter behind me.    It is scary for me to think that in two weeks I will be living in a new town and if I need more surgery it will either have to be with a new Dr or I will have to fly back to Kansas City to have it done.    Let’s hope it doesn’t become an issue.   I am excited to move to Vancouver and am really excited to start my new job there but I am not looking forward to having to find all new doctors.  I heard the statement “It’s just skin cancer” again last week. Well, “Just skin cancer” killed 24 people yesterday, and will kill 24 more today.   One of the lives taken Saturday was a young woman whose mother shared her brave and courageous fight with us.   I can only hope for an ounce of her courage and fight.   RIP Jillian, you have inspired me and I am sure many others.   Thank you Susan for sharing her journey with us.   You have done so much to raise awareness about this horrible disease.  

http://jilliansjourneywithmelanoma.blogspot.com/

Protect your skin, stay out of tanning beds, and see a dermatologist regularly.  

Changes

As if my life wasn’t crazy enough I am relocating to Vancouver, WA in January of 2013.   It’s hard to imagine moving across the country and I will miss my daughter and granddaughter more than I care to think about.   I am also terrified at the thought of continuing my journey with cancer without my trusted medical team.   I had a real eye opener this week when I was looking for an apartment to rent while waiting for my house to sell.  I toured 6 different apartment complexes around Vancouver.  Each and every one of them had free, unsupervised and unlimited access to tanning beds.   It’s been 30 years since I have lived in an apartment so I am wondering if this is normal for apartments?  Is this something unique to the NW of the country due to the number of cloudy days?   Not sure but it was stunning to see.  I am here for a few more days before heading back to Kansas City for the holidays.   My next trip out here I won’t be leaving.   It is still hard to imagine.   I have done some exploring around Portland and plan to do a lot more.   I think I will like Portland.  I drove out to see the ocean today but I am not sure why.  I walked on the beach some but it was cold and rainy.   It was nice to hear the sound of the surf again.  I have always found the sound of the surf very relaxing.   I also was excited to see that there is an AIM event in Portland in May.  Hopefully I can get involved.  Crazy times.

Paul

Lucky #7

Well today I underwent my seventh surgery since this journey started back in September 2010 and I am hoping it is my lucky number. When half the people at the local surgery center know your name it’s not a good sign. This was a follow up to my surgery a couple of weeks ago. As bothered as I am about the surgery I am much more bothered that the medical bills from two additional surgeries these last three weeks will prevent me from making the trip to Charlotte to walk with my molemates at the AIM event there this weekend. I know overall my problems are small and I am blessed but I was really looking forward to meeting everybody. Maybe next year.

 

Pushing The Reset Button

I think it is safe to say that every melanoma patient’s worse nightmare is to learn that they have had a reoccurrence of melanoma.  We have regular scans and do self exams hoping we never find anything.   Waiting for something that we hope never happens to happen.  Well this month my waiting came to an end.   After a long month of tests and biopsies I had a lesion removed yesterday from my upper left chest wall that tested positive for melanoma.   The surgery was actually the easy part of my last month.   The Dr visits, the scan, the biopsy, and the worse part of course all the waiting.  In the end I am very lucky.  My PET scan came out clear but the needle biopsy on the spot in questions was positive for melanoma.   The bottom line to me is that although this is not good news the fact that my PET was clear other than the known bad area is very good news and my cancer free clock starts over.  After 23 months cancer free I have to push the reset button.  Today I am cancer free one day and to steal a line from Rev. Carol I am grateful.   The positive out of all of this is that it affirms in a way that I am being vigilant and it works.   I noticed a suspicious bump on my chest went to my medical team and got it out before it could spread.   The million dollar question of course is where these cells came from.  It was just below my original site so I am guessing it goes back to my original melanoma.   Much more discussion to come between me and my oncologist on this subject to come.    

It has been so long since I have written anything.   This summer was a blur.  I can’t think of much that I wanted to get done this summer that I didn’t do.   I had a great trip to Alaska to spend some time with my son.  My daughters and I had a blast running 5k races this summer.  I forget how many we did exactly but it was several.  My times were horrible and I never came close to my goal of a getting in good enough shape to run a 10k but I am really enjoying running again regularly for the first time since my early 20’s.  I hope to keep it up all winter.  It’s killing me this weekend to not be able to run because of my latest surgery.  My running shoes are calling to me. 

Many of you know that the older of my two sisters was diagnosed with cervical cancer this fall.   Her experience has given me a different perspective on cancer.   It really makes me appreciate the caregivers in my life.   It is so hard to see somebody you love go through this battle.  The good news is that she is fighting back and doing great.  She finished her chemo a couple of weeks ago and has her last internal radiation treatment next week.   It has been really hard on her but she is fighting like hell and on her way back.  We were talking about the menu for Thanksgiving here in a few weeks so I know she is feeling better.   Two weeks ago she didn’t want to talk about food.  She and I are hanging out together this weekend taking care of each other.   Going to her chemo treatments was an interesting experience. Just walking in there and seeing those chairs and the bags of fluids brought back memories of being a patient there myself   I got that metallic interferon taste in my mouth as soon as I walked in that room.  i am glad I could go with her and give her some support but am glad it is over with. 

Prayers For Steve

 

July 17th Update

Steve got the call yesterday that it was time to come home. He fought like hell so he could spend a couple more months’ among his friends and family. I was so inspired by him. Whenever I pull out my black Livestrong "Fight Like Hell" t-shirt and put it on I will think of him. RIP Steve. You have inspired so many.

___________________________________________________________________________________

For me to call Steve a friend is a bit of a stretch.   We know each other only as we cross paths on various melanoma sites and though mutual friends.   His latest post is below and I ask for your prayers for him and his family tonight, especially his young children.  I consider myself a man of faith but have to be honest in saying at times like this I don’t know what to pray for.   It sounds like he has another brain tumor and he may be in the last stages of his battle.   I am holding out hope for a miracle.  Melanoma is a horrible, fast spreading, deadly disease.  Use some common sense while outside this summer the stay out of the human sized rotisseries known as tanning beds. 

Steve’s latest post.

im sorry. but im done fightng,m thism isnt a life anymore. thanklyoui to all my friends that stuck by me especially my m0m aand dad. my sister and best nest friend bryan and my girl tami who has stuck by me noo mater what. i my arm is just about dead now i have a huge tumor in that po[ped up almost over night and had the worst seizure i have ever had, so i sai all i have to. Thank you for the love and suppoort. i love you all. too hard to write anymore. th ngs are just bettin g worse by thr hour. please get your skin checked :'( p,lease you dont want to die like this. ill give my phone to tami and she can update, i dont want to thin k abouit any more. I love you all ♥

Interferon Treatments and Vegas or San Diego?

It was a year ago this week that I pumped the last few ounces of this crap into my veins.    I wondered how I would feel a year later.  Would I regret my decision?  Would it make we wonder how tough I was?  What did it say about me that I quit just past ¼ of the way through my supposed year long treatment regimen?   Well a year later I really don’t have any answers but I don’t seem to be asking the questions near as often.  I guess that is progress.  A year later I physically feel so much better.  But mentally I hadn’t really realized how far I had slipped.  I still have short term memory loss and at times will see people I recognize and know that I know but their names just don’t come to me   .  I recently had to get a copy of my chart from my oncologist (more on this later) and in reading his notes I can read that he noticed it.  He was mentioning it way before I had called it quits.   I am sure my friends and family saw it but there was nothing they could do.  As I posted in my original post the week I quit treatments (http://onemansjourneywithmelanoma.blogspot.com/2011/05/no-mas.html) I do not regret starting interferon, nor do I regret quitting.   I just couldn’t do any more.  I felt like I had fallen off a cliff and no matter what I  couldn’t seem to get back above ground.   In hindsight I realize the problem is I let myself get bad enough I fell off the cliff to begin with.     I don’t see any reason to look back when the future is scary enough for melanoma patients.  I am sure if some day my scans no longer show me to be NED I will wonder what if I had taken one more month, one more week, maybe just one more treatment……..    Where would it end?   We will worry about that day if and when it comes. 

While waiting to testify before the house subcommittee on health care issues in Missouri I met two very nice doctors.  One is the dean of the school of dermatology at MU and the other was one of her former students.  When I told them both about my case and that I had taken just under 5 months of interferon treatments they both suggest I go to see an oncologist that was affiliated with MU who was doing treatments and trials the same as MD Anderson and was achieving great results.   I flip flopped back and forth about going to see him for a month and finally at the encouragement of my older sister made an appointment to go and see him.   To make a long story short he didn’t recommend I do anything different than I was doing but was kind enough to take almost an hour to talk to me which I really appreciated.  A very nice man and it gives me something to consider should the beast return.  I absolutely didn’t consider it a waste of time.  I thought to myself on the drive back home that I was just attention seeking.  I hadn’t seen my own oncologist for 90 days and was having oncologist withdraw or something.  Oh, so that is why I asked my current oncologist for a copy of my own chart.  Curious does anybody else keep a copy of their own chart?  I had about a 60% copy and wanted the complete story.  It actually was enlightening and pointed out another flaw in my approach to this battle.  Once the girlfriend and I were no more I went to all my Dr appointments alone and to be honest I don’t remember most of them.  Reading his notes was like reading about somebody I didn’t know.   I really like Dr. D and am always afraid he is going to retire one of these days.   I was an amazing stroke of luck that I ended up sitting in his office in September 2010.  As a side note the Missouri House did recommend that they pass HB1475 when it comes to a vote before the full house so restrictions on teens being able to tan in Missouri are a step closer   This bill basically made it this far last year so maybe this is the year it makes it through the senate and we get to see if Governor Nixon will sign it into law or not. 

One of the greatest things to come out of this experience is the people I have met along the way.  I have met so many brave and courageous people who are on some version of the same journey as me.  I don’t always post on Facebook or on your blogs but I follow so many.  You inspire me and give me strength when I need it.  Days like today are a little rougher than others as I see another warrior has been called home.  Another family says goodbye to their daughter, wife, mother, and friend.   We fight on my friends and live for the moment.  I still plan to live another 40+ years but none of us are guaranteed anything.   This is also the one year anniversary of me publishing my blog for the first time.  I can still remember the sick feeling I had in my stomach when I hit publish the first time.   It is funny the things I found scary.  I am spending two weeks in California for work so this weekend finds me in Victorville, CA.  Vegas is about 2 ½ hours one way, San Diego is 2 hours the other way.   Not sure what I am going to do yet.  I may even just stay here.   Lots of mountains and I am sure I can find a place to go for a good hike.

Paul



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 15^th 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 5^th 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. 

http://letsgivethanks.blogspot.com/2012/02/come-over-to-dark-sideof-melanoma.html

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 8^th 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.  

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