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

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.