Birthday Recap and Doctor Frustration

Thanks again for all the birthday wishes.  For many years I have hated birthdays.  Getting older seemed so overrated.  Well after the year I have had I loved turning a year older and 47 sounded great.  In fact I can’t wait to turn 50 in a few years.  I am feeling a good kegger coming on.  Seriously the new perspective on life I have gained this last year has been the most valuable thing to come out of this battle.  An old family friend posted on my wall this week that her husband Roy who has been fighting a battle of his own says that happy birthday is a victory song for cancer survivors.  I couldn’t agree more.  Monday night the 13^th I went to have dinner with my Sister and brother in law and my three nephews were also there along with my youngest daughter Sara.  I love being an uncle and was so glad to see them.  On my birthday my girls and I went out to dinner and then came back to the house for cake.  The girls were wonderful and my granddaughter made me a card that is proudly displayed on the refrigerator.  I swear she has grown a foot since I had seen her last. 

I have been home all week and it’s my first full week at home since the second week of April.  It is so nice to spend some time with my girls and sleep in my own bed for a week.  I have put about 100 miles on the bike this week which has felt great.  I really wish I could ride while I am in Jersey.  I also spent the week out at the plant where I have worked for the last 11 years before I started on the project.   It is always nice to go back to the plant and see everybody but it has been over a year since I have worked there and feel a little out of place when I am there.  I spend the majority of my time working in Princeton and am really out of touch with what is going on at the plant. 

It was a frustrating week on the medical front.  I had an appointment to see my surgeon to get a look at the PET scan I had done a few weeks ago and the small area that looked questionable.   Dr. D told me on my last visit that he would call him personally and get a copy of my scan to him so he could review it.  Well I get to my appointment and Dr. M has no idea why I am there.  I almost always carry my file with me which has all my test results in it.  I don’t have a copy of my last PET scan for some reason and it’s the only test I don’t have a copy of.  Dr. D wasn’t in the office yet and it wouldn’t have mattered since the PET scan is not something they can fax over.   He is going to get a copy and review it and call me he said.  I was frustrated with myself for not following up with my oncologist office to make sure they had sent the test over and for not having a copy of it with me.  I am a big believer in being a proactive and involved patient and blamed myself as much as anything.  Anyway, I spent a $40 co pay to flirt with the pretty nurse and visit with Dr. M.  Not the best way to spend my time.

I plan to spend today with my girls before having to fly back to New Jersey tonight for two straight weeks.  I am planning to spend next weekend in New York but really don’t have any plans yet.   I think I am going to rent a bike on Saturday and see the city that way for the day and then Sunday either go see the Yankees play the Rockies or one of the million museums I haven’t seen yet.   It’s always hard to pick what to do when I am in New York.

Catching Up

I recently finished reading Lance Armstrong’s book titled It’s Not About the Bike.  It was an amazing read by an amazing man telling an amazing story.  If you want a glimpse of what it is like to go through this battle I highly recommend reading this book.  I think people see what this disease does to us physically but that’s only a part of the battle.  I have always been a Lance Armstrong fan only knowing part of his story.  I knew he had cancer and won ton of races in France but really didn’t know the details of his story.  I don’t know how many times I read something and thought to myself that I felt the same way or had the same thought.   I passed it on to another warrior who I think already has plans to pass it on to another. We are not helping Lance’s book sales numbers but we are sharing his story.  Lance has been in the media again lately over allegations of performance enhancing drugs use.  Depending on the day I feel differently about this.  I have a ton of respect for what Lance has done with his fame and fortune.  He just as easily could have taken his money and new found fame and done many different things.  He started the Lance Armstrong Foundation and Livestong which has done amazing work supporting people affected by cancer.  After over 500 different drug test he has never tested positive for anything.  The latest reports are that he failed two different tests and somehow was able to cover it up or buy his way out.  I have a hard time believing this.  For an anti doping agency there is no bigger fish to catch than Lance Armstrong and I find it hard to believe any agency would let him off the hook.  Livestrong is now a worldwide movement and offers support to the 28 million people who have survived a bout with this disease.  Cancer made Lance put all his chips in the middle.  His career, his fortune, and his life were all in play.  After treatment one of his doctors confessed to him that his chances of survival were about 3%.   The chemo he endured was horrific and I find it hard to believe that he would go and put a bunch of chemicals in his body after that experience.  I also am not naive.   This guy is knocking off Tour De France titles one after another during an era when riders are failing drug test right and left.  It certainly looks questionable.  Lance gets the benefit of the doubt from me however. Reading his book reminded me how much better I have it than others.  His chemo was brutal compared to what I went through.   

Earlier this year my nephew Jeremy was asked to sing the national anthem at Kansas Speedway before the NASCAR truck series race.  This is the second year he has been asked to do this and this year he asked me if I wanted to join him on the day he sang and also the following day for the sprint cup race.  At the time I was still taking Interferon and I told him yes but was sure that I wouldn’t be able to go.  Since I am no longer taking interferon I was able to go both days.   I think most
people who read  my blog are also Facebook friends and I have posted a bunch of pictures from the weekend.  It was a blast but if ever if there was a crowd that needed some skin cancer prevention education it’s the NASCAR crowd.  Lots of bare red skin everywhere.  Ironically a year ago I would have been one of them.  Not this year, pants, a collared shirt, a hat, and lot and lots of Sunscreen.  We had passes that allowed us to go just about anywhere except drive on the track.  We saw a ton of drivers and owners up close and even had a brush with the king himself as well as Roger Penske. Jeremy got to meet Jeff Gordon who he is a huge fan of which was one of the highlights for me.  Being in the pits during the race, being in the garage before and after the race, and having full access to the media center was great.  We ate and drank for free and could retreat to the air-conditioned media center anytime we needed to cool off.    Jeremy knocked out the national anthem as I knew he would, all while rockin the Livestrong band in support of among others me which was by far the coolest part of the weekend for me. I posted a link to the video of him singing below.   He is a great kid and extremely talented.  Luckily he gets his musical talents from his mom and dad and not his uncle Paul.   I am blessed with wonderful nieces and nephews and their support during my trials this last year has not gone unnoticed or unappreciated.   I have said it before but I will say it again I have no idea how people get through this without the support of their friends and family.  I spent my first national cancer survivor’s day as a cancer survivor hanging out in the pits with Jeff Gordon and Dale Jr., I got to see Richard Petty and Roger Penske, and watched most of the race from pit road.  Take that cancer and I hope you could feel the collective energy of over 28 million cancer survivors all flipping you the bird on the same day.

 

  I physically feel great.  I put 20 miles on the bike yesterday and if the weather clears plan to go and ride some hills today.   I am home for the full week which I think is the first time since early April that I have had a full week at home.  I am really looking forward to being here but will miss my friends on the project, and not having to make my bed.  I was trying to explain to somebody earlier this week how I feel mentally and it’s hard to put into words.  I just feel a little off still.  My memory is getting better and some of the chemo brain symptoms are starting to slowly fade.   I want my old life back but either can’t or won’t go back to it.  I know its all part of the process but that’s where I am at now.  I’m not taking any kind of treatment any longer and the constant Dr appointments and test have come to an end for the most part.  One day you are just another stiff trying to make a living, the next you are a cancer patient and things come at your so fast.  Decisions have to be made and there are a constant flow of Dr appointments and test and procedures.  It’s just a crazy pace.  Well now it has all ended almost as fast as it started and I guess I am “Cured” or at least as close to cured as a melanoma patient can be.   Again it’s hard to put into words, I just feel a little off for some reason.  I am sure my kids and co workers would tell you that I have been a little irritable lately but ironically I feel great both physically and mentally.  I am enjoying feeling good and know how lucky I am.  I have regained my taste for food, beer and good wine so what’s there to complain about.  I will just keep moving forward and figuring it out as I go.  I have an appointment with my surgeon this week so maybe that will make me feel better, ha ha.   I want to ask a favor of everybody who follows my blog or reads my post on Facebook. One of the first blogs I followed is called Pale Skin Is In (http://www.paleskinisin.com) and it is written by a lady named Tina.  She has been struggling lately and just this week moved from the hospital back home with the help of hospice and will continue her battle there, a battle that began in April 2006.  Please include her and her family in your thoughts a prayers this week.    

Paul