Good News, Some Noise, & Dylan Tune Stuck In My Head

Well the good news is that the biopsy I had done a few weeks ago has come back with favorable results.  No sign of melanoma which as you can imagine makes me very happy.  The "noise" as I am calling it is that they want to remove the mass anyway just because it is in the area where the affected lymph nodes were  So on August 22nd I go back under the knife for more surgery and another scar from the battle.  Its outpatient and I shouldn't be under for more than an hour.  The shame of it is that my left arm is just now starting to feel normal from the lymphectomy  I had done in December.   I don't really know how much this surgery will set that back and it really doesn't matter.  Again I am so happy to have Dr. M as my surgeon.  He never tires of my endless questions and always takes whatever time I want from him. 

I ended up getting stuck in New Jersey this weekend.  I was scheduled to fly home Friday afternoon and fly back Sunday night.  Continental has been having labor issues all week that stems from their acquisition with United late last year.  The beef as I understand it is this.  Both airlines have pilots on layoff status.  The Continental pilots feel that they should recall all Continental pilots first before offering jobs to layed off United pilots.  I guess this isn't what is happening.  I heard a bunch of pilots bitching about it last week as I was riding the train around Newark getting my rental car.  So they had a sick out this week in protest.  I think this is actually illegal on their part and think it will be interesting to see what happens.  I am guessing nothing.  How do you prove a sick out?    So my flight was coming from Louisville, but canceled due to unreported issues.   I am guessing no pilot or co pilot.  No biggy, they assign a different inbound flight for us to use for our return to Kansas City.  The whole time flights are being canceled left and right over the PA and the line at the customer service desk is getting huge.  Then the mother of all storms blows into Jersey and they pretty much cancel every flight going out that evening.  My opinion is that Continental was being opportunistic and used the weather to cancel all flights so that they can use the weather as an excuse and not have to compensate people.  Anyway, the last thing I want is more free flights.  So I went back and got a new rental car and headed back to the hotel that I had checked out of earlier that day and checked back in.  For all you Pawn Star fans I ran into Chumlee at the Budget rental counter in Newark.  Pretty much just like you see on TV.  Very friendly and personable guy.  I spent yesterday in NYC at the metropolitan museum of art.  All I can say is wow.  What an amazing place.  The city is just packed this time of year and tons and tons of people everywhere.  I look forward to the tourist season being over so its not so crazy, just normal NY crazy.  The freedom tower is coming along nicely finally and you can see it from Jersey now as you are coming in on the train.  The five hours I spent sitting at the airport waiting for them to cancel my flight I had this Dylan tune stuck in my head.  Like most Dylan tunes I have no idea what he is trying to tell us, but it somehow seemed appropriate.  My favorite version of one of my favorite Dylan tunes.  I forget where Rollin Stone had this song on there top 70 Dylan songs but remember thinking it should be higher.  Am I the only Dylan geek who read that edition of Rolling Stone? 

 

I really didn’t need another reason to hate cancer or any reminders about what’s at stake in this battle but I got one today.   A fellow warrior and blogger was taken home last night.  RIP Tina, your fight was not in vain.  Every hour somebody dies form melanoma, this one hour it happened to be somebody whose blog I followed.  It sucks. 

"Good, strong people get cancer, and they do all the right things to beat it, and they still die. That is the essential truth that you learn. And after you learn it, all other matters are irrelevant. They just seem small."

 Lance Armstrong

  Pale Skin Is In

It is with a heavy heart and great sadness that I let you know Tina's journey has ended. She went peacefully this afternoon, and was surrounded by family. Tina's story of her battle with melanoma touched many people, and was an inspiration to all - she will be missed dearly...

I’m a cancer survivor; now what?

I'm a cancer survivor, now what?

Click on link for story

I really enjoyed this article and found it a great read.  It always makes me feel better when I realize I am not alone in how I feel or think.  I commented that I could relate and felt like one of those animals you see on Nat Geo that they dart from a helicopter and then release back into the wild feeling groggy and wondering what the hell just happened to me.  There is this expectation from people that the day you finish treatment you are “cured” and the birds start chirping, the sun starts shining, and you just float back to your old life as if nothing happened.  Ironically a year ago I was one of those people.  I remember when my friend Reuben called me to tell me he had been diagnosed with prostate cancer.  I was shocked at the news and kept in touch with him during his surgeries and treatments but once he finished I figured, well he is cured and should be back to his old self.   When I was diagnosed he was the first person to call and welcome me to the club.  The point of this seemingly senseless rambling is to update where I am at today.  For the most part I feel good.  Physically I am still getting my strength back but feel better all the time.  The side effects of the interferon continue to lessen and my outlook is better every day.  I guess an area where I still have a lot of work to do is anger.  I am just pissed at this disease.  Angry at what I have put my family through, angry at what it has cost me, angry at the toll it took on my personal life, angry at the time I have lost.   Well meaning people tell me how I should feel now.  Honestly I feel guilty that I don’t feel as happy go lucky as they think I should.  I know they are right.  Many people don’t get a second chance.   Early on in my diagnosis one of my doctors said to me that I will most likely only get once chance to fight this disease.    For reasons known only to god I seem to be winning so far.  Others, some of them better people than I for sure, have not been so fortunate and that knowledge is always with me.  I think Lance Armstrong calls it the duty of the survivors or something along those lines.  I take this duty seriously and eagerly.   I am determined to support others involved in this battle, support cancer charities to whatever extent I can, and educate people about cancer and maybe by sharing my story I can help somebody.  I am a huge supporter of the LIvestrong foundation and believe strongly in their purpose.  Their manifesto is nearly scripture to me.   I am still trying to get a feel for my new reality but it does get more comfortable as time goes by.  I enjoy life more than before.  My visits with my children feel more special, watching my granddaughter play or hearing her tell me about what she learned at school that day brings me the greatest pleasure.   Just the energy that I absorb from being around her makes me happy.   I look forward to visiting my youngest in Colorado next month after she starts college, my next plate of sushi with my middle daughter, the next story of adventure from my son in Alaska.  I look forward to visiting my brother in Atlanta to watch my mighty Jayhawks battle the Georgia Tech Yellow Jackets in football this September in what I am calling the boy I wish it was basketball season again bowl, and my next visit to New York to do whatever seems like fun at the time.  I will never again take for granted visits with my nieces and nephews or my sisters and brother.   My mom and dad continue to be the rocks I lean against when I need them.  I look forward to roaming The Strip with my mom again when she gets her knee repaired, and taking dad to another race weekend at Kansas Speedway.   I look forward to seeing my teammates/coworkers when I return to New Jersey every week.  They have been great therapist to me and probably don’t even know it.   I also have bad days, more than I care to admit to,  when I think about what if the next scan isn’t so favorable, what if one of my new friends who are also engaged in this battle gets bad news.   What if some clown runs me over tomorrow while I am out riding my bike.   It’s easy to say I won’t live in fear; it’s harder to do it.  Fear and anger, two powerful emotions that I struggle to keep in check.  The journey continues to take twist and turns, and there continues to be highs and lows but the best part of the journey I realize is that it continues.  I don’t have much control over how long but I do control how much I enjoy the ride.   

Now for the more direct part of my post, the dreaded medical update.  I had my normal 90 day check up with my dermatologist last week and for the first time ever he didn’t find anything to carve off of me.  No suspicious areas or problem spots to biopsy so that’s one less stressful phone call for me to wait on.  90 more days of peace and monthly self exams.     He also recapped my last visit since I really don’t remember being there.  My last visit there was towards the end of my interferon treatments.  The other news on the medical front is that I had my first needle biopsy last week.   Let’s just say I have had more enjoyable experiences.  I should get the results back from that next week sometime.  That is the follow up to the follow up to the follow up to my last PET scan.  I jokingly told Dr. M last week that I will still be doing follow ups when I get my next scan.  He was able to find the spot they noticed on my scan and did the needed biopsy.   Dr. M is the nicest guy and I really feel lucky to have had him for my surgeon.  He moved the monitor so I could see what he was looking at and watch as he worked the biopsy needle into the mass in question and took a piece out.  It really was interesting to watch.  It made me think of my son who is deathly afraid of needles.  To me it’s just another Dr Visit and two hours later I was at 30k feet winging my back to Jersey.  He didn’t think it looked suspicious but wanted to do the biopsy anyway just to be safe. 

It has been a crazy weekend, I think I am actually home about 35 hours before I head back to the airport and return to Jersey.  Again, I love what I do and the people I work with but I do miss being home and having a more normal life.   The good news is that after next week I will be Gold Elite with Continental and Marriott.  Pretty exciting

FDA-Friend Or Foe and Tanning Bed Thoughts

There has been a lot of talk about cancer in the news lately, maybe there always has been and I had the luxury of not paying much attention to It before.  The story that really grabbed me was about the FDA’s unanimous decision to no longer approve Avastin for the treatment of metastatic breast cancer.   I am no expert on either subject but it makes me sick to my stomach to hear this ruling.  Metastatic breast cancer has no cure and this drug was the only option for people facing some pretty rough odds.  There are many sides to this argument.  The FDA felt that the side effects and cost of this drug were not offset by its results.  Much like interferon this drug was not curing people, but it was extending their lives.   Some people report amazing results from taking this drug.  I don’t believe that it’s some conspiracy by large pharmaceutical companies who are afraid that this drug could be a cure for cancer.  Nor do I believe that the insurance companies are behind this because they simply don’t want to pay for it.  I think this is just a situation where business, science, government, and medicine all arrive at a crossroads at the same time.  It’s a very uneasy place.  If this drug was $400 a month it’s maybe a different decision.  Doctors can still prescribe it but insurance companies now have a reason to not over it for this purpose.  Nobody expects them to cover claims for Avastin for metastatic breast cancer.  The bottom line of this for me is that this drug gives people in a very desperate situation hope and there is nothing more powerful than hope. 

The other issue that seems to be in the news a lot lately is tanning beds and their use by minors.  I want to be very clear on this.  I strongly support banning tanning beds for minors.  I dislike tanning beds for a lot of reasons and as you can imagine their link to melanoma is the biggest one.  Many states have passed legislation that make it illegal for minors to use tanning beds and my home state of Missouri had legislation last session that made it a requirement for minors to have the consent of their parents before they can use tanning beds.   We should think of minors using tanning beds the same way we think of them smoking.  Minors cannot buy cigarettes and they should not be allowed to use tanning beds.  The provincial government of New Brunswick launched a campaign that featured the picture above.  I think this is a great ad and not over the line at all.  I am of the opinion that if people really understood the effects of tanning beds they wouldn’t use them.  Tanning beds bring in over 2 billion dollars a year in revenue.  That’s a staggering number but minute compared to tobacco revenue.  I chain smoked for most of my 20’s and 30’s but I never thought for a second that it was healthy.  I knew it was raising my risk of getting lung cancer and that risk eventually lead me to quit.  I don’t think people who use tanning beds do so with the same knowledge.  Banning tanning beds for minors is just a small piece of what needs to be done.  This ban needs to be followed up with education about all cancer risk, sun exposure included.  It’s easy to throw stones at the tanning industry but if we don’t do a better job of educating people, especially our young people, about the risk of sun exposure we would have fought only part of the battle. 

 

Well that’s my pointless ramblings for the night.  I continue to feel well and am home this week which is really nice. My youngest is out in Fort Collins, CO this week for orientation at CSU.  My days of living in denial about her leaving for college soon are about over.  I had a great 4th of July, sitting in the shade and soaked in sunscreen.  I came across the Facebook page below this week/  It is by the mother of a young lady named Serena.  She is 6 or 7 years old and a fellow melanoma warrior.  She has been through 8 surgeries and endured 10 months on interferon.  I only could take about 5 months on interferon before I had to quit.  She is a tuff young lady and obviously a fighter.  Keep her and her family in your prayers this week.  They can use all the positive energy they can get right now.  As I said earlier this week on a friends post about Serena, god I hate this disease. 

http://www.facebook.com/photo.php?fbid=10150249844444916&set=a.55657659915.61916.6195089915&type=1&theater#!/pages/Serenas-Fight/178408288887479

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

Dr. D puts on his game face and enjoying a beautiful day.

Yesterday was a great day. The weather was absolutely beautiful. The temperature was in the mid 70’s and not a cloud in the sky.  I had an appointment with my oncologist in the morning and was anxious to see him.  Last week my PET scan came back clear but there was a suspicious spot that they really couldn’t see on the scan.  He told me over the phone that it wasn’t a big deal he wanted to examine me anyway just to be safe plus I hadn’t seen him since I stopped interferon treatments so I wanted to ask him some questions as well. I have learned over many Dr.  visits that Dr. D has a game face that he puts on when things are getting serious.  I had seen his game face a few times before and I recognized it right away when he walked in.  Usually he is really talkative and we visit about whatever before we get to the point of my visit.  My sister actually pointed it out to me on one of my first visits to see him.  So immediately he ask me to remove my shirt so he can examine the area in question which is just under my left arm in the same area that I had surgery in December.  He examines me, looks at my scan, examines me again, sits down at a desk, and lets out a huge sigh of relief.  He tells me that the area in question is the exact same spot that I have had to have drained once before and most likely that is all it is again.  He said he was relieved and that we are still in the driver’s seat which is great news.  It was kind of a moment for me to be honest.  I was so angry at him last week over how long it had taken him to get back to me about my scan but I was reminded that we are a team and the fact that he was so concerned meant something to me.  I wasn’t upset that he didn’t let on last week how concerned he was.  There was nothing that I could have done and there was no need to worry me.  Now this is not great news that I had a spot that was “Hot” on the PET scan but the location is important.  Should it be a tumor it’s in the exact spot when I had it before so it wouldn’t be spreading, it would be leftover from the first occurrence.  It also would be at the very early stages and as he said this is reason why we do scans, to catch things early.   I hope that makes sense.   The worst news I could get is that cancer has spread to another spot on my skin or internally to one of my organs.  That is definitely not the case right now and everything beyond that is just news.  So I have to see my surgeon again in a couple of weeks and see what he thinks.  I seriously doubt he will see the need to open me up again and the fact that Dr. D said it wasn’t any big hurry is an indication that he also doubts it also.  He always remembers that I travel for a living and ask my travel schedule. When I told him I wasn’t scheduled to be home until the week of June 13^th he said that would be fine and there was no need to change my schedule.  In the past he has not hesitated to tell me when I needed to change my schedule for a test or procedure.  We ended the appointment with stories about our favorite delis in New York.  He swears the Pastrami at Katz’s deli is the best in the world and if I haven’t been there I haven’t been to the best.  I have always thought of it as a tourist attraction ever since it was in that movie.  Apparently I am very wrong.   Anyway, something else to do on my next trip into the city.  Wonder if Hopstop has directions because if they don’t I won’t find it.  So that’s that latest on the medical front.  I continue to feel great.  I get a little stronger every day my hair has started growing back. I never went bald but my hair thinned considerably to the point I could see my scalp through my hair.  The worst part was the colored hair was all that seemed to fall out.  It’s definitely growing back and my son made my week by saying that it looked like my hair was returning to its old color, even less gray hair than before I started treatment. 

After my Dr appointment I went to have lunch with my daughter Jenny.  We went to one of her favorite places on the Plaza, the Kona Grill. We sat outside and both ate sushi. There is something about hanging out on the plaza on a bright sunny day.  If I worked downtown I swear I would live down there somewhere.  We visited and had a great time.  I have become a big sushi eater and I have Jenny to thank. She got me started on it a few years ago and I love it.  After that I came home and got on my bike.  For those of you who have ridden with me before I did the buffalo route.   I rode out and saw the buffalo and rode back. I  Hardly my old pace and that use to be a good warm up distance.  In the old days I would ride out to see the buffalo and keep going around the lake which is a hilly mother and I love riding out there.   Not only is there a large heard of buffalo but there is also a heard of elk.  In the fall as I am riding around the lake I can hear the elk bugling for miles.  It reminds me of living in Colorado.  And best of all there is almost no traffic so I can zip up and down the hills and not worry about being run off the road. The hills will have to wait but I will be out there soon.  My goal is to ride a little every day while I am home.  I could have ridden the hills yesterday but I was afraid I wouldn’t be able to ride today if I did.  On the way home I ran into my son who was jogging and we had a nice visit as well. He is due here pretty soon and we are going to go for a short ride.  Last night was Sara’s last piano recital. Her recital went well and she played beautifully.   Next year I will miss hearing her playing the piano.  I think I am in total denial about Sara these days.  I don’t think it will hit me that she is 18 now and leaving for college until the day comes for her to leave for Ft. Collins.  I have a few more months to pretend she is still 6.