Late Christmas Gift

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

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

Paul

Thanksgiving Thoughts

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

Paul

Great News

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

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

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

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

So Long R.E.M. And Looking Back

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

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

Paul

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

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

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

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

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

Paul

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. 

Great News Today

First off and most importantly I wanted to share with everybody that my latest scan shows no signs of cancer anywhere so that is excellent news.  It was an extremely long week since I had my test done last Thursday and I was really disappointed in my oncologist this week.  For the most part he has always been very responsive and timely in sharing test results.  This week it went badly in my opinion.  I really should not have to wait 7 days for my test results when others are getting them within hours.   At some point I will have to do a post ranting about how hard it is to get test results and copies of my records.  I keep my own chart and have copies of most test I have had done.  Some places are really good about it and others are a pain in the ass.  I will be looking around before my next PET scan to find something better than the experience I had this time.  I won’t get started as I think that is a rant for another day.  I am still cancer free nearly 9 months after initial diagnosis and I don’t take that for granted.  Others are not as fortunate. 

May is a crazy month in my family.  All three of my children and one of my sisters were born in May.  This year we had the added bonus of two high school graduations, one for my daughter and one for my niece Erica.   On Sunday one of my nephews will be walking the hill (graduating) from the University Of Kansas.  In a true stroke of genius he immediately will enroll in grad school and somehow got a job in the athletic department and they will pay for his schooling.  I have offered numerous times over the last four years to switch jobs with him but so far he isn’t interested in my gig at all.   I am very proud of all of you and am excited for all your futures.  There will be lots of family around this weekend and I am looking forward to seeing everybody.  My son is still in town and I am looking forward to spend some more time with him before he heads back to Alaska.

I have what I like to call the stuck in Newark blues tonight.  My flight was scheduled to leave at 8:50 and has now been pushed back to 09:50.  This has been the trip from hell.  Flight canceled Sunday, along with the next two flights to Newark.  On Monday I couldn’t get here before 10:00 pm which with delays turned out to be midnight.   Now my flight home is going to be late.  So I will land about 1:00 am EST as it’s scheduled now.  I hope there are not many more delays or the Newark Marriott will have an extra guest tonight. 

That is my ex wife and my youngest daughter in the picture below and it was taken last week at her graduation. Her mother and I have had our issues over the years but when it came to raising our children we were always able to put whatever our issues were aside for what was best for our children.  Being a divorced parent is difficult, and I imagine being a child in a broken marriage is even more difficult.  We have successfully raised three great children and I think we both can take a certain amount of pride in that.  i can't believe in the fall I will be an empty nester. 

A Huge Thank You and What Is Next?

First off I really want to thank my brother in law Chris.  He is going to show the Dear 16 Year Old Me video to his high school health sciences class before school lets out.  Other than beating this disease personally what I want more than anything is to prevent somebody else from getting it.  Getting that video shown to as many people as we can is a step in that direction.  Thank you again Chris. 

I have received a lot of feedback from people about my blog.  I want to thank everybody who wrote on my facebook wall, commented on the blog, and e-mailed me directly.  I was really surprised by the emotional reaction some people had.  I guess since I lived it I didn’t have that reaction as I was writing it.  I appreciate the comments and messages.  It means the world to me to hear people have read my blog and learned something about melanoma that they didn’t know.  The intent is not to make anybody cry or draw attention to myself.  I do it selfishly because it makes me feel better for some reason and I feel a responsibility to try and prevent other people from having to go through this.  The worse side effect I still have is a pretty bad case of “Chemo Brain” but think in time I will recover.  Chemo brain is basically loss of short term memory, lack of ability to multi task, stuff like that.  Some of it will never go away; some of it will hang on for 5 years.  My hope is that since I was on Interferon which is a protein that I will recover 100%.   

The most common question I received was what is next for me?  Well, to be honest I am not sure.  I won’t see my oncologist for another two weeks but to the best of my knowledge at this point the plan is this.  I will continue getting PET scans every six months for the next year and a half.  This is the most important test I do, if melanoma has spread internally this is the test that will show it.  This test and ones like it have caused a new word to be created.  Scaniety and its very real.  My next PET scan is Thursday morning.  I will get more radioactive crap in my veins, an hour sitting in the dark because I am too radioactive to be around healthy people, and another slow trip through the tube of strange noises.  Scaniety to me is the fear of the results of your scan, and the anxiety you feel leading up to and after your scan.   I usually get my results in a few days and I will be a nervous wreck.  When my cell phone rings and I see Dr. D on the caller id I will feel like getting sick.  Last night I didn’t sleep thinking about the scan.  My hope is that I am so tired tonight that I sleep better.  I will take whatever news comes my way and we will keep moving forward.  Just as important as the PET scan are my visits with the dermatologist.  I see Dr. Allen every 90 days, it was every 60.  He really is the first line of defense and if I have any questionable spots he removes them.  So far he has taken 4 or 5 questionable spots off of me and they have all been negative for melanoma so we are off to a good start.  I don’t think I have mentioned him before but he has also been a great resource for me.  He spends a large amount of time on all my visits to his office teaching me about what looks good and what looks bad.  I plan to see my oncologist the first week of June and see if any of these schedules will change but I don’t think they will.  I also hope to talk to him about what if anything I should do next.  My guess is as long as the PET scan is clear the answer is nothing.  I am officially in “Observation Mode”

Again, I feel great.  My son is in town from Alaska and he and I had a great time Saturday riding bikes.  He is the reason I am on a bike, he gave me one of his hand me downs about 5 years ago.  Riding my bike is very relaxing to me, even if it is 1/3 of the distance I was riding last year at this time.  My legs felt good, my lungs hurt like heck.  My older daughter started a new job today and she reports it went well.  I am so proud of her.  We had dinner on Saturday night, I grilled salmon and asparagus, two of her favorites.  My baby is graduating from high school this week.  Hard to believe.  Where did the time go.  We got the date she moves to Fort Collins, CO last night.  On August 17^th she is due at her new dorm at CSU.  I am very happy that she is going to get to go out there for college.  She was born about 10 miles from where she will be living again.   I guess the world is round.  That is me and her mom in the picture at the top of the post.