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