As the title says this blog is one man’s effort to make sense out of his journey fighting melanoma. I have enjoyed reading some of my fellow melanoma warriors’ blogs and thought it might be an interesting way to share what this journey has been like for me. If you find this interesting great, if not that’s great also. Selfishly this is more about me getting this out and moving on from being a cancer patient to being a cancer survivor.

Let’s clear up a few things. Yes, I know how to use spell check and no I don’t always use it. I majored in accounting, not english. I have always been a below average writer, which is why I find the therapeutic value of doing this surprising. I think for this blog to make any sense you pretty much have to go to the archive and start from the beginning which is titled “Life Is Good”

I am not a doctor or medial professional of any type. My blog is not endorsed by any medical professional or facility mentioned in it. Every decision I have made about my care was done after careful consultation with my medical team. Decisions I have made were right for me but should not in any instance be considered right for anybody else. I don't recommend taking medical advice from an accountant.

Key West

Key West

Sunday, July 31, 2011

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? 

Saturday, July 23, 2011

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

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...

Saturday, July 16, 2011

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

Wednesday, July 6, 2011

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. 
Gallery ImageThe 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.