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

Wednesday, November 24, 2010

Happy Thanksgiving

On Thanksgiving eve I got the call first from Dr. W.  The skin he had removed showed no signs of melanoma and he felt comfortable now that enough tissue has been removed around the original site and as far as he was concerned everything looked great.  I saw him a week later and he removed the bandages and pulled my stitches and I haven’t had to see him since.  Dr. M called later that afternoon and had some mixed news for me.  One of the nodes he had removed showed microscopic traces of melanoma.  This was mixed news because it was a very small amount and only in one node.  Of course any was more than I wanted but this now brought the question of what to do next.  There are a lot of statistical oddities about melanoma.  I was about to come face to face with one of them.  The recommended action when one has a positive test in the nodes is a procedure where they remove all the lymph nodes from the suspected area.  This is an invasive procedure and statistically people who have this procedure done don’t live any longer than people who don’t.  Dr. M was recommending that I have the procedure done.  By the power of Google I had convinced myself that I wasn’t going to do it if the test came back positive.  Why subject myself to this if it wasn’t going to make me live longer?  I called my oncologist to get his opinion.  One of the things I like about him is I can always pick up the phone and call him.  I sometimes get to talk to him immediately or he always calls me back the same day.  He very strongly suggested I have this procedure done and thought I was being foolish if I didn’t.  I appreciated his directness but wasn’t convinced.  I called doctor M and we had about an hour discussion on Thanksgiving eve about all the studies I had read and how they collected the data and what it meant and what it didn’t mean.  I felt fortunate that he took this time with me.  I am sure he had plans on this evening that didn’t include discussing statistical analysis of patients who have had a lymphectomy procedure done with me.  You couldn’t tell however and I think if I had wanted to spend 5 hours talking about it he would have stayed on the phone with me.  It’s kind of funny in the end after over an hour of a statistics discussion he said to me that it boils down to this.  Cancer is bad, there is a high probability that since I had one positive node that I have more, and they should be removed.  Why would you leave cancer in your body knowingly?  I agreed and we scheduled the surgery for December 8th.  This journey was about to get much more difficult.  I wasn’t going to be able to hide this from my family anymore.  At this point only my older sister, my kids; my ex wife, two coworkers and the NG know about what I was going through. 

Sunday, October 17, 2010

SLN Mapping and more radioactive crap in my veins

The Sentential Node Mapping procedure is fairly straight forward.  They inject some radioactive crap in the area around where your tumor was removed, give it some time and X-Ray you to see what Lymph Node cluster that area is draining to.  They then go in and biopsy the area and send that off to the lab to check for microscopic traces of Melanoma.  If its negative then you can consider yourself lucky, if not then you have more choices about treatment to make and the probability of reoccurrence is considerably higher.  This was not so straight forward for me and my care team seemed a bit in disarray about what to do.  The mole I had removed was on my upper left chest, just below my collarbone and about halfway between my shoulder and neck.  The problem was that nobody could decide if I needed a head a neck surgeon for the biopsy or a surgeon who could do the biopsy if it showed positive in my groin or armpit.  The biopsy is done about an hour after the X-Ray so there is not a lot of time to make arrangements.  There seemed to be a dispute brewing among Dr. G who had originally removed the mole, the Head and Neck surgeon who I will call Dr. W and the chest surgeon who I will call Dr. M.  Dr. W felt that the mole should not have been removed before this procedure was done and that Dr. G had not taken off enough skin around the original area.  My Oncologist wanted nothing to do with the argument and I was left bouncing between the three trying to figure out what to do next.  I loved Dr. W.  He is retired navy and his office ran like the USS Enterprise.  If your appointment was at 10:15 then at 10:15 you were called back and you saw his nurse first then he followed directly behind.  Dr. M was pretty much the opposite.  His office always had a million people in it waiting to be seen and you may or may not get called back within a half hour of your appointment time and then you may sit in the room for another extended amount of time waiting to be seen.   One thing about all three of them is they are all brilliant men and extremely arrogant about how good they are.  I suppose it comes with the territory and you don’t become a surgeon unless you are that way.  We finally found a date when I was in town, all the Doctors were available, and the NG could be there to drive me home.  The actual procedure was uneventful.  I went and got shot up with radioactive crap, did the X-Ray and headed to the surgery center to see which doctor showed up.  The NG stopped and got a burger and tried to inhale as fast as she could in a show of mercy for how hungry I was at this point.  I understood; no point in us both starving.  My sister was also attending the surgery just in case some kind of a decision had to be made while I was under.  The NG is an RN so I certainly wasn’t afraid of any decision she would have made but there is something to be said for having family there and so far my sister was the only family member who knew what I was going through.  They had never met so this set up a kind of funny situation.  The NG was much like me, somewhat introverted and pretty quiet.  My older sister would be pretty much the opposite.  She is very outgoing and loves to visit with people and has the energy of a thousand people.  She is my hero and even as a little kid I always looked up to her.  As I was led back to get ready for surgery I had this funny vision of my sister and NG sitting in the waiting room staring at each other trying to make conversation.  Not sure why I thought this was funny but I did.  Much to my surprise both surgeons showed up and I was getting confused.  The X-Ray showed that the drainage had all gone to the nodes under my left arm so that was Dr. M’s area of expertise.  Dr. W was there I found out to remove more skin around the original area and to check manually for radiation in the nodes in my neck area with some gadget thing the looks for radiation.   The two Doctors came in and gave me the ole pre surgery speech and they made the NG and my sister leave so I could go back and get the show on the road.  My next memory is being wheeled out the door and seeing the NG and her smiling face there to pick me up.  I will always remember the smile on her face that day and have always wondered if she was just trying really hard not to laugh at me or was she really happy to be taking me home.  There was no sign of radiation anywhere in my neck area which was good news and he took about a ½ inch more skin from around the original area.  My scar now goes from just about my shoulder to just about my neck.   Doctor M removed 5 lymph nodes from under my arm and those samples would be sent to the lab for pathology testing.  More waiting for test.

Friday, October 1, 2010

Livestrong Day 2010 and the Tour De BBQ

One thing about people in Kansas City is we love our BBQ.  On October 1st I attended the second annual Tour De BBQ which is an event where people ride their bikes from BBQ restaurant to BBQ restaurant getting small samples along the way.  Me and my older two children decided this would be fun and I invited the new girlfriend (NG I will call her) to join us.  My kids had not met her yet and this seemed like a good way to introduce everybody.   It was a great day and we had a great time.  For those of you interested it will be October 2nd this year and will once again start at the Sprint Center downtown and I am sure even bigger than last year.  The turnout last year was more than expected so the lines at the rest stops for BBQ were very long.  Some people were really angry and yelling at the restaurants for not having enough food, service….  This really bothered me  as this ride was not about stuffing our faces with BBQ, it was about raising money for the University Of Kansas Cancer Center and the Livestrong foundation of Kansas City.  It was about spending time with fellow cyclist and in my case new friends and my family.  It was about raising awareness that there are 28 Million people living with this disease in the world.  There were 10, 30, and 100 mile routes and we picked the 30 mile route.  Riding around downtown KC with over 3,000 fellow cyclists was a blast and I look forward to doing it again sometime. It was also very inspiring to see all the teams riding in honor or memory of somebody.  Some of the people they were riding for would be at the start finish line or at one of the stops along the route.  I noticed them all and wondered if that would be me some day.  After the ride they had free beer and food back at the Sprint Center and we sat around and had some cold ones and visited until it was time for my son to head to the airport.  He was heading back to Alaska and I haven’t seen him since.  He is scheduled to be home late next week and I cannot wait to see him.  I always feel bad when I have to call him and tell him about my next surgery or treatment or whatever is going on.  I am sure being so far away is hard on him when somebody in the family is going through difficult times.  I also feel that he deserves my honesty and the truth about what is happening at the time.  We had to talk about what I expected of him should I get sick and also review what to do should I move on to whatever is next.  This was a very odd discussion to have with your son and I think it freaked him out but it had to be done.  It was a great day and the kids seemed to be hitting it off with the NG which was a huge relief to me.  She had become a really important part of my life and even though I suggested she and I stop seeing each other until my health situation was a little more understood she stuck it out with me. 
I was feeling pretty good at this point and the results of the PET scan were favorable so I was thinking I had dodged a bullet and only had one more test to go that would check to see if I had any trace amounts of melanoma in my Lymph Nodes.  If it was negative then I was home free and the chances of reoccurrence were greatly reduced.  I wouldn’t be so lucky but on this day I didn’t even give that a thought. 

Monday, September 20, 2010

Meet The Oncologist

The next few weeks seemed to fly by and a lot was happening, and I was still traveling for work.  My Oncologist is Dr. D. He is a great guy and very patient with me.  I don’t care if I ask him 100 questions he takes his time and is always willing to spend as much time with me as I want and I never feel like he is trying to run me out of his office.  I would go home and Google all these melanoma studies and treatments.  On my next visit I would ask him questions about what I had read and we have had some great discussions and I have always felt he was direct and honest with me about my situation.  On my first visit he scheduled me for my first PET scan and told me that this was very important as it would show if the cancer had spread to any of my body organs.  The worse part of the PET scan is the shot you get beforehand.  The tech who gives you the shot is wearing a led apron and special gloves and a face shield.  The syringe is encased in led to limit the radiation exposure for all involved.  I think it is ironic that the tech dressed in led, takes the syringe encased in led, and shoots this crap into my veins.  Just seems wrong.  They made me sit in a dark room for an hour I think while this stuff worked through my system and then do the PET scan which although boring not much of an event.  A week later I saw Dr. Davidners number on my caller id.  I answered it and immediately knew it was good news.  He sounded really chipper and happy and gave me the good news that there was no sign of cancer having spread to any of my vital organs.  It wasn’t until I got off the phone that I thought of why he sounded so happy.  Here is a guy who has to give people the worse news imaginable every day.  I could tell he enjoyed giving me good news god knows I enjoyed hearing it. 

Saturday, September 18, 2010

But Isn’t That A Cancer Doctor?

As I waited for the call from Dr. G on my lab results I must admit I had done a little Google research on melanoma.  What I saw was scary and there was no way I had this disease.  I would feel sick, it would look worse; I would have a family history…..  There was just no way I had cancer, let alone this especially deadly form of it.  This journey has been marked with a lot of moments I will never forget and I imagine most cancer patients can tell you when and where they were when they got the news.  I knew that there was something wrong as soon as I heard Dr. G on the phone.  His playful joking demeanor was gone and he had a sound of concern in his voice.  He gave me the news and my head just started spinning.  The mole had indeed tested positive for Melanoma and it was much thicker than he thought.  It was nearly 4 mm thick, ulcerated, and some other stuff that was all bad news.  He said he had taken the liberty of calling an oncologist for me and discussed my case with him.  He said I needed to call and make an appointment asap.  At this point I said to him “But isn’t that a cancer Dr” as if I still couldn’t process what was happening.  The next thing I did was phone my older sister and I gave her the news.  I was so upset and to be honest terrified.  I still didn’t know much about Melanoma but what I did know was that the results of my lab test indicated that there was a very high chance that cancer had already spread to my lymph nodes and possibly my body organs.  The average life expectancy for a melanoma patient once it spreads to your body organs is about 8 months and it is fatal nearly 100% of the time at that point.  I can still remember hearing my her voice on the other end of the phone as I was losing it.  She kept it together and her voice was so soothing and reassuring.  She told me it was ok to be scared and that it was going to be ok.  She was going to be there for me and we would just take it one Dr appointment at a time.  That is the moment that I will already remember from that day.  Family is everything.

Wednesday, September 1, 2010

The Doctor Visits Begin

Upton returning home I noticed that this mole on my chest was starting to discharge some fluid and seemed to have gotten bigger and darker. I had no idea what melanoma was or looked like but this thing was leaving stains on my undershirts so I figured I needed to do something about it.  I called a local doctor and made an appointment and I just figured he was going to slice this thing off of me and that would be it. I hadn’t seen a Dr. in over 10 years (stupid) so I did not know this guy at all. Before I even got my shirt off his nurse asked me if I had a history of skin cancer in my family.  I told her to my knowledge no and she left.  Dr. M came in and looked at it and asked me the same question.  At this point I am getting a little freaked out but still waiting for him to grab a scalpel and cut this thing off of me so I can go on with my day. Dr. M comes back in and tells me this thing does indeed need to come off but he can’t do it and suggest a plastic surgeon for me to go and see.  Well this is where I got a little lucky.  My older sister once worked for a plastic surgeon in Kansas City so I called her and she got me an appointment to see him.   A week later I went to see Dr. G at about 4:00 on a Thursday afternoon.  At 6:30 the next morning I was checking in at the surgery center to have it removed.  I later found out that he was leaving later that morning for Romania to do some work for a charity and had got me in before his flight.  After removing the mole he tells me the frozen section didn’t look good but it would be sent off to a lab for testing and he would let me know when he returned what they found.  He said not to worry because he felt he got it all and he didn’t think I had anything to worry about.  A quick note about Dr. G.  He is the nicest man.  He got me in before his trip on about 14 hrs notice and called me the day he got back in town with the results from the Pathologist.  He followed my case for some time and still gets updates from my Oncologist. 

Sunday, August 15, 2010

Life Is Good-August 2010

In August of 2010 me, my youngest daughter and a friend of hers headed down to Key West for a week for vacation.  It was a great vacation and I spent the week smoking Cuban seed cigars, drinking at Ernest Hemmingway’s favorite bar, and chasing six toed cats around his old house. I hung out outside Jimmy Buffets recording studio hoping to drink a beer with the king parrot head himself. It never happened but the thought that it might was kind of cool.   We did the Dolphin thing, went snorkeling, and the daughter did the parachute behind the boat thing.  I spent hours drinking cold ones and reflecting on how after being divorced for 10 years I felt I had my life back and really felt good about everything in my life. My oldest has settled in Alaska and is as happy as I have ever seen him.  He was living his dream working on a fishing boat catching thousands of pounds of Salmon and Halibut a day.  I hate that he is so far away but knowing that he is happy makes it easier.  A couple of months earlier I had gone to San Diego with my middle daughter and granddaughter and watched her run her first marathon and raise thousands of dollars for a Lymphoma and Leukemia charity.  She has a great job and was working hard to be a great mother to my granddaughter.  We went to Sea World and got to show my granddaughter the ocean for the first time.  We had a great trip.  Watching her finish that marathon was amazing and I was so proud of her.   My youngest was preparing for her senior year in high school and I was so proud of the young woman she had become.  Her and her friend were  both 17 at the time so I was able to pretty much let them do their own thing around Key West, but I did follow them from time to time just for peace of mind.   I did have to run them off of Duval Street one night; it gets a little freaky when the sun goes down.  I had recently entered the world of online dating and for the first time in many years was dating again.  I had met some very nice women and had been on dates with a few of them.  I was excited to get back home to go on my first in person date with somebody who really had my interest.  We did eventually go out and became an item fairly quickly.  She was just perfect. A cyclist like me, had kids the same age as mine, and we really hit it off. My career had taken an interesting turn when I was asked to join a project with the company to upgrade some of our software. So for two years I will commute from Kansas City to Princeton, NJ two to three weeks per month. I love going to New York and this job would allow me to go quite a bit.  I love my job and enjoy what I do.  The travel gets old but I work with some great people and love the challenge.  I had been working on repairing my relationship with the church and was attending again.  Life was good.