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, 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.