Love On The Rocks

I have referenced the New Girlfriend (NG) many times during my various posts.  She was simply a blessing who appeared in my life at a time I desperately needed her.   She scared me to be honest and even had a skeptic like me thinking that maybe god does work in mysterious ways and had brought her into my life for a reason.   She is a very loving and caring person who lives life at full throttle.  We really got along well and had so many of the same interest.  We both are cyclist and love being outdoors.  Our children were the same age, both have one granddaughter…  I felt we were perfect together.  She also is an RN who has spent most of her career working in ERs.  After I was diagnosed we talked about how she really should run away but to her credit she didn’t want to.  I really don’t think either of us really thought I was going to end up as sick as I ended up being.  She was there for a lot of my Dr. appointments, and all my surgeries.  Her smiling face was the first thing I saw as I was waking up besides the nurse who was always trying to make me choke down crackers and 7-Up.  She helped me when I got home and cooked for me, cleaned my house, let the dog in and out, ran to the store, managed my meds, changed my dressings, drove me around….  She was wonderful and I could never have made it through without her I don’t think.  Oh and she lives 3 hours away from me and would drive up to see me all the time when she wasn’t working.  She came to spend a weekend with me in New Jersey and we went to NYC and did the tourist thing.  We have a lot of great memories in a short amount of time.  As I was going through my treatments I could tell the strain was getting to her and my inability to really enjoy life during treatment was becoming difficult to manage for her.  I mean why drive three hours to see me sit around and watch me rest, all the while bitching about how shitty I feel.  Not much of a life for her.  A few weeks ago I got my first Dear John via e-mail.  Remember when we use to break up in person so we could at least call each other names as our relationship was ending?  Honestly I have absolutely no hard feelings towards her and I have sent her a link to this blog.  I hope she reads it and laughs and  hell she probably can fill in some gaps for me.  Do I wish our relationship had ended differently?  Of course I do, I felt the e-mail breakup was cold and to be honest I was more hurt by that than anything.  I am sure this was very difficult for her to do.  I told her that if she was my sister or a good friend I would tell her to do the same.  The 5 year mortality rate for somebody with my level of cancer isn’t very promising.  Now I expect to be below the line on the mortality graph I printed off of Cancer.Net, but let’s be honest I may not be.  Why would she want to subject herself to this over somebody she has just met?  I tell myself that the closer we became the harder it was for her to stay with me, fearing what may be coming.  That’s how I make sense out of it anyway.  The truth is most likely something simpler.  This can be my revenge on her, a picture of her stuffing her face with BBQ during the Tour De BBQ.  If I can find the picture of her standing next to the naked cowboy in Times Square I will post it next.

Livestrong, My Angel Tim and Cancer Math.

Livestrong Manifesto
http://www.livestrong.org/Who-We-Are/Our-Strength/LIVESTRONG-Manifesto

I have posted two links above that I think all cancer patients and their support group should check.  One is the link to the Livestrong manifesto.  I have the first paragraph stuck the wall in both my offices and read it often.  It reminds me that I cannot sit around and feel sorry for myself.  The second is the Livestrong video shot by Lance Mackey.  Now I will admit I am a bit of a Livestrong video addict.  I think I have seen them all and this one really strikes a cord with me.  Ironically my son has met this guy on his travels in Alaska and somehow ended up hanging out with him for a day. 

I was always a Lance Armstrong fan.  I think what he did in coming back from cancer and winning all those Tours was simply amazing and you cannot overstate what an accomplishment this was for a guy who had testicular, lung, and brain cancer at the same time.  Simply amazing and very inspiring.  He then started this organization to help people who were stricken with the same disease.  I find their web site very informative and helpful.  I have reached out to them directly for help on more than one occasion and they have been incredibly helpful to me.  One of the best things they did for me was they turned me on to an organization called Imermans Angels.  It’s simple enough.  They match cancer fighters with cancer survivors who had the same type of cancer and treatment.  It’s one on one and in my case all done via e-mail.  I had been spending a lot of time looking at Cancer Math .Net check my chances and was really getting down and feeling a bit overwhelmed.  The livestrong people suggest I try registering and try talking to another Melanoma survivor and see if that didn’t help me understand that those statistics mean nothing to any one member of the sample pool.  Now as a numbers geek I understand what those statistics really mean but they were right.  The imermans people set me up with my angel whose name was Tim.  He is a nearly 10 year melanoma survivor and hearing from him made a big difference for me.  My family and friends were so supportive and wonderful to me but there is just something about this journey that only people who have been through it can understand.  I will paste a link to the Imermans site below and if you think it can help I strongly recommend it.  I hope to be able to volunteer with them and be of assistance to somebody else some day.  I maybe have heard from Tim four or five times in total but it made a big difference in my attitude. 

http://www.imermanangels.org/get-cancer-support/cancer-partner-resources/cancer-survivors.php

What The Heck Is Interferon

Interferon is a word that did not exist in my vocabulary until I was diagnosed with this disease.  I had been doing some research on what treatments were available and was scared to discover that this and surgery was pretty much it.  The tricky part about melanoma is that although you have surgery to remove the tumor and any traces of melanoma from your body, it is most likely still in your system somewhere waiting for the opportunity to attach itself and grow into another tumor.  For somebody at my stage Interferon is pretty much the option.  There are lots of promising trials for different types of treatments but for various reasons I didn’t qualify for any of them.  I wasn’t sick enough, was too sick, tumor was in wrong spot, I had dark skin……  Whatever!    I had spent hours and hours researching interferon and was very torn about doing this treatment.  The facts are not very encouraging.   The Kirkwood study showed that in about 30% of the cases interferon delayed the reoccurrence of melanoma by just less than a year.  When the study was first done they thought it actually prevented reoccurrence in some cases but as time has gone by that has proven to be a very small number and the data really doesn’t support this claim.  Now here comes another one of the oddities about Melanoma.  Once again people who took interferon on average don’t live any longer than people who don’t.  There are a lot of possible explanations for this but you have to wonder why you would subject yourself to this treatment if it’s not going to extend your life.  In most cases it’s a 12 month commitment with the first month being administered via an IV 5 days a week, then you self administer at home the next 11 months three days a week by giving yourself shots.   Basically as I understand it your immune system goes nuts trying to get you healthy again and hopefully kills any remaining melanoma in your system.  The side effects are brutal.  Basically it’s like having the flu every day times 5 for the first month, then just the normal flu after that and feeling like you just finished a marathon.  I discussed this with my Oncologist, and met with Dr. Doolittle (not making that up) at the University Of Kansas Cancer center for a second opinion.  Dr. Davidner was very indifferent about it.  He said my case was not clear cut at all.  At this point he knows me well and that I had researched this extensively and he actually suggested I get a second opinion.  At the KU Cancer center Dr. Doolittle was much more decisive.  He felt strongly that I needed to do this treatment and warned me that with my proposed schedule I would never make it 12 months but that there was some benefit even if I just did the first month of high dosage.  I thought he was crazy and just didn’t know how tuff and stubborn I was.  He said that since my job is very cognitive that it would be very difficult to do 12 months.  I left his office and gave myself a deadline to make a decision by.  I headed to the airport from his office for another flight to Jersey and before I had landed I had decided that I was going to do this treatment.  In the end I just wanted to feel like I was trying everything I could.  I felt to not try and go into “Observation” mode was giving up and showed weakness on my part. I thought of my family and how to not at least try this was letting them down.  I thought of my children and especially my granddaughter.  I owed it to myself and to them to try.  Are those good reasons?  I don’t know.  I have tried to make all my decisions during this based on scientific fact and data and not emotion.  I think in the end this was an emotional decision.  So on January 17^th me and the NG headed to the Kansas City Cancer Center “Infusion Suite” and I took my first treatment. 

More Surgery and Spreading The Joy Around

Like most families mine has not been free from the touch of cancer.  My mother has lost 5 sisters to breast cancer and I have always supported cancer charities when I could as a result.  Having to call my brother and other sister with this news was difficult, calling my mother and father was hell.  I just felt like I was spreading my misery to other people.  Everybody was very supportive and said all the right things but I know my news was concerning and I had most likely scared everybody and caused them stress they really didn’t need.  Surgery day came and this time the NG had some additional company.  Not only was my sister there, but my mom and dad had come up for the night before and went to the hospital the morning of my surgery.  I really don’t have a lot of memories of that day.  I guess it’s the anesthesia but I have almost no memory of the time before surgery and again my first memory after surgery is seeing the NGs smiling face as I was trying to figure out where the hell I was and what had happened to me.  I remember the family coming back to see me post surgery and then I remember being wheeled back out to car for the ride home.  That’s pretty much it until the next day.  Post surgery Dr. M went out to talk to the family and gave them the low down and answered a bunch of questions from my folks.  He was very patient with them and answered all their questions.  He always had a med student with him and I hope that she paid attention to his bedside manner.  He is a brilliant man and by all accounts one of the top surgeons in the city, but what I will always remember is how willing he was to talk to me and answer my questions.  The next morning me and the NG  both got a big shock when we went to change the dressing under my arm.  I had a drain which I expected but when the NG removed the dressing she gasped audibly and I could see a look of shock on her face.  Now when a RN who has worked the ER for most of her career gasps you have done something.  Nobody had warned that after surgery I would have a hole where my armpit used to be.  By a hole I mean a piece of flesh was gone about the size of a grapefruit.  It wasn’t that big a deal but it would have been nice to have been warned.  The recovery from this surgery was a little slow and still to this day you could drive a fork into my armpit and I wouldn’t feel it.  The hole has filled in a little but it will never be 100%.  A week later I got the fateful call about lab results and this time it was great news.  All the nodes tested negative for melanoma and I was as best they could tell cancer free at this point.  People have asked me if I am sorry I had that surgery done and the answer is absolutely not.  As cancer patients we can only make decisions about our treatment and care based on what we know at the time.  There are no do over’s in this battle.  It was the only way I would know if the cancer was all gone and if I had to do it again I would make the same choice.  Luckily for me the NG had a good friend who was a physical therapist and she gave me some exercises to do that would help my arm recover.  Two weeks post surgery I had my drain removed and about a month post surgery I had about 80% of my range of motion back in my arm.  I have another nasty scar from the battle but other than that have healed up nicely.  I have to wear a compression sleeve on my left arm when I fly and have to always be on the lookout for Lymphedema but so far no real issues.  My left arm is off limits for shots, IVs, and blood pressure test.  I think I am supposed to avoid hot tubs as well which is going to be difficult.  Most melanoma patients have had this or a similar procedure done.  I consider myself lucky that it wasn’t my neck or groin area and extremely fortunate that the only cancer I had was microscopic and only in one lymph node.  My best wishes to everybody who received much worse results to this test than I. I know how lucky I am.  This battle is never really over as I am learning.

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 8^th.  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. 

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.

Livestrong Day 2010 and the Tour De BBQ

One thing about people in Kansas City is we love our BBQ.  On October 1^st 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 2^nd 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.