Dear 16 Year Old Me

This video is difficult to watch but if you take 5 minutes out of your life and forward this on to the young people in your life it could be a lifesaver.    I want to highlight a few points for those who don’t have time to watch it.  Chelsea thanks for posting this on your blog, I hadn't seen it.  Very Powerful.

·         Over one million new cases of skin cancer diagnosed each year, outnumbering the total number of other cancers combined

·         Most common cancer killer of young women,  more common than breast cancer in ages 29-34

·         More than one person dies each hour from melanoma

·         Advanced melanoma has no effective treatment

·         Avoid tanning salons: 15 minutes is equal to a whole day’s exposure at the beach

No Mas

From a process standpoint the self administered shots were going well.  It only took about 5 minutes to mix the two bottles of powder with two bottles of water, suck it all into one syringe, change needles and shoot it into myself.  Not very complicated.   Physically I was doing ok.  I was tired and all I did was work and sleep but that’s kind of what I expected.  The fatigue was overwhelming at times.  Very difficult and no amount of caffeine seemed to help.  I fell asleep sitting in the car in the garage after I pulled in, the Taco Bell drive through (not a Livestrong day) and at my desk.  I could sleep anywhere and on my trips back and forth to Jersey I was asleep before the wheels even left the ground.  That I could deal with but the mental strain was becoming much more difficult to fight through.  My memory was pretty much gone and my ability to process information and data was really going downhill.  A week ago today I was preparing to come to New Jersey for work this week.  Now this is going to be a two week trip for me and I needed to bring enough interferon for 5 treatments.  I was going to need two bottles of powder and two bottles of liquid for every treatment.  It sounds simple enough, especially for an accountant who has spent a good portion of his career working as an analyst.  I stared at the box of little bottles for about five minutes before I finally had to put the bottles together in groups of four until I have 5 groups.  I felt like an idiot.  This really wasn’t very complicated.  I called my Oncologist on Monday of this week and left him a message that I had had enough and was either going to have to go on disability or stop treatment, I couldn’t function at work any longer or be productive.  I knew that I wouldn’t be able to take a break and go back.  He called me back and we had a good discussion about where I was at and how I was feeling.  He supported my decision and said it was time for me to feel human again.  I agreed and skipped my treatment that night.  I haven’t put any of that crap in my veins since.  I called my kids that evening and told them of my decision.  My girls seemed concerned by the news and I look forward to getting back home to visit with them in person.  I think when they see how much better I feel they will understand.  They think this stuff was going to save my life, when that’s not really what it does.  I let the rest of my family know after I told my kids and they were all very supportive.  I have been off for 5 days and I cannot tell you how much better I feel.  Mentally I felt better almost immediately.  My memory is much better and I can function at work again.  I don’t have any regrets about starting Interferon, not do I have any regrets about stopping.  I did everything I could and fought like hell to stay on it, but just couldn’t do it anymore unless I went home and spent the last 8 months doing nothing.  Maybe it would have gotten better, maybe not.  In the end, this week I just lost the will to fight this crap anymore.  Once I had given up this fight was over.  The one regret I do have is that I didn’t start antidepressants at the start of this treatment.  All the doctors I talked to say I should, everybody I met who had been through this said they had to take them but I was determined I wouldn’t need them.  Would it have made a difference?  Who knows, I don’t think so but it may have helped me deal with it better.  I also don’t think the NG kicking me to the curb was the reason either.  It didn’t help my attitude any but didn’t make me less willing to fight through this.   I am at peace that I did everything I could and it really became a quality of life and risk/reward decision. 

Angels Walking Among Us And Treatments Suck

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.
Lance Armstrong



Interferon treatments were just as bad as the doctors had warned me.  The first month I was prepared for, what came afterwards I was not.  Going to the infusion suite will humble you very quickly.  As sick as I was there were people in there who were in much worse shape.  I would go in every day, get weighed and do the blood pressure thing, and go get hooked up.  I would get a new IV every Monday and they would also draw blood every Monday.  You would think that they could do these two steps together but no luck.  I have terrible veins and they never got a vein on the first try.  I hated Mondays and always felt like a pin cushion when it was over.  They would leave the IV in all week which was nice.  I would get a bag of fluids, a bag of Interferon, and be sent on my way.  Two hours later I was as sick as a dog hoping that I would go to sleep so I could miss most of the side effects.  My youngest daughter was my lifeline during this time.  She would get me my meds, bring me food and drink, …..   She was wonderful and I am sure it was scary for her to see me in this condition.  To her credit she never let on that she was afraid but I am sure she was.  I also think she was relieved when the NG would arrive and relieve her from duty.  They kind of tag teamed taking care of me.  My older daughter would come over when she could and brought my granddaughter to see me sometimes.  She always cheered me up and her energy is contagious.  I love them all and seeing them reminded me why I was doing this treatment.  I am such a blessed man.  I was able to work some while I was going through this treatment, but towards the end it go more and more difficult.  One of my favorite memories was about halfway through my treatment we got a foot of snow one night and had 40 MPH winds and huge drifts.  There was no way I was going to be able to shovel the driveway and make it to my treatments but at about 6:00 am the next morning I heard somebody shoveling and looked outside and there was my ex wife and her friend Dave shoveling my driveway before they both went to work that day.  It was 5 below zero and the drift in my driveway was at least two and maybe three feet high.  As you might gather from the Ex part in ex wife we haven’t always been very good to each other.  Trust me, she doesn’t owe me anything.  She is mid 5 ft range and about 100 lbs soaking wet.  She looked so funny all bundled up and looked like the kid from “A Christmas Story” as she was shoveling.  This actually wasn’t the first time she had shoveled for me this winter but by far this was the worse conditions.  She has been very good to me during this I and I appreciate it.  The problem I had now is that they don’t usually plow my street for a few days after a snow so there was no way I was going to make it down the street.  One of my sisters called and I was telling her how I didn’t think I was going to make it to treatment because my street was impassible. This was very distressing to me as I really wanted to finish this treatment and if I missed I would have to go in on a Saturday and take get a treatment which meant I wouldn’t get my normal weekend recovery time.  A couple of hours later I get a call from the fire department and my sister had called the city, the police, the public  works, and finally the fire department where she found a sympathetic  ear and they were going to come over and plow me a path to the main road so I could get to my treatment.  He asked me what route I took to get there and sure enough they came over and plowed me a path so I could get to treatment.  I really appreciated everything that was done for me that day and will always remember it.  As somebody who hates asking and accepting help this day was very humbling.  I made it to treatment and the ladies at the infusion suite were surprised to see me.  I wanted to mention them during this post.  They really are angels who are walking among us.  The compassion they show all day every day was simply amazing.  The nurses always had a smile on their face and would sit around and joke with you or sit there while you whined and complained.  They have to get sick of hearing it, but you can’t tell.  To be honest I felt guilty complaining in there.  There were so many really sick people.  Don’t get me wrong, I had my cross to bear, but mine seemed smaller than some others.   I think god there are people who can do jobs like this but I don't think I ever could. 

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.