Dr. D puts on his game face and enjoying a beautiful day.

Yesterday was a great day. The weather was absolutely beautiful. The temperature was in the mid 70’s and not a cloud in the sky.  I had an appointment with my oncologist in the morning and was anxious to see him.  Last week my PET scan came back clear but there was a suspicious spot that they really couldn’t see on the scan.  He told me over the phone that it wasn’t a big deal he wanted to examine me anyway just to be safe plus I hadn’t seen him since I stopped interferon treatments so I wanted to ask him some questions as well. I have learned over many Dr.  visits that Dr. D has a game face that he puts on when things are getting serious.  I had seen his game face a few times before and I recognized it right away when he walked in.  Usually he is really talkative and we visit about whatever before we get to the point of my visit.  My sister actually pointed it out to me on one of my first visits to see him.  So immediately he ask me to remove my shirt so he can examine the area in question which is just under my left arm in the same area that I had surgery in December.  He examines me, looks at my scan, examines me again, sits down at a desk, and lets out a huge sigh of relief.  He tells me that the area in question is the exact same spot that I have had to have drained once before and most likely that is all it is again.  He said he was relieved and that we are still in the driver’s seat which is great news.  It was kind of a moment for me to be honest.  I was so angry at him last week over how long it had taken him to get back to me about my scan but I was reminded that we are a team and the fact that he was so concerned meant something to me.  I wasn’t upset that he didn’t let on last week how concerned he was.  There was nothing that I could have done and there was no need to worry me.  Now this is not great news that I had a spot that was “Hot” on the PET scan but the location is important.  Should it be a tumor it’s in the exact spot when I had it before so it wouldn’t be spreading, it would be leftover from the first occurrence.  It also would be at the very early stages and as he said this is reason why we do scans, to catch things early.   I hope that makes sense.   The worst news I could get is that cancer has spread to another spot on my skin or internally to one of my organs.  That is definitely not the case right now and everything beyond that is just news.  So I have to see my surgeon again in a couple of weeks and see what he thinks.  I seriously doubt he will see the need to open me up again and the fact that Dr. D said it wasn’t any big hurry is an indication that he also doubts it also.  He always remembers that I travel for a living and ask my travel schedule. When I told him I wasn’t scheduled to be home until the week of June 13^th he said that would be fine and there was no need to change my schedule.  In the past he has not hesitated to tell me when I needed to change my schedule for a test or procedure.  We ended the appointment with stories about our favorite delis in New York.  He swears the Pastrami at Katz’s deli is the best in the world and if I haven’t been there I haven’t been to the best.  I have always thought of it as a tourist attraction ever since it was in that movie.  Apparently I am very wrong.   Anyway, something else to do on my next trip into the city.  Wonder if Hopstop has directions because if they don’t I won’t find it.  So that’s that latest on the medical front.  I continue to feel great.  I get a little stronger every day my hair has started growing back. I never went bald but my hair thinned considerably to the point I could see my scalp through my hair.  The worst part was the colored hair was all that seemed to fall out.  It’s definitely growing back and my son made my week by saying that it looked like my hair was returning to its old color, even less gray hair than before I started treatment. 

After my Dr appointment I went to have lunch with my daughter Jenny.  We went to one of her favorite places on the Plaza, the Kona Grill. We sat outside and both ate sushi. There is something about hanging out on the plaza on a bright sunny day.  If I worked downtown I swear I would live down there somewhere.  We visited and had a great time.  I have become a big sushi eater and I have Jenny to thank. She got me started on it a few years ago and I love it.  After that I came home and got on my bike.  For those of you who have ridden with me before I did the buffalo route.   I rode out and saw the buffalo and rode back. I  Hardly my old pace and that use to be a good warm up distance.  In the old days I would ride out to see the buffalo and keep going around the lake which is a hilly mother and I love riding out there.   Not only is there a large heard of buffalo but there is also a heard of elk.  In the fall as I am riding around the lake I can hear the elk bugling for miles.  It reminds me of living in Colorado.  And best of all there is almost no traffic so I can zip up and down the hills and not worry about being run off the road. The hills will have to wait but I will be out there soon.  My goal is to ride a little every day while I am home.  I could have ridden the hills yesterday but I was afraid I wouldn’t be able to ride today if I did.  On the way home I ran into my son who was jogging and we had a nice visit as well. He is due here pretty soon and we are going to go for a short ride.  Last night was Sara’s last piano recital. Her recital went well and she played beautifully.   Next year I will miss hearing her playing the piano.  I think I am in total denial about Sara these days.  I don’t think it will hit me that she is 18 now and leaving for college until the day comes for her to leave for Ft. Collins.  I have a few more months to pretend she is still 6. 

Great News Today

First off and most importantly I wanted to share with everybody that my latest scan shows no signs of cancer anywhere so that is excellent news.  It was an extremely long week since I had my test done last Thursday and I was really disappointed in my oncologist this week.  For the most part he has always been very responsive and timely in sharing test results.  This week it went badly in my opinion.  I really should not have to wait 7 days for my test results when others are getting them within hours.   At some point I will have to do a post ranting about how hard it is to get test results and copies of my records.  I keep my own chart and have copies of most test I have had done.  Some places are really good about it and others are a pain in the ass.  I will be looking around before my next PET scan to find something better than the experience I had this time.  I won’t get started as I think that is a rant for another day.  I am still cancer free nearly 9 months after initial diagnosis and I don’t take that for granted.  Others are not as fortunate. 

May is a crazy month in my family.  All three of my children and one of my sisters were born in May.  This year we had the added bonus of two high school graduations, one for my daughter and one for my niece Erica.   On Sunday one of my nephews will be walking the hill (graduating) from the University Of Kansas.  In a true stroke of genius he immediately will enroll in grad school and somehow got a job in the athletic department and they will pay for his schooling.  I have offered numerous times over the last four years to switch jobs with him but so far he isn’t interested in my gig at all.   I am very proud of all of you and am excited for all your futures.  There will be lots of family around this weekend and I am looking forward to seeing everybody.  My son is still in town and I am looking forward to spend some more time with him before he heads back to Alaska.

I have what I like to call the stuck in Newark blues tonight.  My flight was scheduled to leave at 8:50 and has now been pushed back to 09:50.  This has been the trip from hell.  Flight canceled Sunday, along with the next two flights to Newark.  On Monday I couldn’t get here before 10:00 pm which with delays turned out to be midnight.   Now my flight home is going to be late.  So I will land about 1:00 am EST as it’s scheduled now.  I hope there are not many more delays or the Newark Marriott will have an extra guest tonight. 

That is my ex wife and my youngest daughter in the picture below and it was taken last week at her graduation. Her mother and I have had our issues over the years but when it came to raising our children we were always able to put whatever our issues were aside for what was best for our children.  Being a divorced parent is difficult, and I imagine being a child in a broken marriage is even more difficult.  We have successfully raised three great children and I think we both can take a certain amount of pride in that.  i can't believe in the fall I will be an empty nester. 

A Huge Thank You and What Is Next?

First off I really want to thank my brother in law Chris.  He is going to show the Dear 16 Year Old Me video to his high school health sciences class before school lets out.  Other than beating this disease personally what I want more than anything is to prevent somebody else from getting it.  Getting that video shown to as many people as we can is a step in that direction.  Thank you again Chris. 

I have received a lot of feedback from people about my blog.  I want to thank everybody who wrote on my facebook wall, commented on the blog, and e-mailed me directly.  I was really surprised by the emotional reaction some people had.  I guess since I lived it I didn’t have that reaction as I was writing it.  I appreciate the comments and messages.  It means the world to me to hear people have read my blog and learned something about melanoma that they didn’t know.  The intent is not to make anybody cry or draw attention to myself.  I do it selfishly because it makes me feel better for some reason and I feel a responsibility to try and prevent other people from having to go through this.  The worse side effect I still have is a pretty bad case of “Chemo Brain” but think in time I will recover.  Chemo brain is basically loss of short term memory, lack of ability to multi task, stuff like that.  Some of it will never go away; some of it will hang on for 5 years.  My hope is that since I was on Interferon which is a protein that I will recover 100%.   

The most common question I received was what is next for me?  Well, to be honest I am not sure.  I won’t see my oncologist for another two weeks but to the best of my knowledge at this point the plan is this.  I will continue getting PET scans every six months for the next year and a half.  This is the most important test I do, if melanoma has spread internally this is the test that will show it.  This test and ones like it have caused a new word to be created.  Scaniety and its very real.  My next PET scan is Thursday morning.  I will get more radioactive crap in my veins, an hour sitting in the dark because I am too radioactive to be around healthy people, and another slow trip through the tube of strange noises.  Scaniety to me is the fear of the results of your scan, and the anxiety you feel leading up to and after your scan.   I usually get my results in a few days and I will be a nervous wreck.  When my cell phone rings and I see Dr. D on the caller id I will feel like getting sick.  Last night I didn’t sleep thinking about the scan.  My hope is that I am so tired tonight that I sleep better.  I will take whatever news comes my way and we will keep moving forward.  Just as important as the PET scan are my visits with the dermatologist.  I see Dr. Allen every 90 days, it was every 60.  He really is the first line of defense and if I have any questionable spots he removes them.  So far he has taken 4 or 5 questionable spots off of me and they have all been negative for melanoma so we are off to a good start.  I don’t think I have mentioned him before but he has also been a great resource for me.  He spends a large amount of time on all my visits to his office teaching me about what looks good and what looks bad.  I plan to see my oncologist the first week of June and see if any of these schedules will change but I don’t think they will.  I also hope to talk to him about what if anything I should do next.  My guess is as long as the PET scan is clear the answer is nothing.  I am officially in “Observation Mode”

Again, I feel great.  My son is in town from Alaska and he and I had a great time Saturday riding bikes.  He is the reason I am on a bike, he gave me one of his hand me downs about 5 years ago.  Riding my bike is very relaxing to me, even if it is 1/3 of the distance I was riding last year at this time.  My legs felt good, my lungs hurt like heck.  My older daughter started a new job today and she reports it went well.  I am so proud of her.  We had dinner on Saturday night, I grilled salmon and asparagus, two of her favorites.  My baby is graduating from high school this week.  Hard to believe.  Where did the time go.  We got the date she moves to Fort Collins, CO last night.  On August 17^th she is due at her new dorm at CSU.  I am very happy that she is going to get to go out there for college.  She was born about 10 miles from where she will be living again.   I guess the world is round.  That is me and her mom in the picture at the top of the post. 

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.