Birthday Recap and Doctor Frustration

Thanks again for all the birthday wishes.  For many years I have hated birthdays.  Getting older seemed so overrated.  Well after the year I have had I loved turning a year older and 47 sounded great.  In fact I can’t wait to turn 50 in a few years.  I am feeling a good kegger coming on.  Seriously the new perspective on life I have gained this last year has been the most valuable thing to come out of this battle.  An old family friend posted on my wall this week that her husband Roy who has been fighting a battle of his own says that happy birthday is a victory song for cancer survivors.  I couldn’t agree more.  Monday night the 13^th I went to have dinner with my Sister and brother in law and my three nephews were also there along with my youngest daughter Sara.  I love being an uncle and was so glad to see them.  On my birthday my girls and I went out to dinner and then came back to the house for cake.  The girls were wonderful and my granddaughter made me a card that is proudly displayed on the refrigerator.  I swear she has grown a foot since I had seen her last. 

I have been home all week and it’s my first full week at home since the second week of April.  It is so nice to spend some time with my girls and sleep in my own bed for a week.  I have put about 100 miles on the bike this week which has felt great.  I really wish I could ride while I am in Jersey.  I also spent the week out at the plant where I have worked for the last 11 years before I started on the project.   It is always nice to go back to the plant and see everybody but it has been over a year since I have worked there and feel a little out of place when I am there.  I spend the majority of my time working in Princeton and am really out of touch with what is going on at the plant. 

It was a frustrating week on the medical front.  I had an appointment to see my surgeon to get a look at the PET scan I had done a few weeks ago and the small area that looked questionable.   Dr. D told me on my last visit that he would call him personally and get a copy of my scan to him so he could review it.  Well I get to my appointment and Dr. M has no idea why I am there.  I almost always carry my file with me which has all my test results in it.  I don’t have a copy of my last PET scan for some reason and it’s the only test I don’t have a copy of.  Dr. D wasn’t in the office yet and it wouldn’t have mattered since the PET scan is not something they can fax over.   He is going to get a copy and review it and call me he said.  I was frustrated with myself for not following up with my oncologist office to make sure they had sent the test over and for not having a copy of it with me.  I am a big believer in being a proactive and involved patient and blamed myself as much as anything.  Anyway, I spent a $40 co pay to flirt with the pretty nurse and visit with Dr. M.  Not the best way to spend my time.

I plan to spend today with my girls before having to fly back to New Jersey tonight for two straight weeks.  I am planning to spend next weekend in New York but really don’t have any plans yet.   I think I am going to rent a bike on Saturday and see the city that way for the day and then Sunday either go see the Yankees play the Rockies or one of the million museums I haven’t seen yet.   It’s always hard to pick what to do when I am in New York.

Catching Up

I recently finished reading Lance Armstrong’s book titled It’s Not About the Bike.  It was an amazing read by an amazing man telling an amazing story.  If you want a glimpse of what it is like to go through this battle I highly recommend reading this book.  I think people see what this disease does to us physically but that’s only a part of the battle.  I have always been a Lance Armstrong fan only knowing part of his story.  I knew he had cancer and won ton of races in France but really didn’t know the details of his story.  I don’t know how many times I read something and thought to myself that I felt the same way or had the same thought.   I passed it on to another warrior who I think already has plans to pass it on to another. We are not helping Lance’s book sales numbers but we are sharing his story.  Lance has been in the media again lately over allegations of performance enhancing drugs use.  Depending on the day I feel differently about this.  I have a ton of respect for what Lance has done with his fame and fortune.  He just as easily could have taken his money and new found fame and done many different things.  He started the Lance Armstrong Foundation and Livestong which has done amazing work supporting people affected by cancer.  After over 500 different drug test he has never tested positive for anything.  The latest reports are that he failed two different tests and somehow was able to cover it up or buy his way out.  I have a hard time believing this.  For an anti doping agency there is no bigger fish to catch than Lance Armstrong and I find it hard to believe any agency would let him off the hook.  Livestrong is now a worldwide movement and offers support to the 28 million people who have survived a bout with this disease.  Cancer made Lance put all his chips in the middle.  His career, his fortune, and his life were all in play.  After treatment one of his doctors confessed to him that his chances of survival were about 3%.   The chemo he endured was horrific and I find it hard to believe that he would go and put a bunch of chemicals in his body after that experience.  I also am not naive.   This guy is knocking off Tour De France titles one after another during an era when riders are failing drug test right and left.  It certainly looks questionable.  Lance gets the benefit of the doubt from me however. Reading his book reminded me how much better I have it than others.  His chemo was brutal compared to what I went through.   

Earlier this year my nephew Jeremy was asked to sing the national anthem at Kansas Speedway before the NASCAR truck series race.  This is the second year he has been asked to do this and this year he asked me if I wanted to join him on the day he sang and also the following day for the sprint cup race.  At the time I was still taking Interferon and I told him yes but was sure that I wouldn’t be able to go.  Since I am no longer taking interferon I was able to go both days.   I think most
people who read  my blog are also Facebook friends and I have posted a bunch of pictures from the weekend.  It was a blast but if ever if there was a crowd that needed some skin cancer prevention education it’s the NASCAR crowd.  Lots of bare red skin everywhere.  Ironically a year ago I would have been one of them.  Not this year, pants, a collared shirt, a hat, and lot and lots of Sunscreen.  We had passes that allowed us to go just about anywhere except drive on the track.  We saw a ton of drivers and owners up close and even had a brush with the king himself as well as Roger Penske. Jeremy got to meet Jeff Gordon who he is a huge fan of which was one of the highlights for me.  Being in the pits during the race, being in the garage before and after the race, and having full access to the media center was great.  We ate and drank for free and could retreat to the air-conditioned media center anytime we needed to cool off.    Jeremy knocked out the national anthem as I knew he would, all while rockin the Livestrong band in support of among others me which was by far the coolest part of the weekend for me. I posted a link to the video of him singing below.   He is a great kid and extremely talented.  Luckily he gets his musical talents from his mom and dad and not his uncle Paul.   I am blessed with wonderful nieces and nephews and their support during my trials this last year has not gone unnoticed or unappreciated.   I have said it before but I will say it again I have no idea how people get through this without the support of their friends and family.  I spent my first national cancer survivor’s day as a cancer survivor hanging out in the pits with Jeff Gordon and Dale Jr., I got to see Richard Petty and Roger Penske, and watched most of the race from pit road.  Take that cancer and I hope you could feel the collective energy of over 28 million cancer survivors all flipping you the bird on the same day.

 

  I physically feel great.  I put 20 miles on the bike yesterday and if the weather clears plan to go and ride some hills today.   I am home for the full week which I think is the first time since early April that I have had a full week at home.  I am really looking forward to being here but will miss my friends on the project, and not having to make my bed.  I was trying to explain to somebody earlier this week how I feel mentally and it’s hard to put into words.  I just feel a little off still.  My memory is getting better and some of the chemo brain symptoms are starting to slowly fade.   I want my old life back but either can’t or won’t go back to it.  I know its all part of the process but that’s where I am at now.  I’m not taking any kind of treatment any longer and the constant Dr appointments and test have come to an end for the most part.  One day you are just another stiff trying to make a living, the next you are a cancer patient and things come at your so fast.  Decisions have to be made and there are a constant flow of Dr appointments and test and procedures.  It’s just a crazy pace.  Well now it has all ended almost as fast as it started and I guess I am “Cured” or at least as close to cured as a melanoma patient can be.   Again it’s hard to put into words, I just feel a little off for some reason.  I am sure my kids and co workers would tell you that I have been a little irritable lately but ironically I feel great both physically and mentally.  I am enjoying feeling good and know how lucky I am.  I have regained my taste for food, beer and good wine so what’s there to complain about.  I will just keep moving forward and figuring it out as I go.  I have an appointment with my surgeon this week so maybe that will make me feel better, ha ha.   I want to ask a favor of everybody who follows my blog or reads my post on Facebook. One of the first blogs I followed is called Pale Skin Is In (http://www.paleskinisin.com) and it is written by a lady named Tina.  She has been struggling lately and just this week moved from the hospital back home with the help of hospice and will continue her battle there, a battle that began in April 2006.  Please include her and her family in your thoughts a prayers this week.    

Paul

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.