Not Quite Tomato, Tomahto – The Irony Of It All

I think one of the most frustrating things a myeloma patient experiences is the lack of understanding about the disease.  How many patients have asked to see the mole that’s gone bad?  Literally two days ago I had someone say to me, “I just got tired of people asking to see where my Melanoma was !!! They wanted to “see” my mole !!!”  This is the nature of our disease, the name is very similar thus leading to confusion.

In 2008 I went to the Doctor.  It was the start of rugby season and I was trying to get in shape.  I had bloodwork done and the Doc called me in for some questions.  He asked if I was taking supplements -?!? – I was speechless as the strongest thing I was taking was GNC Mega Man vitamins.  But he wouldn’t give up the issue, was I taking supplements, “What would your wife say?”  I had a protein spike and, after the Oncologist visit, I was confirmed with Multiple Myeloma.  My post from that time is noted here: “The Obvious“.  If you’ve not been to the doctor, go, don’t pause, go, go NOW.  I found this disease because I was diagnosed early.  So take my advice – go to the doctor.  I even had someone in Central Park this weekend that said they were going to take my advice and go to the doctor this week.  He heard my story and realized he hadn’t been in awhile, looked at his wife, daughter and two dogs then back to me, “now you have seven you’ve touched”.

Which brings me to the irony.  I went in to see the dermatologist two weeks ago.  Now I’ve had a lot going on the last few years and, as I’ve stated before, I consider myself very lucky, as so many people have it so much tougher.  When I checked in the girl at the desk asked if I had been here before and I said “of course, but it’s been awhile.”  It had been awhile, since 2008 to be exact.  Since 2008 – since before my diagnosis.  Are you seeing the irony here?  I haven’t been to THIS type of doctor since 2008.  I’m soooooo stupid!

I got a Pneumovax injection in January of 2009 and I had a massive reaction.  My arm swelled for weeks, it was painful but it finally settled down, but I’ve always had a mark there.  I don’t remember when but it turned into a big red dot (slightly smaller than a dime) on my left arm.  But I’m sure I mentioned it to the other doctors at least once. So I go to see the Dermatologist and he asks if there’s anything I’d want him to look at.  I explained that I had a reaction to the Pneumovax injection and that it left a mark  but I had shown it to my other docs who said not to worry.  He looked at it and paused.  He said that if he had seen it alone, without my explanation, he would have immediately said it’s a Basal Cell Carcinoma.  He took a biopsy to check.  I hadn’t been to this doctor since 2008.  I’m sooooo stupid.

This brings us to Tomato, Tomahto – Myeloma, Melanoma.  Now when someone doesn’t understand and gets confused I can say yes, that’s the disease I have and be right on either point!  Talk about making it easy on me.  I have the disease I have and I have the disease everyone confuses it with!

I’m poking fun at something that I guess really isn’t funny.  Luckily, like with my case of Myeloma, I’ve got it easy.  Basal Cell Carcinoma is the best version of this disease to have.  It doesn’t spread, it’s very focused on the area where it occurs.  Once they come in and dig it out it’s gone.  So I’m not worried – heck, this one runs in the family.  Even my mother isn’t worried – and that’s saying a LOT!  But that being said I also did a quick search and it turns out that vaccination sites are more susceptible to this type of issue.  My doc said it’s usually squamish cell (sp?) but whichever it may be, if you have a vaccination spot, keep it protected.

The irony, in addition to the alliteration, is my preaching that I did early on and didn’t take to heart:  GO TO THE DOCTOR – GO TO ALL THE DOCTORS.  GO NOW!

You know what’s next for me?  A colonoscopy – and I excited?  No – BUT I’M GOING TO THE DOCTOR!

Ode To Eric – for posterity

Ode To Eric
As I lay my head to sleep,
I pray to god, protect his feet!
200 miles he hopes to make;
With inspiration – a piece of cake.
Eric runs for two full days,
Towards a CURE in many ways.
It’s times like these I hope never end,
He’s someone I’m proud to call my friend!
The poem is done, the run is near,
Go kick some asphalt, then we’ll have a beer!

I wanted to put this down somewhere so I didn’t lose it!  This was for Eric’s run in Central Park Sept 19-21, 2014 #200MilesTowardsACure  

I Guess We Don’t Try Harder – Hertz’ Downhill Spiral

(spoiler alert – this has nothing to do with my status or with the cancer Multiple Myeloma – this is simply me venting about customer service gone bad!)

I think I may need to, “Try Harder” with a different car rental company.  I’ve been a Hertz Gold Member for many years.  Unlike other services, such as Dollar (now part of Hertz), Hertz’ service was impeccable, the cars were clean,  they were current make/model and were fully functional.  Over the past year and a half this has slid downhill, and I only wish I could say this was happening slowly.  The problem with the picture I’m portraying is that it’s only true in a very small section of the world, from a land-mass perspective.  This doesn’t happen in Wichita or Indianapolis or Dallas.  The issue I’m facing only occurs in New York City – yes, the Big Apple.  I guess rent had gotten too expensive and with the coming of ZipCar, Hertz was feeling the pressure and started closing their rental locations in the city.

Hertz launched “Hertz On Demand”, now known as Hertz 24/7 a few years ago.  This was Hertz’ competition for ZipCar.  I first signed up for Hertz On Demand but then didn’t use the service for well over a year.  My kids were young and my need for a quick jaunt to anywhere was limited.  When I needed a car it was for a long weekend or a drive to the Outer Banks. 

As my kids have gotten older, the need for a car to get up to Pelham for a rugby game or the Bronx for a basketball game has become more prevalent.   As I started using Hertz 24/7 (as it was now called), it was convenient and if I got the Fiat 500 it was cheaper than taking a taxi one-way.  This was great.  I even put up with the odd change of pickup locations that would occur approximately 30 minutes prior to pick up due to car availability.  I get it, the service is ‘fluid’ and you go where the car is available.

But then I got this car…

 The picture doesn’t need a thousand words.  This was just downright disgusting.

 But they left us a cigarette lighter.  I didn’t check to see if it worked.  I wasn’t going to touch anything in this car.

 This is where the kids had to sit…and look what they found.

I used the Hertz 24/7 Immediate Assistance button.  I explained the situation but I couldn’t get another car, we needed to get to a basketball game.  You know what Hertz gave me?  $25.00 off my rental.

I’ve had rentals where the driver’s seat would only stay reclined fully.  Where the parts of the fender have broken off.  Where the gas card was missing.  All of this I expect from Dollar, but not from Hertz.   And PlatePass is another topic.  When you rent, PlatePass in the car is key in this small land mass known as New York City.  The Lincoln, The Holland, The Midtown tunnels, the RFK (Triboro) Bridge – not only are you paying a ton to get in, you will wait in line forever if you don’t have EzPass. 

My last rental we drove to Baltimore – and it was this rental that brought on my rant.  Here in Manhattan they’ve been shutting down the Hertz locations in the city.  40th East Side closed a few weeks prior to the pictures above being taken.  12th Street and University is no longer listed on their on-line booking site.  To rent from a physical person you need to go to JFK, LGA or EWR.  You can go to a parking lot and talk to a virtual attendant but the parking attendant has to get you the car.  And to prep for your arrival, they print your contract and put it, with the keys, in your car.  Of course the parking lot attendant didn’t know that.  So here’s what happened for my rental to Baltimore…
1) lot attendant had no idea of my rental or any agreement
2) by the time i used the kiosk with the virtual attendant they found the car
3) they couldn’t find the keys to the car parked in front
4) 30 minutes later, after profuse apologies from the agent who happened to be there, I left with my car.
5) arriving at my first toll booth I realized that there is no PlatePass – Jersey Tolls, Delaware Tolls, Maryland Tolls – need I say more?

Returning the car the next day, albeit late, I waited for the lot attendant who told me all is fine and I don’t need to do anything else.  The next few days I still hadn’t received an invoice and Hertz was hitting my Amex for $100.00 each day.   Finally I got an email with my invoice, at the price I expected. 

What I received today however put me over the edge,
“The vehicle that you recently rented from a Hertz Company (Hertz, Dollar, Thrifty, or Firefly Car Rental) was scheduled to be returned to: (location, etc. with) Date Due: 7/13/2014.

This vehicle is now seriously overdue.
Please do not ignore this letter.

Pursuant to the Terms and Conditions of the Rental Agreement, we hereby demand that our vehicle be immediately returned…..Failure to return our vehicle as instructed may result in the vehicle being reported stolen….Your immediate attention is necessary to prevent the potential revocation of future rental privileges and/or legal action to recover our vehicle.”

This letter put me over the edge.  For that reason I’ve decided to use my blog as a forum and I apologize to those that are here to find out about my disease and how I’m doing.  However, it’s my blog and I can write what I want.  If you too have had an issue like this with Hertz, please re-post, re-tweet pass it around. 

Perhaps we can find out if “Hertz Will Try Harder!”

Upate and Lack of Updates!

When you’re sick and at the hospital you seem to have plenty of time to sit down and write, and write and write!  When you’re not sick, you may still worry but you’re not sitting down and writing about nothing!  And now that I’m not currently climbing tall buildings (slowly) I’ve been focusing on the rest of life: kids, wife and family (I guess work has to fit in there as well). 

I have to do an update regarding my Nike app and the Empire State Building run.

I have to do an update on a friend that went through a tandem and the drugs he was taking (as it’s completely different than what I did).

I have to do an update on what really caught me off guard after this year’s push up the ESB.

But I also have u12 rugby, baseball, summer camps, vacations and so many other things that I’ve just not kept up w/ my blog.

Thanks to those of you that are reading and following.  I just got back from the doc today and I am doing great, still no sign of the disease. I know others that aren’t doing that well so I’ll thank my lucky stars and ask that everyone else put out a good word for those that are really facing the challenge.

Thanks for reading!

bill

More Lagered, My Seventh Pack (DJSG ref!)

Two days from now, at this time, I will be sitting in a bar enjoying a well deserved pint, with my heart rate finally subsiding but the sweat still there.  The Empire State Building Run Up is Wednesday night.  Throughout this entire process I’ve been commenting mostly on Facebook but I’ve written a few blog posts that I’m proud of as the nature of what I go through is something I don’t think I can really explain.  Everybody calls me an inspiration and thanks me for what I do, and for that I am very appreciative; but there are so many others that are so much more courageous and do so much more that I’m not sure I can compare.  Many of you will tell me shut up – I understand – I will take credit and will accept your thanks.  But I will also remind you that I’m selfish!  What I do directly benefits me!  The money we raise will help me.  The example I set will help me be a better father.  The accolades you guys give me…well…think about it!

But enough with the pity party…I want to recognize some good and some bad as I get ready for Wednesday.  Parts of this may end up being the speech I will give (as you know I can’t shut up!)  First on the list – my nurse Kourtney, from Mount Sinai is actually running the race.  Now you might say, ok…but realize that a year ago, I was in hospital, with Kourtney.  This just means that much more to me.  And she found me!  I’m so excited – I will see so many new people but to have someone there that was literally there with me a year ago just puts the icing on the cake!

Second, the not so good.  I mentioned the other day in my #DailyStairs to ask for thoughts and prayers for Matthew.  He’s got a very aggressive version of the disease, very aggressive.  I was luck to speak with him and his wife to help talk about options and where to go but for all of you that commented on Facebook his wife and his cousin saw those and it really meant something.  Being able to put that together and help let them know that there are others that want to help if they need it just proves how much good there really is in this world.

Third, my #DailyStairs – in 2001 I had my first trip to Auckland, NZ and one night walked down the main street and found a record shop.  I picked up this DJ mix CD called Lagered, The Sixth Pack.  This two cd set was nothing but upbeat, high energy for over two hours.  I’ve had this on my mp3, iPod and four versions of iPhones since 2001.  This is an essential part of my run/workout and has helped get me motivated up a whole bunch of stairs.  Well, thanks to Twitter and Facebook I was able to get in touch w/ DJ Sample Gee, Auckland’s number one, playing regularly at Sale and also working w/ this really cool outdoor event called Mint!  DJSG created a mix, just for me, called Empire State Of Mind – 39 minutes of continuous 160 odd beats per minute with lots of energy transitions.  Not sure how much it will affect me after 40 flights but it will be definitely turned up once I reach 41 so apologies to those that I don’t hear saying, “on your left.”

Fourth, my original myeloma buddies, Micky and Lorna :)  The first blog-mates I got in touch with and one of the first with whom I was able to trade illustrative digestive stories.  Mike jumped off a bridge earlier this year to raise money for Myeloma UK.  For those of us with good insurance or in the US you don’t always realize how difficult it is to get treatment or meds.  Too many hoops.  As easy as my transplant was, Mike’s was a horror story but he’s doing well now and still making smarmy comments on my posts while also convincing Facebook that we went to school together in England (i’ve never lived in England!)

Fifth, Rick Corman.  I have a post already written about him here.  Rick passed in late August after fighting MM for many years.  There’s not much I can say about this gentleman – even with this disease, and somewhat withered from his former self, he was a commanding presence.  Commanding but gracious and humble.  I referred to him as a mentor – not sure if that’s the right word but he took me on when I got diagnosed, put me in touch (literally that night) with my doctor and helped make me realize that everything you read on the internet is bullshit!  Thank you Rick, my first beer is for you.

Sixth, a small part of my reason for doing this – Bob, Steve and Andy.  I’m a sap for this race as it happened while I was in the hospital.  Bob, Steve and Andy were all directly around the time when I was going through my transplant.  And as I’ve said many times, these boys have all been through what I’ve been through.  In Andy’s case, twice!  And they’re still fighting while I’m in a complete remission.  If I inspire you, take a look at these guys…they inspire me!  There are others: Shells, Amy, Matt, Elizabeth, Nancy, Cynthia, and many more.  Yes I’m the guy making a lot of noise but you guys all do so much as well.  Thank you for keeping me inspired.

Seventh, and a newcomer to this race, Samantha.  I’ve had the pleasure of working with a few of you that are running the race and raising money: Tim, David, Eric (not running but raised a ton of dough!)  I saw Samantha’s post re; running the race and shared her post, saying that I would love some of the cupcakes she had made, especially the orange one that said MMRF.  Luckily, my first MMRF buddy Brooke, saw my comment and corrected my mistake with the comment, “Bill, you must have run up those stairs and into a bar – those are rocks, not cupcakes!”  In all honesty, I had just come home from having two beers after work.  Brooke caught me and called me out!  #EpicFail!  And then Samantha was $130 from her goal of raising $3 per step (that’s 3 x 1576 – you do the math) I re-posted and my buddy Brooke came back and said I’ll pay $100 for the stone of the Empire State Building.  But she thought it was on my post.  I corrected it, told her to put it to Samantha because I was hitting my now extended goal and bottom line, it was all going to me – to help me fight this miserable disease.  But Sam didn’t end there.  When I asked Sam why she was running, who did she know with the disease, her response was, “nobody – I saw the good things being done and wanted to help”.  She’s doing this all the way from San Diego.  So here’s someone that is doing this because it’s the right thing – not a selfish reason such as myself AND, ANDDDD…(wait for it).

She went and painted a stone, with the Empire State Building, just for me, based upon the empire state building in the video I shot celebrating my one year anniversary (which was photobombed by my cat!)  This is just so sweet, and means so much to me!

Now, as happens in anything else you write, when thanking people, you’ll forget someone (Mom, you mean the world to me but you didn’t make the cut).  If I forgot you I’ll claim chemo brain so remind me and I’ll make it in the next post.  But I’ll ask you now, how “inspiring” am I?  How much of an example am I when compared to these people.  These people inspire me.  People ask me, as I’ve said before, why are you doing this…I’m doing it because I can.  I can and so many others can’t.  I can and so many others ARE, because its the right thing, because it’s a good cause and because we’re going to find a cure!

This disease will move to chronic in my lifetime!  That’s my story and I’m stickin’ to it!

Thanks for reading

(This story has not been proofed in any way, except for the 40 proof glass of grappa drunk while writing it!)

An Amazing Day!

Today was an amazing day!

I’ve been writing my blog since I first got diagnosed in 2008.  And a lot of you have actually spent time reading my blog and, for that, I’m grateful.  I write the blog to get things off my chest.  I write the blog so I don’t have to explain things to my mother.  I write the blog because it makes me feel like I’m doing something.  But I write the blog because sometimes you just need to put it out there.  And when you do it in a blog you don’t have to argue your point…it’s your point and that’s all there is to it.

Now, as for “what I do” – it’s simple – I live.  For those that have read YIDWID you understand that I Do What I Do because I can.  I have cancer, I have a disease and that disease is incurable.

And that sucks!

But that’s sort of like saying I have hair – yeah, I know, this really doesn’t make sense right now but wait for it…hopefully this will be clearer (and for full transparency, this is NOT a grappa fueled diatribe!)  Everyone has hair – some more than others, some fine, some thick, some curly, some straight.  Everyone has hair but not everyone’s hair is the same.

I have cancer, I have a disease, it’s called Multiple Myeloma – but not everyone’s Multiple Myeloma is the same.  Some have heavy chain, some have light chain, some get bloodworm, some get 24 hour urine tests, some take Revlimid, some take Polalidimide (sp?).

SOME GET REMISSION AND SOME (TOO MANY) DON’T.

I do this because I CAN!

A number of you think I’m doing something special, but I’m doing this because I don’t have to go to the hospital twice a week.  I don’t have to take drugs that wipe me out and leave me without energy.  There are so many things that I don’t have to do it’s really easy to do what I’m doing now.

Today I got so many messages, telling me how I’m inspiring people.  Listening to these messages a bunch of these people have their own diseases to fight…you inspire me!  Now with my #DailyStairs I’m also getting to know a lot of people that are fighting the fight or have lost the fight.  For me, I”m running a bunch of stairs and tweeting and fbooking!  That’s not fighting!  Today I got a flurry of donations, in addition to all these comments.  I’m not trying to be humble but I really appreciate all your comments – they really help to keep me going.  I also really appreciate all your donations – they are going to help me find a way to get this disease out of the “incurable” category in my lifetime!  At some point this disease is going to come back at me, and I’ll be back on the drugs, trying to motivate myself but I guarantee there will be someone else out there helping to “promote global hair loss” and fight this disease.  With all of you behind me I have no worries!

As I said, Today Was An Amazing Day!  Thank you!