The C-Word and another Stray Kitten

Another stray kitten. And it’s starting to really piss me off. I know it seems like everyone is fighting cancer these days. I’m sure it has to do with what we eat, how we eat, how we cook and all the other things we do to make our lives easier — but that’s not why I’m writing. I’m writing from Anger. I’m writing for Revenge. I’m writing because it’s just NOT FAIR. 

I’m all for sportsmanship — a good clean game (most likely Rugby) where you need to fight and work together to win — cancer doesn’t play fair. And having cancer I consider myself a fighter and I know lots of you will say I inspire but I don’t feel I can hold a candle to some of you. Those that are continuing to fight this disease. Those that need to watch your numbers monthly, if not weekly. Those that need to call Celgene to answer that damn recorded message on whether or not you’re having sex with a woman that has a womb because you’re taking a drug that caused all those birth defects back in the day. Those that have to go back to the hospital for a four day aggressive chemo treatment. Those that have been to a hospital who can’t get a damn nurse to do the bone marrow biopsy done right.

And Brad.

Brad passed away tonight.

God I hate this disease. I want my son to be able to read this at some point so I’m avoiding the F-word, but I’m so pissed right now that I don’t know what to do. You want to know a fighter? 

Know Brad. 

Remember Brad. 

BE BRAD. 

He and his family, direct and extended, found ways to raise money to fight Multiple Myeloma. And the fight will continue. However, it will continue without one of it’s true champions. So where does that leave us?

With a gaping hole where Brad used to be. 

What would Brad say? “Get out of the damn hole and fight!”

It’s alright to be upset. It’s ok to be angry. It’s fine to be sad. But don’t ever stop fighting. We will find a cure for this disease in MY lifetime. I just wish we could have found one in his.

RIP Brad — We will continue to be #BradStrong in your honor. 

Rugby — The Great Equalizer

In 1994 I moved to New York City and met a group of, soon to be, friends for life. In 2000 I moved to Hong Kong and met another group of, soon to be, friends for life, my very own Band of Brothers. In 1995, my friend convinced someone to drive my brother and I to a tournament in Long Island and I met, my soon to be, wife. Like the old Saturday Night Live! skit (ok, a little poetic license), “RRRugby’s been berry berry good to me!”

But today reminded me of why this sport does what all the other sports try to do. All of the professional sports have programs for kids and make great commercials showing kids getting exercise and having fun. But I’ve had the opportunity to witness, first hand, for the nth time, where the sport of Rugby has become the Great Equalizer. I see this in a mother’s eye. I see this in a boy who is standing a bit taller. I see this in myself, trying to be coach and line judge, while trying NOT to show the ‘Dad’ side of me. But when that conversion kick cleared the posts — boy was I proud!

You see, in Rugby, anyone can excel. It’s not a game of special teams. It’s not a game that can be dominated by a single player. To me, it was the first true Team sport I ever played. More importantly, it is a sport where someone that’s ‘average at best’ in other sports, can excel and, more importantly, become a valid and important part of the team. Today reminded me how big an influence, and how big a piece of someone’s life, Rugby can become.

Many years ago there was a boy playing flag Rugby on a team of superstars (superstars from basketball, baseball, etc.) Where the superstars ran all over the field, avoiding tackles like the plague, running 25 meters but only gaining two, this boy would get the ball and run straight ahead, and gain three meters. There was no flash, there was no pizazz, just straight ahead, three meters. And when the opposing team had the ball, straight forward, and flag (tackle!)

I know a young girl, petite, quiet and one you would never assume or view in an aggressive sense. Until you get her a set of flags and a Rugby ball — and then the tiger is released! This girl is a mad-woman on the pitch. She is confident, strong and a force to be reckoned with. This girl’s passion and interest has almost convinced her mother to let her join the Under 12 tackle team next year.

I know another girl who, again, is quiet, unassuming, and a great student. On the pitch she is a leader, a strong tackler and has no problem going toe to toe with the other U12 kids, boy or girl. Her brother plays so I’m sure her brother may have had some impact but she plays here own game and she does it well.

I have another “like a girl” moment, and that’s from a U12 that moved to a different team this year. For the two seasons I’ve had the luck of coaching her she was a player that set the example on the pitch. When we were ahead, and she was ready to score another try, she would wait for a teammate so she could pass and give them the opportunity to score. She sets the example of how the game should be played, quite literally, “like a girl”.

But the recent event that prompted this diatribe was from a young man that started playing Rugby just shy of two years ago. He’s in the Under 14 squad and isn’t one of the superstars, isn’t perfectly fit, wouldn’t be one of the kids you look at and then expect big things. And that’s what I love about Rugby. This Boy did BIG things — TWICE! On a breakaway from about 35 meters, he came running out of the pack, ball in hand, facing three opposing players. The first player that came in to tackle him was forcibly knocked back — this Boy was having none of that! The second two came at him separately, but then, like a cheetah after prey, this Boy kicked it into high gear. He got tackled at the try line but he made the try — and the look on his face, and his Mother’s face, was priceless! Both of them were walking away from this game a little taller and a lot prouder.

BUT THEN HE DID IT AGAIN — well, almost.

Another breakaway, and this Boy, a.k.a. Superman, had the try line in his sights. A similar play, with a similar cheetah, even faster this time. So proud of himself, coming in for his second try, in one game, he was going to place the ball, no diving, he was going to show that he made this try easy. And then that other guy caught up with him, just tapped the leg enough for his hand to hit his knee and knock the ball forward. Five meter scrum to them. But it didn’t matter, he may not have scored the try but everyone saw and everyone knew he could have. And that’s all that mattered.

And that’s why Rugby is the great equalizer. It is possible for everyone and anyone to play a part. And anyone willing to enter the pitch with me will be my brother. A few of our U12s had to play for the opposing team due to their lack of numbers (a story all too often told in Rugby) and their comments?

“I scored two for them and one for us!”

They just wanted to play, they wanted to participate and they were proud. I saw a Facebook post the other day, “Enemies for 80 minutes, Friends for life!” That pretty much says it all.

When I started playing Rugby in 1995 I realized this was the sport for me. When my future wife put up with my obnoxious teammates, I knew she was the wife for me. When I was on the wrong side of the world (or perhaps it was the right side) during the bombing in Bali, Indonesia, I saw how Rugby went beyond the Great Equalizer. I lost 11 friends, 9 teammates in that bombing. Our season had gotten off to a lousy start in 2002, but after Bali, we Band of Brothers pulled together and won the Grand Championship in our division. The Rugby community, as a whole, came together to support the people affected by this travesty. Our win was personal and we did it for the Boys up in the Sky Bar. But what I learned was how this community could take adversity and turn it into something greater.

Rugby has meant so much to me. But to see it through the eyes of my son, and all the kids on his team, makes me realize it trancends even further. They are learning community, respect, leadership and sportsmanship. They are building a camaraderie with their immediate teammates as well as the older ones. And you don’t see the parental impact that you see in little league (insert sport here). I would say it’s due to the fact that we’re in the States and us Seppos don’t understand the sport so the parents can’t get involved; however, I saw the same thing in Hong Kong mini-Rugby, and that’s a virtual melting pot of Rugby. This isn’t a regional thing, it’s the sport.

I see Rugby building kids moreso than any other sport I’ve watched my kids play, with or without me coaching. I’ve seen kids that aren’t sure of themselves when they start take command on the field. And this past weekend I saw a Boy take a step forward in his life that he’ll always remember. These things aren’t a flash in the plan. These are things that happen in every game. Whether Rugby can ever compete with the sports offered to kids here in the Land of ‘Yanks I can’t answer, but I am proud to be involved in seeing these few kids grow up in a game that I love so much. And I’m more proud to see them standing more tall and more confident than when they came in!

The old adage, Rugby is a hooligans game played by Gentlemen where football (sic soccer) is a Gentleman’s game played by hooligans, rings true. Rugby may seem like a giant game of Kill The Man With The Ball but there’s a method to the madness and a code that is followed. Rugby is, after all, the Great Equalizer. Thanks for reading, support your local hooker — go watch a Rugby match.

#SometimesIFeelWeek aka #CancerOnAnAirliner

When you have cancer there are a number of things you have to deal with, both physically and mentally. You know the deal: the drugs, the nausea, the hair loss. But getting kicked off an airplane shouldn’t be something you have to encounter.

Mulitple Myleoma is a blood cancer where one of the proteins that usually help fight infections goes rogue. The protein starts taking over your bone marrow, eventually eating away at the bone itself. As this cancer affects the tools your body uses to fight infections it impacts your ability to fight the germs and viruses everyone else easily deals with daily. Your immune system is suppressed and the slightest exposure can be dangerous, if not deadly. For this reason, all of us that have this disease, have masks that we wear to avoid exposure to these everyday germs.

In Japan it’s commonplace for someone to wear a mask when they’re sick, as a courtesy to others. If we were in Japan then we wouldn’t be looked at strangely. But we’re not in Japan, and if you wear a mask, people will stare, and wonder if you have Ebola. You’re trying to prevent yourself from getting sick, and you’re treated like you’re going to make everyone else sick.

You didn’t mean to stare like that. You didn’t mean to grab the tissue from your pocket or purse after you saw me wearing a mask. You didn’t mean to move to another seat after you saw me wearing a mask. You don’t mean to do these things but it happens. And we don’t care as we probably did the same thing — before we wore the mask.

So…the mask — it sucks. If you wear glasses it fogs them. It makes your nose sweaty. It messes up your hair and it is uncomfortable to wear that elastic band.

But it does keep you from dying.

Without the mask, the common cold can make those with a compromised immune system really sick. But the key point here is that without the mask we might get sick. We aren’t already sick, we have cancer, which means our immune system is compromised and we might get sick, we aren’t sick now, we might get sick. But we’re not sick now, and that’s the important point.

Which brings me to the purpose of my post — April 6th, 2015, a friend of mine was flying Alaska Airlines home from Hawaii to San Jose. Due to the nature of the situation — a small, enclosed place, lots of germs, compromised immune system — my friend was wearing her mask. She was dealing with the questions, “Do I wear the mask and make sure I don’t get sick?”, or, “Do I not wear the mask and avoid the stares and the uncomfortable situation for both me and my family?”

How many of you have made a comment about the germs that exist on an airplane? How many of you have considered how difficult it would be to get on that plane, if those germs could kill you. Would you wear the mask? I mean, you’d have a sweaty nose, bad hair, fogged glasses — but you wouldn’t die. What would you do?

My friend didn’t have a choice. She was asked, “do you need anything?” and she responded, “well I might need a bit of extra time to board, sometimes I feel weak.”

Sometimes I Feel Weak

That phrase resulted in Alaska Airlines calling a doctor and having her, and her family, physically removed from the plane. She wasn’t sick, she was trying to NOT get sick. But someone saw the mask and determined that a doctor’s note was required, to ensure the safety and well being of the passenger. Alaska Airlines’ response was to post an explanation of their policies, which I’ve quoted, in part, here but provided a link to the entire post at the bottom:

Are customers who wear a face mask permitted to fly without a doctor’s note? Yes. In the rare event a customer indicates that he or she is not feeling well, or may have difficulty flying, it is our policy to follow the advice of our on-call MedLink medical professionals.

What advice do you have for people traveling with cancer or other diseases? Anyone who is receiving medical treatment that might impact their ability to fly should check with their physician to determine if it is safe to fly.

for all policies: http://blog.alaskaair.com/2015/04/08/note-to-customers/

So my friend wasn’t sick. She didn’t indicate she wasn’t feeling well or may have difficulty flying. She was going to have chemotherapy the next day but she hadn’t been undergoing any medical treatment that may have impacted her ability to fly. She had just spent the week in Hawaii, with her family. I know — I saw the pictures on Facebook. She wasn’t sick — she was relaxing, in a beautiful place, with her beautiful family -

and she was then escorted off the Alaskan Airlines flight.

“I’m being removed as if I’m a criminal or contagious,” is a quote from the video posted on Facebook that evening here. From that one post there are over 700 shares and a massive number of comments. But it doesn’t replace the fact that she was kicked off an Alaskan Airlines flight for wearing a mask and admitting that sometimes she feels weak.

Alaskan Airlines has refunded the cost of her flight and the cost of the hotel for an extra night in Hawaii. And my friend, has setup a page via the Multiple Myeloma Research Foundation (The MMRF) and my friend has donated the refunded amount to The MMRF. But how do you pay for the humiliation? How do you explain to your kids the right way to deal with people? How do you personally deal with this and what may happen next time? How do you answer the question we asked earlier? Do you wear the mask?

I applaud Liz for her courage. I applaud Liz’ family for their courage dealing with this situation. I applaud Liz for ‘taking one for the team’ and helping to raise awareness for our disease and the issues a cancer patient faces. I applaud Liz’ friends for getting the word out there and making sure Alaskan Airlines realized their mistake. I applaud Liz for being strong, setting the right example and taking this in stride.

Which gives me the ability and freedom to rant, on her behalf. She’s taken this well and tried to make this a fundraising ability, putting a nice spin on a really bad situation. I, however, am unattached to the situation and can take offense at the actions that occurred. I disagree with what Alaskan Airlines have done thus far and don’t believe they’ve ‘answered’ for the actions they took. But Liz is ok so I’ll leave my efforts to the writing of this post.

Everyone has a story and has something that just isn’t right; but this is so far from right I had to write a post. As a cancer patient, thanks for reading. As a friend of Liz’, thanks for reading. If this note struck a nerve, Liz has setup a donation site via the MMRF here:

http://www.themmrf.org/sedways/

For more info and links regarding her story, use these links:

Liz’ original post on Facebook

https://www.facebook.com/video.php?v=10153484210382289&set=vb.596002288&type=2&theater

Time.com article

http://time.com/3813516/elizabeth-sedway-alaska-airlines-cancer-kick-off-flight/

NBC Nightly News

http://www.nbcnews.com/nightly-news/video/airline-apologizes-after-cancer-patient-kicked-off-flight-425162819980

The C-Word and "stray kittens"

I have a form of cancer called Multiple Myeloma.  Now see, I could have introduced myself, told you about my cats or kids, explained my love of the rather infamous game of rugby but I still would have hit you with those nine words at some point.  Best to get it out in the open straight away.  I haven't posted an update to my blog since September.  There are two problems with having a blog about cancer and not posting an update: people that rely on your commentary don't know when they'll get the "next round", and; since I have cancer, the potential exists that someone thinks I'm dead.  That is definitely not the case!  I created my blog so that I could document my experience, write down what I was going through, where I stood, and the next steps I was taking.  All very useful when speaking to my mother, so that I only had to explain it to her once,  over the phone, since she will have read it three or four times by then already.  I never really promised anything more than that...

You find, when people read what you write, you sometimes strike a nerve.  You've offered an inspiration without ever planning to do so.  In my opinion, the best restaurants, coffee shops or even books, are those where the principle knows who they are, what they want and just do it, regardless of what you think.  When it comes from the heart, it strikes true and to the point.  Luckily I've had a few posts that have gotten that sort of reaction.  If I was writing a novel then I'd be pleased and hope that it would become viral.  But I'm writing about cancer and that sucks.  If I can write something that helps someone else with cancer address their fear, that's great - but it still sucks, I mean it's still cancer.  If I can do something to help inspire someone to do something or raise money, that's great - but it still sucks because it's cancer.  Cancer sucks, the treatment is miserable, the disease is miserable and the feelings you have to deal with are miserable.  When you put yourself out there, in the public eye, you sign on for something that, in its own way, is miserable.

I was diagnosed in 2008, harvested my stem cells in 2010, had a stem cell transplant in 2013 and am now two years in full remission - no sign of the culprit.  I've had four rounds of chemo that didn't make me vomit or lose tons of weight.  I met my evil foe Steroid: gained weight, almost kicked the cat and did yell at a client.  I had 36 cycles of Revlimid and all the itchy redness and monthly phone call to prove (via a phone prompt service) that I'm having sex with a woman that has a womb but I am using a latex condom while not sharing or chewing my Revlimid.  I can make fun of these things as I, in my eyes, have had it extremely easy, a pleasure cruise of sorts, compared to the Gilligan's Island charter some friends of mine have been through.  At my one year anniversary I ran (walked) up the Empire State Building to raise money for the Multiple Myeloma Research Foundation (The MMRF).  I did my "daily stairs", dedicating my daily training for the Run Up to a different patient with Multiple Myeloma.  My first fund raiser, which occurred a year earlier and just one week prior to my entering hospital for my transplant, took its queue from the fact I would soon be losing my hair.  I was "Promoting Global Hair Loss" and had friends all over the world host an event, shearing their heads to raise money for The MMRF. As I explained to a friend today, that event was about me, my friends, people that knew me directly or within one degree of separation, up until the last two weeks, when I first started hearing from actual patients and caregivers.

But the ESBRU event, one year after my transplant, started out with patients, people with the disease, going through what I went through and, in many cases, much worse.  At first, it was patients that had some familial link back to me but within weeks there were people that were reaching out to me that I never knew but they shared their story.  When you start collecting those stories they come with a price.  It's like that litter of stray kittens, if you name them you're really screwed.  The minute you start connecting you've already gone too far - there's no going back.

Out of the pack of 300 odd people running the ESBRU race, I was in the elevator, after the race, with a lady and asked her why she was running.  Turns out her sister had asked her to look for me as we, her sister and I, had already been talking about why she was running!  I believe her family member was one of my daily stairs dedications.  I did my daily stairs for 20+ people, dedicating with a little sign I drew and posted on Facebook and Twitter, but I ran the race for three gentlemen that were going through their stem cell transplant shortly after I had finished mine.  These were the boys I was running ESBRU for - as Amy Freeze was kind enough to capture in her interview, I was doing this for them because I could - and they couldn't.

Bob was in the UK, and introduced me to WhatsApp before Facebook made it famous.  We traded pictures of each other wearing England rugby jerseys during one of the Six Nations games while Bob was in hospital.  Andy was in New Jersey but was going to the same doctor and hospital as me, in NYC, but his commute was miserable as it was two hours away from home.  And then there was Steve, from Long Island, who I met through his wife.  I live in the Big Apple, and my doc is uptown where I'm downtown.  One day I was complaining about a prescription I needed and was told I had to go uptown to get the scrip as they couldn't call it in to the pharmacy.  I complained in my blog and Steve's wife offered to drive in from Long Island and pick it up!  I finally got to meet Steve during his transplant and Steve said to me, "I'm sitting here bored because I read your blog and did everything you told me to do and now I'm not having any complications - so I blame you!"  That was one of my moments when I knew I struck a nerve.

These were the three that I ran (walked) my race for the evening of ESBRU.  As I mentioned before, I did it because I could, and they couldn't.  One year post transplant, Bob and Steve were back on meds and Andy was in for another transplant.  Here I was getting all the glory and running (walking) up the Empire State Building.  At my speech that night I mentioned them, a bit choked, as it really did seem strange that I was doing all this whey they were going through "all that!"

If everybody got diagnosed, and everybody went through four rounds of chemo, and everybody had 36 cycles of Revlimid and everybody had a stem cell transplant and then everybody ran (walked) the Empire State Building then it really would be just a matter or paying your dues.  But that's not how it works, because cancer sucks.  Two years post transplant I am as close to back to normal as you can be.  I've not posted anything on my blog since September because I've not really had anything to say. I'm not really on any meds of significance but I promise I'll have a really miserable time during the MRI I get in May; otherwise I'm back to normal life stuff.

Andy however has been through a second Auto (his own) SCT and then an Allo (someone else who's a match) SCT.

Bob is doing OK and we're keeping fingers crossed he'll stay that way but I will say I'll be wearing the shamrock, not the rose this weekend but I will reach out to Bob to help him drown his sorrows when England loses to Ireland.

Steve - well, that's a different matter.

Steve passed away this week.

Cancer sucks.  I don't have anything in my cancer agenda currently, no ESBRU or head shaving planned but I know I will do something.  Why?  Because I can and because I owe it to Steve, and Andy and Bob and Brad and Cynthia and Nancy and Jimmy and Matt and Shells and Deb and everyone else out there fighting this stupid disease.

The MMRF has revolutionized cancer research.  To their credit, they've reduced the number of years it will take to find a cure by an exponential value as they've embraced transparency and collaboration and reduced the time to market by incredible amounts.  That said, there's still no end in sight and I have a disease that is incurable.  I thank my lucky stars that the version of the disease I have has allowed me to lead a normal life, raise my kids and to help influence and inspire so many people.  But please realize when I say it - Steve is the hero here, as is Andy, Bob, Brad, Jimmy and a slew of others that are really battling this disease now.  At some point I may be in that position and I hope there will be a patient standard bearer then on my behalf.  Until then, I'm happy to be the one that gets up in your face and says, "I have a form of cancer called Multiple Myeloma".

If I can do something to help cure this miserable disease then I'm all for it!  We need a cure for this, and the many other kinds of cancer out there. What can you do?  First - be selfish - eat right, do some sort of exercise, go to the doctor. Put yourself in a position of minimal risk.  Your body, after all, is a temple! 

Second - a cancer patient is not a leper (apologies, saw Ben Hur on TCM last week), you don't need to be sorry and you need to understand EVERYONE wants to help. Put yourself in their shoes, how would you answer the question, "what can I do to help?"  You really can't imagine what it's like and we know that. We don't expect you to.  Everyone deals with this issue in their own way: the patient, the caregiver or the friend. Use common sense and realize if they seem snippy you can't necessarily understand what is going on in their head so be a little patient, they may be on Dex!

Third, know where the money goes. If you're fund raising, make sure you know the charity. Understand where they spend their money and if it is doing what you want to be done with your donation. Don't just give to feel like you have ticked the box. Check with a patient, check with Better Business, look up the charity and see how much goes towards physical care, research, etc. If you have any difficulties getting this information then turn and run away. Don't buy t-shirts on Facebook as its most likely a scam to pull at your heart strings.  And if you're in it just for the opportunity, to get a bib - if you're running he marathon through the MMRF then know it, support it and be an embrace it. You got this opportunity, and us patients are relying upon you. At ESBRU we had someone that was refusing to wear an MMRF shirt - I know you raised the minimum required, you "paid" for your entry, your opportunity to run. Realize you are also running for me - and I expect better. I have a friend that wanted to run a triathlon in Abu Dhabi. He got in through a charity and when he visited he wouldn't stop telling me about the charity and all the work they do.  He got behind the effort and represented - and then became a spokesperson for the group.

Fourth, give yourself a pat on the back for reading my rant!  I appreciate the time and the effort to follow my misguided train of thought.  I throw my comments out there when it comes to mind.  I've had a few "stray cat" moments, Steve is the most recent one and it reminds me I've made a commitment.  I'm not promising more frequent posts but hopefully what I've written has been of interest and helps you understand!  Now I have to figure out the title of this post.

Correction, Corrahction

As you all know, I am NOT a doctor but sometimes I'm able to fake it with the best of them and outline issues, medications and potential symptoms or impact.  However, in my last post, as I found out from my ill-guided NP at Mt Sinai this week, I was incorrect in my description.  I do have Basal Cell Carcinoma (or had it and have since had it removed) but I do NOT have Melanoma so cannot refer to myself with the alliteration diseases: melanoma and myeloma!

Basal cell is one type of skin cancer and is the easiest to deal with and treat.  Once you cut it out, if you get all of it, it's gone.  It doesn't spread and you don't have to worry about it.  The squamous cell carcinoma is apparently a step above but still easily dealt with whereas Melanoma is the worst kind of skin cancer to deal with.

I'm leaving my descriptions there but needed to clarify that my prior post was just a load of gibberish as usual where this post is much more factual and well spoke!

:)

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  

Are We There Yet? 200 Miles Of Hope!

So a few years ago I was "Promoting Global Hair Loss" and this guy started commenting on my posts and donating money for a picture of my cat with a light-up mohawk!   A friend of ours, Mary, said he was a friend from Ohio so I never thought any further.  We kept in touch and he commented on my Nike+ posts when I was trying to get back in shape after my Stem Cell Transplant.  I was running a very small amount at first but then started getting up to three miles at about a 9:20 pace - I was feeling good.

Then he told me he's going for a run.

I went for a run last week - 2.5 miles in my brand new shoes.  My friends kid ran a 5k and got 2nd in his age group.  But none of us went for a run like Eric went for a run.  Eric went Forest Gump style. 

He started on Friday morning and didn't end till Sunday morning. 

"Ah wehnt foh a run"*














I ran with him around 10:30 on Friday night.  When I caught up with him he had been running for 15 hours.  15 hours!  And he was just getting started.  After one loop I met my brother and went to get a beer just utterly amazed that I was going to go home, sleep, wake up, have a full day, go to sleep wake up and meet Eric when he was finishing his run.  Eric ran over 160 miles that weekend and raised a ton of dough.  And he raised all this money to help find a cure for Multiple Myeloma. 

I have Multiple Myeloma and I now know a whole lot of people who also have this disease.  It sucks having this disease but, as I've mentioned in the past, I've got it easy compared to some folks.  Cancer sucks and I believe there are two ways of dealing with it: Ostrich or Eric.  Now Eric doesn't have cancer, but a very dear friend of his died from MM and Eric has gone out of his way, and through many pairs of running shoes, to help raise money to find a cure.  If you talk to Eric he will tell you that we're his motivation.  And though we've said it, he'll never take credit for him being our motivation to keep going.

Think about the last time you had your Jerry Lewis moment - you have to be over 40 or maybe even 45 to get that one.  When was the last time you pulled a telethon type moment, where you did something for 24 hours?  The Jerry Lewis Telethon, when I was growing up, was something you did. Watching the TV all night and all day to see the guests and the stupid stuff that Jerry Lewis did.  That was a great memory and it was hard work, watching TV for almost 24 hours.

Eric is going to be running for over 48 hours - can you imagine?  There are no breaks.  What's worse, at 1am Central Park closes and Eric has to run AROUND, literally AROUND, Central Park till 5am.  That's why I'm running Friday night and running Saturday night and why I let Betsy convince me to buy a REAL pair of running shoes.  I run 3 miles at most.  I'll run 12 that weekend.  Eric has inspired me and given me a reason to post another blog spot to hopefully motivate others to be inspired.   You do what you can but Eric's gone well beyond that.  In fact, to get an idea of how inspired...look at this year's "poster" and my picture of Eric pointing.
 
Eric's pointing at my name...That's a real picture of Eric, or should I say shadow of Eric and the color around him are names, lots of names.  These are all people Eric has run for, communicated with or simply pointed at!  These are all people that inspire him but more importantly have hope because of him!  These are all people with Multiple Myeloma.  And I'm damn proud that my name is up there, right around the left hip!

I've said this in the past - we will find a cure for Multiple Myeloma within my lifetime - of that I am sure. 

The MMRF has done an unbelievable job moving drugs forward and the research is starting to pay off.  But none of that takes place without sponsorship and without donations.  I've done my fair share of fund raising over the last few years but Eric takes this to another level.  Because of what Eric does (and many other events/fundraisers like the Rubino Girls, the Crawfish Guys, the IceCream ScooperBowl) we will find a cure in my lifetime.  My kids won't have to worry about this, I won't have to worry about this, but most important of all, my MOTHER won't have to worry about this!

This is what I call hope - and Eric creates that hope with every step he takes.  And this brings up a great point and a little game.  Remember trying to guess the number of M&M's in the big jar?  Whomever can guess the number of steps Eric will need to take to reach 200 miles, I'll make a $100 donation in your name to Eric's run!  Eric or Tani will be my judge but whomever gets the closest will get due recognition here, on my FB PGHL page and via my Twitter account as well as a $100 donation to Eric's run.  So start counting steps - i can hear it now - "are we there yet?"

For donations: http://bit.ly/200m2acure

Eric's kickoff video link: here

* for full and total transparency, I have no rights whatsoever to the picture from Forest Gump and am not trying to abuse that image for financial gain.  I have cancer, I'm writing a post about this guy that runs alot - that made me think of Tom Hanks!  I think Tom would agree, this is a good reason for using the image so hopefully I won't get in trouble!