I’m Turning 3 — Happy Re-Birthday!

(originally published on Medium.com)

January 29th is my Re-Birthday.
On January 28th, 2013, I checked into Mt Sinai, the docs gave me a massive dose of Melphalan, I chewed through 2 and a half pitchers of ice chips and I killed all my stem cells. On January 29th, hopped up on Ativan and a cocktail of many other drugs, I received a set of “clean”, frozen stem cells I had harvested back in 2010. Since all my stem cells were brand new, they called it my Re-Birthday. I have a form of cancer called Multiple Myeloma for which there is currently no cure.

Multiple myeloma (myelo- + -oma, “marrow” + “tumor”), is a cancer of plasma cells, a type of white blood cell normally responsible for producing antibodies.[1] In multiple myeloma, collections of abnormal plasma cells accumulate in the bone marrow, where they interfere with the production of normal blood cells. (Wikipedia)

The primary process in fighting this disease involves a few steps. First there is chemotherapy, to reduce the presence of the disease in your body. Then they give you a high dose chemo that works like Raid™ — all the T-cells in your body that have been exposed to the chemo will die (“where stem cellscheck in but don’t check out”). Your body continues to create new T-cells, and these havent been exposed to the chemo, they are brand new, but if you don’t get them built up fast you’re essentially John Travolta in The Boy In The Plastic Bubble. To amp up stem cell production, you’re given Neupogen. In about a week you’re ready for harvest, and you hope it’s a good one! You’re in a bed for about 3 days with your blood taken out, spun through the rinse cycle, stem cells removed and blood returned. Your goal: collect 15 million T-cells to put in the freezer.
The apheresis machine that separates the stem cells — next stop on the Orange line?
Once you’ve harvested your cells you go through the actual transplant. This is called an Autologous Stem Cell Transplant, when the stem cells come from your own body. Similar to the stem cell harvest, you kill all the cells that exist and start from scratch. In my case I went 36 cycles of chemo (about three years) between harvest and transplant. Others go straight to a transplant. The transplant is like giving your system a reboot — start it over and see if it works normally or does it still create that lousy plasma protein that represents this form of cancer. So Re-Birthday sort of makes sense.
An average stem cell transplant takes 5 million T-cells so your harvest means you can potentially have three transplants. That’s the rub though, you usually only have two of your own transplants — if it doesn’t work after two then you look for something else. Something else usually means an Allogeneic Stem Cell Transplant, where the stem cells come from a healthy donor. This brings other risks to the table like graft vs host disease. But I digress…. The Stem Cell Transplant, that reboot to your body, is the best chance to get your body back on track so it stops producing the cells that create the cancer. As I mentioned, there is no cure for this disease so this transplant could work but isn’t a cure so you have a benchmark to at least give yourself an idea of where you stand.
I’m wary as I type this.
If you bring an umbrella it won’t rain.
If you don’t say, “The Jets have got this one”, they won’t lose in the last minute.
The first benchmark, after a stem cell transplant, is three years. I mentioned that there is no cure for this disease and the expectation is within the three year time frame the disease will return. That is the norm. Needless to say, the ‘norm’ sort of sucks.
My last check up was a few months ago and, as of that time there was no sign of the disease. In May of 2013 I had a bone marrow biopsy, PetCT, MRI, all to confirm the stem cell transplant had successfully pushed back the disease. Now that I’ve had a full reboot and we’re at the three year mark, we need to go beyond bloodwork analysis, check under the hood, and really look to see if this disease is truly gone. That doesn’t happen till April. And after the tests take place it is about nine VERY LONG days waiting for the results. At that time I’ll know if I’ve beaten the three year benchmark.
I’ll bring my umbrella and I won’t mention the status of the Jets game.
What I will mention, to even be in this situation, is something for which I am truly grateful. There were three guys going through a transplant at the same time I was. Two of them have passed away. Those are really shitty odds. I don’t have that risk factor they had but it’s important to realize that others do.
People make me out to be a hero or inspiration because I’ll take the time to write down these words and bare my soul — but that’s simple compared to what others are going through. Not really much else you can say here so I’ll talk about the strength that these others represent. Since I got diagnosed I’ve met, directly and indirectly, many other patients and I have yet to meet one that’s “given up”. Those are the odds I’m looking for!
I’ve lost three friends in the last two years? All of them fought till the very end with the most impressive attitude, strength and spirit. I have another friend (patient) that just climbed a mountain (a real one!) I have another friend (patient) who is a grandmother and climbed the Empire State Building with me. In fact there were six of us patients on that climb (which was exactly one year after my stem cell transplant). I know a patient that has run something like fifty marathons. I know a few ladies (patients) that have done Tough Mudders or Spartans or whatever those races where you do bizarre stuff are called! I know a very special patient who has dedicated herself to educating others on this disease and has become a renowned patient advocate. I know a lady (patient) down South that came to NYC just to meet a guy that does a lot for this disease (he’s not a patient so he doesn’t count! :) I know a patient that jumped off a bridge in the UK — he’s fine, he had a big rubber band attached. Now, unfortunately, it’s a dialysis machine.
I write blog posts.
And I brought an umbrella and won’t mention the Jets.
On my three year re-birthday I am thankful for everything I have but there are too many that don’t have everything I have. For those, realize there are others out there who feel or felt the same way you do. I didn’t want to reach out to anyone when I got diagnosed. I just started typing and inadvertantly ran into some really great people (patients). There are resources and there people that will help you realize that you too, can be strong. At first you may not think that’s the case but I know one lady (patient) that seemed to feel that way when she joined a Myeloma Facebook group. She is now a moderator of that group and helped lead the world in Mambo For Myeloma!
Having cancer sucks. Worse, it’s deadly. But I know the friends of mine that passed these last few years would be really pissed at you if you just gave up. There may be times when things aren’t so rosy. Take the time to write it down. You can publish it here, put it on Facebook, or simply tear it up, put it in an ash try and sacrifice it to the gods. I think you’ll find it gets part of it out of your system and reinforces your internal need to fight.
So on my third re-birthday, joine me in saying F-cancer!
In May I’ll talk about my umbrella and the Jets — till then, simply F-cancer!

Ode To A Sicilian — or V.F. Parkinson’s

When I was growing up, in the movies the tough guys were always Italians, and the really tough ones were always Sicilians. If you messed with them you ended up “sleepin’ wit da fishes.” You never made fun of these guys. You didn’t embarrass them because losing face was the worst thing that could happen to them. If they lost face, they had to win it back, they had to right the wrong…which usually meant, if you were the one that caused that loss, you were “sleepin’ wit da fishes.” When there’s a person that caused that loss of face, then there is a specific target for that vengence. When there’s not — what does that Italian (Sicilian, no less) do?
When my father moved into the development where he lives down South, there was one gentleman that lived there that impressed him. My father saw Mr F at the gym every day, working out and lifting weights. I happened to meet Mr F on the golf course, but saw him the very next day, at the gym, working out and lifting weights. This was a strong guy, a forceful guy, an Italian guy (Sicilian, no less). What impressed my father, and later me, was that when we met Mr F he was over 80 years old — working out and lifting weights. He was a regular Kirk Douglas, but tougher because Kirk isn’t aPaisan — he could kick Kirk’s ass!
Mr F was outspoken, opinionated and didn’t give a rats ass what you thought (or that’s the game he would play.) He is a great guy but always puts up the tough guy front. To be clear, Mr F hasn’t died, this isn’t a eulogy, but things have most definitely changed.
I have a form of cancer called Multiple Myeloma, a bone cancer that is incurable. My chemo wasn’t as bad as other types I’ve heard of but I went through a stem cell transplant in 2013 and that was definitely not a day at the beach. I’ve lost my hair twice. The first time I wasn’t prepared for it and that is what made the loss difficult. Vanity — and not being able to hide the fact that you have cancer — how do you deal with that? First, you’re bald, a cue ball; second, you have no way of hiding the fact that you have cancer. This means you have to not only answer questions but deal with the pity party that follows the questions. Now back to Mr F.
Mr F has Parkinsons.
At 80 years old, he’s working out every day, lifting weights (and kicking Kirk Douglas’ ass!)
Now he’s 90, has to use a walker, and sometimes has problems getting the words to come out of his mouth.
It’s frustrating. It’s infuriating. It’s…embarrassing. Did I mention that Mr F is Italian? (Sicilian, no less.)
Growing up in Jersey City, if someone made fun of him, he’d kick their ass. “Fuhgedaboudit — you’re nuthin!”
Now back to the Sicilians, if someone caused them to lose face, that person would soon be “sleepin’ wit da fishes.” But there isn’t a person, there’s only athing, a disease. It’s hard enough to fight the disease — but how do you deal with the rest? How do you kick Kirk Douglas’ ass when you can’t even get his name to come out of your mouth? It’s frustrating. it’s infuriating. It’s….embarassingEMBARRASSING for a Sicilian trying to save face.
But it shouldn’t be. He didn’t do anything, the disease is wreaking havoc and he’s worried that he won’t be viewed as that strong Italian (Sicilian, no less)! He’s worried he won’t be viewed as the guy that kicked Kirk Douglas’ ass! In my eyes he still is that strong Italian (Sicilian, no less) — he’s 90, fighting Parkinson’s and still working out every day, just not lifting weights. He does laps around his kitchen with a walker. He’s flicking the top of his fingernails from under the bottom of his chin shouting, “Vaffanculo” to Parkinson’s. In my eyes that’s the toughest thing in the book!
I raise money to fight Multiple Myeloma, I’m not writing this post to raise money for Parkinson’s and I’m definitely not writing this post as a eulogy. I’m writing this post so that others can understand the strength and perserverance this guy exemplifies. I’m not Italian, he knows I’m Irish and he would have kicked my ass back in Jersey City, but I only hope that I can be as strong as him when I’m that age.
If you know someone battling a disease, especially one that is debilitating, that removes your ability to act in the way you always have, think about it from their perspective, take a walk in their shoes. Think about how frustrating it is to just say fr, fr, fr, fr fruuuuuu…..FRUSTRATING! Your mind knows what to do, your mouth knows what to do, but your body betrays you. You feel foolish, you lose face, and you can’t really do anything ab0ut it. That’s when I say, so what, “Fuhgedaboudit”, to quote a good friend of mine, an Italian (Sicilian, no less.) He’s still Mr F — a force to be reckoned with, but one that’s having to deal with a bunch of issues right now.
If you think about what it would be like, you realize he needs friends. Friends who won’t have a pity party. Friends who will help him fight and help him realize he’s not losing face, just facing a tougher opponent, one who fights dirty. But he knows how to deal with that, he grew up in Jersey City — back in the day — Fuhgedaboudit!
My Ode To A Sicilian — in short, “Vaffanculo Parkinson’s” And to Mr F, I raise my glass of Grappa and ask that he not kick this Irish boys ass! :)
Ciao!

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.
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:
For more info and links regarding her story, use these links:
Liz’ original post on Facebook
Time.com article
NBC Nightly News

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. &…

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 w…