Let's Cure This Thing!

I know I haven't been writing here so my updates on Medium.com (you can find me https://medium.com/@PromotingGHL) don't flow through here automatically.  Which means you haven't seen my latest push for donations - don't stop reading now!!!

In January I had my tests to see if the MM was back and in February I got the news I had relapsed, after 5 years in full remission.  In between those two dates I received a call from The MMRF asking me to be the Spirit of Hope honoree at this year's Laugh For Live event on May 1st.  It was very awkward because I didn't feel like I had really done anything.  After I started posting about my relapse I really paid attention to the responses and realized that maybe I do have something that inspires others.  Again, it's awkward but I am truly appreciative of the award.  But how do I ask for donations to an event where I am being honored.  The answer - Deadpool gave it to me.

I have all the detail here: http://bit.ly/billdonate.  In short, Ryan Reynolds posted a video, in a pink Deadpool outfit, and spoke about how he was raising money to F cancer.  It made me realize I want to cure my cancer - why aren't I raising money!  In the link above I explain this more eloquently and also highlight what I will do if we reach out targets!

So have a read, share the story and help us raise that money!  And if anyone knows Ryan Reynolds please put me in touch - if we reach that 1 million goal then I need him to decide what to do with that tattoo on my head!

thanks for reading!  

Wow, It's Been A Long Time!

I've started writing on Medium.com which means I've stopped writing here.  In addition to that, I was cancer free from my transplant till my 5th year anniversary - almost to the day.  With that said, below area  few links to my most recent posts on Medium and here is the text of my last post on Medium.  s always, thank you for reading!

It's Not The Chemo...
Fighting Again...
My Re-Birthday

It’s Not The Chemo…

The last few weeks have been a roller coaster. There are a number of things being juggled right now but the funny thing is, it’s not the chemo that’s causing a concern. Sure, the disease is back, I’m back in treatment, but that was the least of my worries. Here’s my most recent timeline, so you can get caught up on the craziness:

• Feb 7 — The decision is made, my January biopsy and blood work identified that the disease is definitely back and it’s time to take action. Feb 28 is my first date for treatment.
• Feb 23 — I get an Explanation Of Benefits, via SNAIL MAIL, from my insurance company that the treatment plan has been denied as “not medically necessary” (again, treatment was scheduled for Feb 28 , 5 days later— so I went and got a tattoo!)
• Feb 26 — I am told I will be on a clinical trial, but will need tests first, so treatment will start Mar 8.
• Mar 2 — a littany of tests: echocardiogram, EKG, skeletal X-ray, bone marrow biopsy (again), blood work, urine, etc.
• Mar 8 — I arrive for my first day of the clinical trial. They insert the IV and then the NP tells me I was denied the clinical trial — I am “relapsed” not “refractory” — this is a good thing but it didn’t feel like it at the time.
• May 8 — I raise holy hell!
• Mar 9 — I begin a “standard of care” treatment that is easily approved by insurance and start day 1 of my Daratumumab and Velcade immuno- and chemo-therapy regime.

Honestly, the chemo has been fine but the roller coaster of emotions and decisions over a three week period was simply mind blowing. Unlike the chemo that many others take, where they are sick for days or weeks after, the side effects for me have been minimal. That being said, the Dara is closely monitored for the first two sessions as it will cause allergic reactions. My Day 1 had an arrival to Mt Sinai at 0750 — my departure — at 2134 (for those not accustomed to military time 7:50a to 9:34p). I gave up Lent after that and had a beer — i’ll make my peace with the big man above!

Every time I had an allergic reaction they had to stop the infusion, give me something to address the reaction, and then wait 35–40 minutes for that to kick in. Then they re-started the infusion, at a very minimal rate, to see if the reaction returned. I had two reactions with the second being in the early afternoon. With 700ml of Dara remaining, they re-started the infusion with the rate at 25ml/hour. If we were doing 100ml/hour that would be seven hours! It took an hour at 25 till we could increase to 50. An hour later we increased to 100, then 150 then finally 200, the max. It was a long day.

Day 2 (which apparently is Day 8 in treatment-speak) was easier and I had no reactions. Still it was from 0700 to 1720, so a long day! This week I had my first real side effect, which was simply an achey feeling. It was like the flu without the flu-like symptoms. Moving just ached — the shirt moving on your skin didn’t hurt but it was sensitive, like sun burn. The docs gave me Dex, which did help, but caused me to not go to bed till 0100 last night (this morning) and I was up by 5 with one time awake in between. The only other side effects were caused by the Velcade. The Velcad is delivered sub-cutaneous, a shot that goes into the fat in your belly, just under the skin, but before the muscle. The first one left me with a bright red mark, that was hot and did hurt like sunburn. Not bad but noticeably irritating. The second shot had a similar reaction but not as bad. I’ve used Aquaphor to keep the area from getting too dry.

Day 3 is tomorrow and should be quick (relatively, but still guessing around 6 hours). That is my update. Thanks for reading and I’ll have an more info on everything else in the next day or so!

Cheers and keep fighting!

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!

There's A Cure Coming...

(Originally posted on Medium.com)

...Just not in time.

For those that have seen my profile here you know I was diagnosed with a form of cancer called Multiple Myeloma. This is the same cancer that Tom Brokaw, Peter Boyle, Roy Scheider, Geraldine Ferraro and Andrew Miller have/had. That’s an A-list of celebrities and unfortunately three of them are gone due to this disease.

The last name on that list is a friend of mine, not a celebrity in the true sense of the word. He went through his stem cell transplant about a month after I had mine. In fact, I had three friends that all went through their transplant within a month of me: Bob, Steve and Andrew. Multiple Myeloma has many faces and luckily, for me, my version of the disease isn’t as aggressive, or scary, as others. Multiple Myeloma is a form of bone/blood cancer. The proteins in your blood, those anti-bodies that are supposed to help your body, go rogue and start taking over the bone marrow. Many people aren’t aware of the disease until it’s taken over the bone marrow and started eating away at the bones, releasing calcium and protein into the blood stream which causes other issues for your kidneys, etc. So there you are, thinking everything is ok but your back is sore and you’re tired. You have kids; you don’t work out enough; you’re getting “old”. These are all the things you say till one day a vertabra collapses and you get told you have Cancer. If this doesn’t scare you into going to the doctor once a year I’m not sure what will.

So my transplant was in January of 2013 and I have been in a complete remission ever since. A year after my transplant I ran up the Empire State Building (ok, walked quickly…well maybe crawled by the end.) Exactly one year after my transplant i was running up the Empire State Building, 86 flights; a bunch of stairs. I did it because I could and they couldn’t. At the time I ran the race, Bob was back on meds, Steve was back on meds and Andy had gone through another transplant. Here I was, no longer on meds, running up King Kong’s building while they were back on chemo and steroids.

Why am I writing this? Because I can.

Two years after my transplant Steve lost his fight and I wrote The C-Word and “Stray Kittens” — don’t name them and it won’t hurt as much — too late. My last doctor’s visit was just over a month ago. At that visit the doctor confirmed that my numbers are still good and the disease isn’t present. I return to the Doc in April for a bone marrow biopsy and PetCT. To give you a little background, a blood test provides a 30,000 foot perspective, we see no sign of the disease in the blood stream. The biopsy and PetCT is more similar to Google Street View. This looks straight at where this mess is made and looks for the disease at a cellular level. If, after these tests, they still don’t find any trace of the disease my doctor has said my long-term prognosis is 10+ years and he believes there will be a cure within that time frame.

A cure.

I’ve always believed there would be a cure in my lifetime. And now my doctor has said this thing — a cure in my lifetime.

The only issue is I’m not talking about my lifetime.

As I mentioned, the disease has many faces and I got the not so nasty one. Steve wasn’t so lucky. And now, neither is Andy. Andy’s gone through two or three “auto” transplants (using his own stem cells) and one “allo” transplant (using someone else’s stem cells.) But Andy’s disease is one of those nasty versions. It has been plugging away at him like the Harlem Globetrotters on an unknowing college varsity team. I saw Andy just before Thanksgiving and he was starting a new round of chemotherapy. Spirits were good and he was looking great; but he needed to keep fighting. I saw him again, just before Christmas, in the hospital — and he had lost the ability to control his legs. Apparently he had an accident some time after thanksgiving, when he just lost all feeling below the waist. A fall, a call to 911 and a quick ambulance up to NYC and he’s doing PT and back on chemo.

Andy’s been fighting — they call it Miller Strong — and it has sucked. So many drugs, so many issues, so much stuff he has had to go through. So much stuff his family has had to go through. Anyone with cancer, especially when it’s this aggressive, has to go through things nobody else can understand. But Andy has to take it to another level.

You see, there will be a cure in my lifetime but it turns out there won’t be one in Andy’s. And this is the toughest part to write — this is the part that I can’t imagine having to face. You see, the docs have made the decision that the fight is over. There aren’t any more drugs he can take. The disease has won. He’s in hospice, finally off the drugs and trying to enjoy his final days. With his family.

And I can’t imagine being in that situation.

Andy would want you to remember him as a fighter. He was a wrestling coach and a big man with a bigger smile. So my note to you, aside from thank you for reading, is go to the Doctor — every year. Don’t put it off, go to the doctor and check to make sure you’re ok. I was diagnosed with a simple blood test, a protein spike specifically. I caught this disease before it could do any serious damage. Maybe you can do the same. And after the doc’s visit, when you find out nothing is wrong, you can thank Andy. You’ve become Miller Strong!

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….embarassing. EMBARRASSING 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!

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.