Multiple myeloma (myelo- + -oma, “marrow” + “tumor”), is a cancer of plasma cells, a type of white blood cell normally responsible for producing antibodies. In multiple myeloma, collections of abnormal plasma cells accumulate in the bone marrow, where they interfere with the production of normal blood cells. (Wikipedia)
Sunday, January 31, 2016
Friday, January 8, 2016
(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.
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!
Wednesday, August 5, 2015
Sunday, June 7, 2015
Tuesday, April 21, 2015
Saturday, April 11, 2015
Tuesday, February 24, 2015
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!
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.
Tuesday, September 30, 2014
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!
Wednesday, September 24, 2014
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!
Tuesday, September 23, 2014
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
Thursday, September 11, 2014
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!