Tuesday, February 24, 2015

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.

4 comments:

Lorna A said...

It certainly sucks Bill. Mike and I lost someone last week, a bloke called Ian who was diagnosed the start of 2008. Hell I know I've just named another of your stray kittens, but I think we have to or their passing means nothing.

You have got to keep up the good work for those who just can't do it.

Lorna x x x

Sandy said...

Sometimes I want to walk away and never look back at MM and certainly don't want to befriend anyone who has it, but my SIL still does, and I still need to stay on top of the news, the options, and still need to be a support where I can.

I've lost too many folks to this rotten disease. While my SIL has almost 8 years behind the first RX, Andre has gone, so has Paula and Sean and others that mattered to me... we have to, as Lorna says, tell their name at the very least... and I can't run races anymore, but I can raise awareness.

Thanks for your doing that as well....

rugbyhubby said...

Thank you both. I appreciate the fact that my drivel means something and strikes a nerve! It's my way of venting and I'm glad it's not something that just goes off into the ether! thanks guys!

RW said...

Many thanks for speaking out. In my 4th year now of straight chemo, stem cell end of 2013, moved from thalidomide to revlamide as soon as it was approved, and doing ok. Lost the hair 5 times so far, so just letting it grow free and looking like a beach bum. Every time I start feeling sorry for myself I inevitably end up sitting next to a child on her way to get another bone marrow aspiration, and I am brought back to reality. Does anything help with your fatigue? I try to keep up with exercising but if I was to chart my activity I can see it decreasing 15-20% each year. I was pitching trying to play seniors rugby ( just turned 50 ) to the wife, but she wasn't overly supportive.

My favorite decadron story took place early on. Mayo had sent me to a local infusion center for treatment, and they lost the treatment schedule. Not wanting to look incompetent to Mayo and lose future referrals, they opted to google my therapy instead. They came across someone's early research paper from 10+ years ago, and decided I was to get 40 mg of Dexamethasome daily. Mayo had want 40 weekly. By the end of the third month my liver was toxic, i slept about an hour a day, I ate everything in sight, and I was sensitive to daylight and temperature. I kept mentionng it, and they kept insisting I needed to keep on it. Finally Mayo and they spoke, it was not good. Anyway two months in, a biker group was blocking the turn into the chemo center. In their defense an elderly woman was having a horrid time backing out and had caused the problem. Per my chemical hatred though, I hopped out of my car and cussed out the biker gang - telling them I would move their darned bikes if they wouldn't. They were actually very, very decent about it all, but it did wake me up to just how nasty I was getting and needed to stop. Stop talking or being around people if I couldn't be civil.

Thank you/ Richard