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7/25/14 – The One I Wish I Didn’t Have to Write

As I have said all along, the toughest thing about keeping an honest blog – an honest account of my journey – is writing bad news.  My Myeloma blood results came back this week and they weren’t very good.  I could actually re-title this entry into “The Good, The Bad and The Ugly” but I think I have used that one before.

First of all the good:  As far as the heavy chain proteins they are all normal.  IGg – the one which would be high in an active Myeloma environment is at 1155.  Normal range is 700-1600.  While there is some comfort that this is a normal reading it hasn’t been this high since January of 2013.

Second – the bad:  The M Spike continues to persist.  It measured at .42 in this report.  That is down from .46 in the previous but as we have discussed needs to be at zero.  The M Spike has not been this high since October of 2013.  It is almost the same (.53) as where it was in February of 2013.  We did achieve a zero M Spike for a while in May/June of 2013 so it is attainable.  There is a goal here to hit.

Third is the UGLY:  My Kappa Chain proteins came in at 263.78.  That is REALLY, REALLY high.  In fact it is 10x higher than normal.  This is the marker that has been concerning us lately.  It was at 45.39 in August.  It was at 26.89 in April at my 100 day appointment.  Normal reading is 3.30 to 19.40.  The last time my Kappa Chain was this high it was December of 2012.  Three weeks after my diagnosis.  The Kappa/Lambda ratio – the difference if you will between the two forms of light chain protein – is also as high as it has been since December 2012 as well.

Myeloma is back.  Cancer is back.  And this time it is being a real bitch.  Obviously our choice in treatment is not working so we are looking to change it.  I spoke with Dr. J yesterday and it looks like we will discontinue the Velcade and go back to Carfilzomib which gave me such a good response before.  So I will be taking a combination of Carfilzomib, Pomalyst and Dexamethasome for the foreseeable future.

In the mean time, I have a previously scheduled appointment at Memorial Sloan Kettering on Wednesday with their transplant team to start the process of the T Cell Depleted Allogeneic (Donor) Transplant as described here.  

Dr. J is also researching some clinical trials for me to enter as well.  And here is the funny thing…the SILVER LINING in all of this.  I don’t feel like I have Cancer.  At all.  I feel great.  My energy is high – although I went through a period where I was getting really tired a few weeks ago – my energy is great.  I am in great shape and I don’t have any of the associated pain I had when I was diagnosed.  I told Dr. J and I told Helene – I KNOW WHEN I HAVE CANCER and I FEEL GREAT RIGHT NOW.  But I can’t help but think of the warriors who fight or fought before me.

I can’t help but think about my Twitter friend Tom Kowalski – who you can read about here.  Last June Tom was sending tweets about the Blackhawks games and eating at Demon Dogs.  A few weeks later a tweet went out the said #RIPTomKowalski.  That is how quickly this can turn on a dime.

I can’t help but think of my friend Andy Miller who seems to be right in front of me on this journey.  Andy had his auto SCT a few months before me, then he had a second and his Myeloma numbers started skyrocketing.  He was in such intense pain that he was admitted to the hospital for 96 hours of continuous chemo and is now searching for a donor for the T Cell Depleted Allo Transplant.  You can read about Andy’s story (and contribute to his family) if you like here.

Andy has been such a good friend.  We text back and forth on occasion and keep each other’s spirits up.  The fight against Myeloma is tough.  Andy is one tough dude.

So… where does that leave us?  Where does that leave the Coustan family?  Really – nowhere different than where we were before.  I feel GREAT.  I always said I really don’t believe that I have Cancer at all.  That is somewhat true now.  The numbers don’t lie…or do they?  My blood says I have Cancer but my heart and mind are in denial.  And I will remain in denial until I can’t do the things I need to do or the things I love to do anymore.

That doesn’t mean I don’t continue to fight.  Because those things – family, work, writing, working out, my shitty golf game, etc ARE WORTH FIGHTING FOR.  My job over the next couple of days is to get myself super organized so that I can take on all comers – AGAIN.  I have to set my treatment schedule, my work schedule, my family schedule, my writing schedule and my workout schedule so that everything fits and everything has its place.  This reduces the stress of trying to fit everything in at once.  I have to get back on a stricter nutrition plan again.  Since I have been feeling better my nutrition discipline has fallen by the wayside a bit.  I will be back researching the angiogenetic foods and beverages to eat and stick to that diet plan again.  I will be back to acupuncture again.  I will throw everything I have – every weapon I have – into beating these numbers down because they don’t define me.  I define me.  How I feel defines me.  The numbers are WRONG … again.

Again – let me reiterate – I FEEL GREAT.  Numbers, shnumbers … although I am more sensitive to each and every tingle in my back and each and every twitch.  Last night I was outside with Victor.  As part of his commitment to be the best baseball player he can be he takes 75 swings (25 outside corner, 25 inside corner, 25 middle of the plate) off of a tee into a net every night.  EVERY SINGLE NIGHT.  I walked out in the backyard as the sun was setting and watched him methodically swing.  Over and over again.  After he hit the 75th ball I teed one up for myself.  As the bat came through the zone and the ball flew into the net I felt a twinge in my back.  The first thought was … CANCER… MYELOMA … but alas – probably just old age.

7/17/14 – Hugs and Hand Pounds Part 2

If you know someone who is fighting Cancer and you probably do given the fact that you are reading this blog then you might want to take eight tiny minutes from your busy day to watch this

http://m.espn.go.com/general/video?vid=11225895&src=desktop&rand=ref~%7B%22ref%22%3A%22http%3A%2F%2Ft.co%2FBm13NUNQuZ%22%7D

I wrote about ESPN SportsCenter anchor Stuart Scott here:
https://bradstrong.me/2013/01/16/115-hugs-and-hand-pounds/

Stuart just received the Jim Valvano perseverance award at the ESPYs last night and his speech brought me to my knees in tears.

I have written much over the last 18 months about my journey and much of what Stu said and did goes through my heart and mind every day.

1. He said “When you die you don’t lose. You BEAT Cancer by how you LIVE, why you LIVE and in the manner in which you LIVE”

I get a ton of comments on how I live my life … The MANNER in which I live. It’s the only life I have so I am going to LIVE it while I HAVE it.

2. Another thing he said is that you have to fight like hell and when you are too tired to fight you have to lay down and rest and let someone else fight for you.

Often times I have written that as long as I am strong – as long as I feel good – it is my RESPONSIBILITY to fight for those who can’t fight for themselves. It is my DUTY to take away the burden of fighting Cancer from those too weak to fight.

3. Then he went on to speak about the 1000s of people who encourage him every single day.

That support for a Cancer survivor – scratch that THRIVIVOR (that’s my term for the combination of surviving and thriving since my Cancer is technically incurable) needs. I get that from all of you. Whether it’s a comment, a text, an email or a hug. That support is meaningful beyond ways that I could express.

4. Lastly, I lost my shit when he called his daughter to the stage. Anyone who reads this blog knows that the toughest part of all of this is my children. Having Cancer is easy. Trying to figure out how my children process it day in and day out wrecks me up. Everything I do – EVERYTHING – is filtered through how it impacts my family – Helene and the kids. They need to know that I ALWAYS had their back and I always will.

Stu – brutha – YOU are not alone. Congratulations on your award, your perseverance and for bringing down the house last night. When you are too tired to fight I will fight for you. Promise me the same.

Powerful, inspiring stuff.

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7/14/14 – Cooperstown Part II – Lessons Learned

Doesn’t that smile say it all?

I should also mention that the way our boys (or probably most 12 year old boys) play the game of baseball is the way Cancer patients ought to face the disease.

First – Fight the disease with ferocity.  12 year old boys are goofy.  They love to good off.  They love to tease each other, their siblings and their teammates but when they step between the base lines all effort is directed toward winning THAT game at THAT time.  The competitive juices flow.  That’s the way we need to fight Cancer.  With EVERY OUNCE OF STRENGTH WE CAN MUSTER.  With CONFIDENCE.  With FEROCITY.

Second – Have a short memory.  As I said in Cooperstown Part 1.  Win, lose or draw the memories of the game’s statistics fade but the memory of the experience never will.  Numbers can go up or down.  A Cancer patient can’t pay attention to the day to day.  A Cancer patient has to pay attention to the trend.  To the long haul.  To the experience.  Even when my numbers suck (and sometimes they suck) I have to take a positive experience away from them.  I have to stay positive and forward looking to keep my hope alive and give me strength to fight on.  Bad numbers?  Fuck it.  The next set will be better.  Short memories.  If I forget about the bad stuff and only remember the good stuff it makes it much easier.  Like I said before – I don’t even believe I HAVE Cancer.

Last – Enjoy every moment.  As a Cancer patient you face your own mortality every single day.  I have – over the last 18 months – enjoyed every moment of life from work, to my writing, my radio appearance(s), and my family.  I live for every hit, every runner thrown out and even every time he strikes out.  I live for my daughter to hit that back handspring round off and I live for her every soccer goal.  I live for nights home with my wife – even if some of them are spent watching the Real Housewives of Somewhere.  I live for being together.  I live for every moment I am with my family.  Take it all in because you never know when it all gets taken away.

Shouldn’t life be like that for everyone?  But with Cancer patients especially.  The key to success – I am convinced – is PMA, positive mental attitude.  I will beat this (that is…if I really have it) and anyone who tells me differently can go “f” themselves as far as I am concerned.  I fight ferociously.  I have a really short memory.  AND – I live for every moment.

Stan Musial – Victor told me after he read the plaque – played in 24 all star games.  I’ve got at least 24 all star years of fighting Cancer left in me.  And 24 years of hall of fame moments to embrace.

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7/11/14 – Cooperstown

I said I had two posts to write this week. One on the golf outing and one on our 12U baseball team trip to Cooperstown. Here is the first.

For those who don’t know, there is a 12 year old baseball tournament held in Cooperstown every year. For 12 or so weeks of the summer teams travel to the home of baseball to play in a week long tournament at Cooperstown Dreams Park – a facility with 23 baseball fields that holds 104 teams. The boys sleep in the barracks with the coaches on premises while the parents stay at the Holiday Inn Express down the road.

Dreams Park is a little slice of heaven in upstate New York. For a baseball obsessed nut like me, it was nirvana. It is a place where you are required to wear your cap forwards and wear your socks high. Tradition! For the boys of our 12U travel team it was the culmination of their travel baseball experience and what they have been aiming for the past five years. For the parents, it was a place where all of our anxieties and insecurities about our children were out in full force!

Because the focus of five years of baseball has been pointing toward Cooperstown, the pressure to perform was intense …. for US AS PARENTS. The boys? The boys feel no pressure at all. And THAT is what made this week so special.

You see win, lose or draw our boys will remember most sleeping in the barracks, swimming in the Holiday Inn pool on their “night out” or trading pins with the other 103 teams from all over the country that were there to compete. As parents we live through our children. Each home run, each strikeout, each brilliant defensive play and each error pumps us up or breaks our collective hearts. The kids? The kids play the game and no matter the result smile and walk away.

I have written time and time again about how the little things in life matter most. And to these 13 young men – being there, being present and being a contributor in any way – is what mattered most to them.

We had some unbelievable successes. One boy hit NINE home runs for the week over the fence – a Westfield record. We took great pride in watching a couple of kids hit their very first home runs of their careers. There were great defensive plays, big clutch hits and timely pitching. There were other times when we didn’t come up big in situations, got thrown out on the bases or threw the ball around too much. But what mattered most to me – what I got the most joy from – was seeing every kid contribute over an eight game stretch in some significant way. We won four of eight games, ended up in the top 40 teams of 104 and each boy had a hand in making that happen. Each boy had his moment.

Victor is a catcher. He’s a pretty darn good one. But Victor’s Cooperstown moment didn’t come behind the plate. It didn’t come up at bat either. Victor’s Cooperstown moment came when he was asked to pitch. With eight games in four days a team is going to have to rely on everyone to pitch. Victor entered the game and pitched 2 2/3 innings and only let up one run – UNEARNED he would tell you. For a kid who doesn’t normally pitch, he was pretty excited about that. Forget about the fact that he nailed a bunch of runners stealing throughout the week when he was catching. His shining moment came as a pitcher. And everyone had a shining moment like that. Helping your team in an unexpected way. Answering the bell in the tournament you have been focused on for five years.

And that’s the way it is for me as a Cancer patient. Some therapies are home runs. Sometimes we strikeout. But each day is a new game. Each day holds another chance to hit the ball out of the park. Each day I wake up is a day closer to a cure and if I can get myself to the ball field each day someone on my medical team will contribute to my ultimate goal – REMISSION.

The other joy – for me – was watching our boys interact with each other, with other teams from all across the country and the way they supported each other and hung together. They were great representatives of our community. It is bittersweet to watch your kids grow up so quickly. There are indelible moments that I want to freeze and just stay with me. Our boys are so grown up. Our team has been together for five years and this was kind of a graduation. They started as rambunctious 8 year olds that goofed around the whole practice. They graduated as friends and teammates with great memories and dreams fulfilled. They left Cooperstown with a healthy respect (I think) for the game of baseball but also with a healthy respect (I know) for their teammates.

The one draw back for Victor was that he only got to spend 90 minutes at the actual Hall of Fame. For a kid who doesn’t read much he spent his time reading each and every plaque with the statistics of all the hall of famers. He was upset that he didn’t get to finish. I sense there is a father/son weekend coming up in our future to visit the Hall again.

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7/4/14 – Birthday

I haven’t been able to post in awhile – which is a GOOD thing. It means things are going well and that I am busy.

I have three blogs to write this week so those of you who follow will have plenty to read. I need to write about the golf outing still. I haven’t had much time to decompress yet. I also want to write about the experience of Victor’s baseball tournament in Cooperstown. I wrote about dreams a few weeks back and watching those 13 boys live a dream was absolutely magical.

But today is a special day. Today is a milestone. Today I turn 47 years young. I never thought birthdays were a big deal. Mine happens to fall on a national holiday so sometimes it gets lost in the overall celebration of the USA. I never minded. In the past 12 years since Victor was born and subsequently Ava was born, life was all about the kids. I didn’t want to fuss over my birthday. I just wanted to spend it with them. I wanted to spend it with Helene. And that is what we do every year. We hang out back by the pool. Friends and family come over. We BBQ, we swim and we enjoy each other.

This year is a little different. This year it is raining. Hurricane Arthur will force me to chart a new course for birthday 47 and that’s fine. Life doesn’t always go as planned – as we found out all too well in December of 2012.

I will spend my 47th birthday chasing dreams. I woke up and hit the gym with Lori the trainer at 6:00 AM – chasing the dream of beating Cancer through better health. Chasing the dream of not gaining 20 pounds in this current round of chemo. I then came home to the birthday cards and gifts from Helene and Victor (Ava is at camp) which will help me chase the dream. A gift card to the new sporting goods store in town and a watch that counts how many calories I burn during the day and during the workouts.

I then will probably find somewhere to have breakfast out. Those who know me well know how much I love to eat breakfast. I can eat an omelet three meals a day. I love me an omelet. I may even step up for some corn beef hash with a candle in it as well.

I just finished an article for faketeams.com. That is the fantasy football website I have been writing for in my (not so) spare time. Chasing dreams. Hopefully this one will give me something to talk about in my next radio gig. Chasing dreams. If you really want to help my “career” give a comment in the comment section.

http://www.faketeams.com/2014/7/4/5869825/fantasy-football-buy-sell-or-hold

I will end the day just as I have every other birthday since the kids were born. Dinner out with family.

To paraphrase the line from When Harry Met Sally – “when you know what you want to do for the rest of your life you want the rest of your life to start as soon as possible.” That’s where I am at. I am really in a good place – Cancer or no Cancer. I am tolerating this cycle well. I am thriving at work. I am in the best physical shape I can ever remember being in (well, except for that Cancer stuff) and I am chasing my dream of writing and broadcasting. I have a family that loves and supports me that I love back with everything I have. What could be bad about that?

I tweeted out a picture of Victor and I from Cooperstown at the Baseball Hall of Fame the other day with the caption: Cancer may take lives, but it can never take moments. I live for the moments. I live for the milestones. I don’t count the years down – I count ‘em up! The nurse at Mount Sinai asked me yesterday what my favorite birthday was. I answered: “The NEXT one!”

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6/27/2014 – Photos From the #bradstrong Golf Outing

6/27/2014 – Photos From the #bradstrong Golf Outing

Click the link above for pictures from our golf outing this past Monday.  I can’t thank our sponsors, attendees, donors and volunteers enough.  I will be writing more on this later but want to get the pictures up as soon as possible.

It would be impossible for me to write with clarity about the day until I decompress, regroup and think about how deeply humbled, happy and grateful I am to live, love and be loved.  The pictures will not do the day justice and neither would my writing.

My gratitude is unparalleled. 

#bradstrong

6/17/14 – I Choose …

POMALYST. The blood came back uneventful so I figure better to start right away. I still don’t believe I have Cancer. I think the numbers are wrong. I start Cycle 13 – Pomalyst/Velcade/Dex Monday.

On another note: Father’s Day has come and gone. Another milestone achieved. Here is what each of my kids posted on Instagram in my honor. God I freakin love them.

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And LAST BUT SURELY NOT LEAST today is Helene’s birthday. My caregiver. My wife. Caregivers get lost in the shuffle of the patients but Helene hasn’t left my side from day one. She knows when to push me and when to back off. I could live 1000 years and it wouldn’t be enough time to let her know how much I love her. She is THE ONE IN WHOM MY SOUL DELIGHTS. Forever and ever.

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