4/21/14 – We’ve Got Some Work Left To Do

Got some chicken on the bone.  Still haven’t crossed the finish line.  However you want to put it … we’ve got some work left to do.  One of the things I HATE about writing this blog is how to write about the days when things DON’T work out.  I’ve got such a good support system of family, friends, colleagues, readers and Twitter followers that whenever things don’t go my way it is difficult to write because I don’t want to let all of you down.  I’ve said it before many times over – having friends like you make it easy to fight Cancer – BUT it makes it harder to share news that doesn’t push me forward.

Today I met with Dr. J and the report was – in my words – GOOD NOT PERFECT.  Basically my Myeloma numbers indicate that I am right where I was before the stem cell transplant in January.  HUH?  WHAT THE HECK DID I GO THROUGH ALL THAT FOR???  M Spike is at .28, Kappa Chains are a little bit high and the Kappa/Lambda ratio is slightly high as well.  On the bright side (SILVER LINING?) is that all of the immunofixation numbers are normal – the IGg, the IGa and the IGm.  In fact, he said that the slightly high M Spike and the slightly high Kappa number might not even be disease related.  Huh?  More things to ask him about next week.

After blood work we went to the results of the PET-CT scan I did this morning.  Still shows bone lesions in the rib area although they are smaller but still an indication of active disease.  The good news from the PET-CT (ANOTHER SILVER LINING) is that the iliac crest the bone with the biggest tumor at diagnosis is practically healed.  Dr. J showed me pictures that were amazing.  In fact if you look at my blog post from 4/15 of last year you can see the results of my first two scans.  In the first the tumor has punctured the bone and there is no bone left.  In the second picture you can see the bone healing or regenerating.  In today’s scan the picture was of a whole bone.  All together – no holes.  THAT IS GOOD!

All in all in Dr. J’s words he said he was “PLEASED” – PLEASED with what I don’t know?  I am really more confused than pleased but I will take pleased and run with it.

We also did a bone marrow biopsy today which is this ridiculous procedure to extract your marrow from your hip bone – OUCH!!!  Imagine the feeling of someone drilling with a hand drill into your hip bone.  Not particularly fun.  Glad it was only my second one in a year and a half.  Anyway – I get the results of that next week on the afternoon of 4/29 and once we discuss with Dr. J we will set a course for next steps.  Dr. J thinks probably a few cycles of Chemo – like I was on before – Carfilzomib, Revlimid and Dexamethasone (CRD) – as consolidation therapy.  But nothing is set in stone.

Was really hoping to deliver better news today.  We all deserved better!  All in all it is pretty much status quo but in the scheme of going through the transplant I was expecting better.  Much better.  All I know is that I haven’t felt better in two years than I’ve felt these last few weeks – so there!

So thanks for all of your kind notes, texts, emails and phone calls.  I am gearing up to finish this sucker off once and for all.  Cancer picked on the wrong guy.

 

4/17/14 – 100 Days

Today is the day. Today is the day where my body supposedly has normalized and I can give my blood and urine to the lab to find out whether or not this transplant worked. I am headed to Dr. J for blood work and then have my follow up appointment Monday where we will find out the results, get a new bone marrow biopsy (ouch!) and a PET-CT scan of my bones to check for lesions and/or fractures.

And I’m not scared. I’m not nervous. I’m not afraid. Whatever the results may be I will deal with it as I have dealt with it all along. I will deal with it through energy, focus, determination and with the support of family, friends and colleagues.

For me – the toughest part is (and always has been) Helene and the kids. If the Cancer isn’t gone how do I tell them. As an adult, Helene can understand it. She’s a strong person. She can express her thoughts about it. But the kids. Why do my kids have to endure this? Why should anyone’s kids have to endure pain or heartache? Never – not once during the past year and a half have I said – ITS NOT FAIR! But when a child has a parent with Cancer – an INCURABLE Cancer with a 5-7 year average life expectancy – well, ITS NOT FAIR. Through the last year and a half the only thing I ever asked for was to spare my kids any heartache.

Being a parent is an amazing opportunity. I have tried to make the most of these last 100 days – while off Chemo – to be present for all their moments. I remember my first venture outside the house after the transplant was to see Ava in her first ever cheerleading competition. I was NOT going to miss that. I spent the last two weekends with Victor at baseball tournaments. Last weekend in a hotel on Long Island – away together – just me and him. He thanked me for spending time with him. There was a happiness inside him that I hadn’t seen before. Sitting on the couch one night Helene said to me – “All he wants is for you to be nice to him.” That really hit home. Am I not nice? Could parenting really be that easy? Just be nice? Admittedly, it’s not that easy. When you are dog tired from work, life’s outside pressures are getting the best of you or you are just in ONE OF THOSE MOODS and your child wants you to watch a YouTube video about poop for the fifth consecutive time – well – I can get a little dismissive. But I am in tune with that now. I WILL watch that poop video if it means so much to my child.

Over the last 100 days I have been to baseball games, cheerleading competitions, soccer, basketball, take your parent to school day and the reading of the 4th grade presidents report. I’ve tried to make the most of 100 Chemo free days because – at the very least – after Monday I will be on some kind of Chemo even if it is just maintenance.

So I have a plan. A plan to show my kids that this is not something to be sad about. Even if the Cancer isn’t all gone we will remain strong and happy. Even if someone throws us a curve ball we can wait on it and smack it right down the pitcher’s throat. It’s called #100happydays. Each and every day I will post a picture on Twitter of something that makes me happy with the hashtag #100happydays. There is a website called 100happydays.com that I registered with to track my progress. Those who follow me on Twitter (bradstrong – @bradcoustan) can see the pictures as well. I don’t know if this website is a scam of someone just collecting email addresses to hack Twitter accounts or not but it seems like a pretty cool idea to me – #100happydays. Because shouldn’t the NEXT 100 days be as good as the last 100 days if not better?

So – day 100 – morning coffee. Ready to hit the city and give my blood to the lab. Positive thoughts as always. There is nothing that can’t be overcome with the right attitude, the right drugs and lots and lots of LOVE.

I will post after my Monday appointment with results!

#100happydays

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Photo by Joanie Schwarz Portraiture

4/15 – Freedom (Day +98)

Anyone who knows me knows that I have a (somewhat) unhealthy obsession with the Statue of Liberty.  EVERY TIME we take the Turnpike extension to the Holland Tunnel to enter the city I have to point her out to my kids.  “Look kids!  LADY LIBERTY!” or “Isn’t she BEAUTIFUL?”  I don’t really know what it is – what causes this obsession of mine with this woman – I just know that I love her and I love how majestic she looks guarding the waters surrounding the lower tip of Manhattan.

I guess maybe it started when I took a trip to New York with my mom many years ago.  This is the Empire State Building but you get the idea:

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The way you could climb to the top and look over the city and plan your conquests.  Map out your territory.  Anything was possible when you were looking out over the top of the world.   That’s how I felt.

Maybe it started when I moved to New York City nineteen years ago.  I used to walk around the city – Times Square, World Trade Center, Statue of Liberty – and wonder in amazement that I lived in the center of it all.  The capital of the world.  Things happened in New York.  Anything was achieveable in New York and the Statue of Liberty was the symbol of it all.  Moving to New York represented FREEDOM for me.  FREEDOM to seek out whatever it was I was seeking.  FREEDOM to figure out the rest of my life.  FREEDOM – quite frankly – from living with the pressures of two families and not being able to please everyone all of the time.  I guess I figured if I moved far enough away I wouldn’t have to answer to either of them.  Right or wrong (and probably wrong) I needed that FREEDOM.

Whenever we drive by that lady I get misty eyed.  She represents my journey.  New York gave me the best three things in my life:  Helene, Victor and Ava.  Lady Liberty represents all of that.

Now I face a different journey.  A journey of FREEDOM from Cancer.  Since December 1, 2012 I have been battling through Chemotherapy, through a stem cell transplant and through the rigors of Dexamethasone – the steroid that rules the emotions.  My family is on the journey as well.  Thursday is day +100.  Thursday is the day that I give Dr. J my blood and my urine in the hopes that he will say that the beast is gone.  And although even if it is gone – it will surely return someday.  That’s what Myeloma is.  But we keep fighting – we keep positive and we keep confident because of all the POSSIBILITIES.  All the new drugs in the pipeline and all of the love and support of our family.

So when Victor and I drove by the Statue of Liberty this weekend on our way out to Long Island and back for a baseball tournament he probably cringed and rolled his eyes when I said “Look Victor!  LADY LIBERTY!”  and “Isn’t she BEAUTIFUL?”

“Yeah Dad…whatever.” was probably his response.  But he sees the world a little differently from me.  I just want him to know that in life – whether its school, baseball or for me – fighting Cancer – the possibilities are endless and anything is achieveable.  FREEDOM.

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4/6 – Day +89 (DITKA)

I couldn’t let day +89 pass with paying homage to the legendary Michael Keller Ditka.  Before we get to the tribute … I feel GREAT.  Spent the weekend watching Victor play baseball in a tournament on Staten Island, hung out with Grandma and Grandpa, my brother Craig, my sister in law Lauren my nephews Drew and Reed and the whole extended family.  It was great being together.  I cherish those moments.

Now for the Ditka tribute.  Mike Ditka was tough.  He took on all comers.  He took on opposing defenses.  He took on George Halas, Buddy Ryan and in this great video he took on Johnny Morris.  Watch until the end.  The look on Mike Tomczak’s face is priceless!

http://www.break.com/video/ugc/mike-ditka-does-interview-in-his-underwear-1621716

Ditka could beat Cancer into submission.  Even with a perm and a sweater vest, Ditka was tough.

 

4/1 – But You Don’t Look Like You Have Cancer

I get that a lot. You don’t look like you have Cancer. What does Cancer look like exactly? Am I supposed to be in bed all the time. Should I wheel an IV pole around with me everywhere I go?

I am fortunate. I am in (reasonably) good physical shape. And getting better all the time (see today’s previous post). I have energy. I can ski, lift, spin, box and even played some basketball this past Sunday.

Don Baylor doesn’t look like he has Cancer either.

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Who is Don Baylor? Don Baylor is a big, strong guy. He played 19 years for seven major league teams. He was named one of Sports Illustrated’s 10 best designated hitters of all time. He hit 338 career home runs and had 1276 career RBI. He won the MVP in 1979. He was a World Series champion in 1987.

Don Baylor has Cancer. In fact Don Baylor (and I) suffer from Multiple Myeloma. Here is what happened to Don Baylor last night:

http://sports.yahoo.com/news/angels-hitting-coach-don-baylor-breaks-leg-on-ceremonial-first-pitch-070234256.html?soc_src=mediacontentsharebuttons

This is a cruel disease. It doesn’t have anything to do with if you look like you have Cancer. Prayers out to Don Baylor.

4/1 – Day +83

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Willie Gault. I remember when the Bears drafted him out of Tennessee. Man, that guy could run! He was fast. Questionable hands but he stretched the field. Sometimes you have enough raw skills in one area to overcome the other stuff.

Sometimes you gotta work at it:

If I work hard enough here maybe I can add speed to my arsenal. Speed like Willie Gault. That way, if all else fails I can just outrun Cancer.

Yeah – that’ll be the day.

3/28 – Reality Check (Day +79)

I haven’t written in awhile and although I don’t like to write just to write – I know some people begin to wonder what is happening with me, my progress and my battle when I don’t write on a regular basis.

Actually things are going along swimmingly.  I feel GREAT - although sometimes have some twinges that remind me Cancer could be lurking.  Of course we won’t know if the transplant actually worked until my appointment with Dr. J on April 21st but those twinges are there and they are telling me to stay the course, think positively and keep on keeping on.  I don’t know if they are bone lesions forming or just regular soreness from working out.  By the way – I have been hitting it hard in the gym.  Kickboxing a couple days a week, lifting a couple days a week and spinning one day a week.  That is the new regimen.  And being off of Chemo for the last 79 days makes it that much better.

So life is REGULAR.  Last night I had dinner with three great friends.  I had a martini.  We shared some wine.  We talked about our kids.  We talked about our wives (with great affection only of course!) and we talked about sports.  And we laughed.  And laughed.  And laughed some more.  And for the night – it was REGULAR.  I wasn’t a guy with Cancer but I was a friend.  I was a REGULAR guy eating a REGULAR dinner with friends.  The way my life would have been all along if Cancer never came.  The way my life should be for the next 40 or 50 years.  But the REALITY is … it won’t be that way.  Multiple Myeloma has no cure.  And although I am confident we will find one in the near future – the REALITY is that I have an incurable Cancer and since December of 2012 my life is and always will be significantly different than it might have been.

But what is REALITY?  I was scrolling (trolling) through Facebook the other day and caught a post from an old friend Darryl Rosen.  Darryl is a successful businessman and now a business coach.  This is what he wrote:

Reality is something we should consider, but let’s not embrace it like a long-lost relative. I have 3 reasons.

1) Most of what we consider to be “real” – doesn’t even happen.
2) When our focus is on “keeping it real” we run from problem instead of solving problems.
3) You can’t solve problems in a negative state because the chemicals floating around in your brain won’t supply enough creativity to let it happen.

So, instead of keeping it “real”, keep it “positive” and there will be a greater chance that reality won’t bite you in the backside.

Well said Darryl!  Well said.  For now – I will enjoy the regularity of my days and nights and continue to keep it positive.  I continue to find the SILVER LINING in life each and every day.  Yesterday that SILVER LINING was my friends – Geltzeiler, Schachter and Weinstock.  Thanks for the laughs and the love gentlemen.  Looking forward to our next get together.

I hope everyone likes the new #bradstrong website!  The redesign also includes a bunch of new stuff including no ads and a new domain name bradstrong.me.

AND – don’t forget to click on the #bradstrong Golfs Against Cancer link to sign up for the golf outing, sponsor the event or one of the 18 holes or just donate.  Your dollars go a long way toward finding a cure!

Thank you!