Friday, December 14, 2012

Mustard vs A Battle for Cancer Supremacy

Not sure if anyone read the story from my previous post.  It's a on-going blog written by a leukemia patient for the NY Times.  As I progress through my journey, it's interesting to me how there are so many aspects to cancer that people don't think about.  The chemo and treatment is just one part of it. There is so much more, it's hard to describe. It's about life, living, appreciating, battling, loving and questioning.

As a former fat kid and someone who worries about their weight a lot, even while undergoing chemo, food is a tricky one for me. I like food. Food is my safe place.  But with the kidneys, I'm on a restricted diet. Restricted and restrictive. Things are especially tricky for me this time of year. I'm a chocoholic. Will power and my love of chocolate are on different ends of the spectrum.  But I can't eat it. Phosphorus in the chocolate can draw calcium into the kidneys, causing further damage.  For that reason alone I'm able to say no.  But there is so much of it floating around the office right now. Occasionally, I'll just pick up a piece, perhaps a Hershey's kiss, and smell it. The smell of milk chocolate is heavenly. Heavenly I say!!!

I've got a bunch of dietary restrictions. No ketchup, no salsa, no guacamole, no beans on my combo plate. Blah, blah, blah.  Luckily, mustard is ok. And I love mustard. Always have. I like it on french fries, onion rings, chicken sandwiches.  Recently I had a conversation with a friend about mustard.  This stuck with me. I was thinking of writing a blog using mustard as an metaphor for blood cancers.  I hadn't worked it all out, but generally mustard is sort of a forgotten condiment. It's not aways appreciated. Remember those Grey Poupon commercials from years ago. A person in a limo is in need of Grey Poupon. Pump up the image of mustard.

The last couple of months have been interesting. We had Pink October, for breast cancer awareness. Everything was pink, even 5 Hour Energy. Kind of annoying. This was followed by Movember.  More annoying. A bunch of dudes in moustaches toasting themselves over their coolness and raising a few dollars for prostate cancer awareness. I'm not saying the causes aren't good. But it seemed rather phony to me. I got to wear jeans at work one day cause I donated five dollars to a breast cancer awareness fund. Come on. 

Where's the movement for blood cancers?  Where's the love for mustard? Did you know that September is Blood Cancer Awareness month? 20,000 new myeloma cases a year. Thousands and thousands of people die every year from myeloma. Where's the fanfare? Where are the NFL players wearing blood red gloves?  As I said in a recent blog, my previous perception of fighting cancer was much different.  I had next to zero idea that the fight could go on for years and years.  I'm at 19 months.  That's nothing, many folks have decades of battling their disease.

And I also mentioned recently, that I was wondering when I stop talking about it. Cancer shouldn't define me, but how do I get away from that definition when every day I'm dealing with it? I'm getting better at ignoring it though. Chemo? Just something I do every couple of weeks. Visiting Dr Phan and the nurses is like visiting family.

When I was diagnosed, I sent an email to a few  individuals who I work with. I tried to keep it positive and told people to not believe the hype, if they were to happen to look up multiple myeloma.  I knew word would spread and I was ok with that.  But I also wanted to keep my diagnosis low key.  I don't like a lot of attention. Never have. Mustard also doesn't like the limelight. Mustard leaves it up to ketchup to get the kudos.  I wish I could be more out there. I've never even sung karaoke.

Recently I was in urgent care. Nothing related to cancer. But as I sat there among people who had the flu or allergies or a sprained ankle, I felt a little indignant. I'm a cancer patient dammit and shouldn't have to wait two hours to get a shot. I get shots all the time. Move out of my way. 

You know,  I'm a little on edge most of the time. It's always game time for me.  Going to work today? Nope, you're getting an ultrasound because your port might be infected.  Walking the dog? Nope, you're a little tired.  Lately, I've wondered why I didn't make a bucket list.  There are days, when I am convinced the myeloma is going to kick back in. There are days I think that death is just a day away. Not every day mind you. But some days. And it's not the dying or myeloma that really worries me. It's the living. Or not living. I need to lead a meaningful life. I need to be adventurous. I need to speak my mind. I need to ride a bike across the country. I need to wear loud clothes. But in my advancing years, I've become a cautious person. When I was younger I typically flew by the seat of my pants. No regard for the future or how my actions might impact others. I look back with more than a hint of regret, I think it's fair to say. Yet here I am now, fearful of change. Again, don't get me wrong, things right now are great. I'm thriving, I'm married, great wife, great dog, great family and friends. My confidence is at an all time high. Weird how that works. But I'm also feeling a bit like a loser. Get up and do something Matt! I'm paralyzed by fear in a way.  Why? What do I have to lose? I have an incurable cancer for crying out loud.  I should shout that out as I rob a bank. Not that robbing a bank is on my list.  I loved that guy who recently sky dived from 24 miles up in the stratosphere. What balls. What bravery. I used that image when I jumped into a freezing cold pool on our honeymoon. If he can jump into space, I can jump into cold water.  But what else am I doing? What else is mustard doing? Let's push the limit together mustard. 

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Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.