Wednesday, February 6, 2013

Get My Head on Straight aka Broken Record

See the subject of this post.  This is what I need to do. ASAP.  This has been a tough week.  As I've mentioned before, typically day 3 or 4 after chemo, I'm tired. But usually I fight through it and recognize it for what it is. I generally don't get too bothered by the tiredness. This week though, Monday particularly, I was unusually tuckered out. I had chemo last Thursday.  So I thought I might be low on blood and in need of a transfusion.  And more than that, I was worried that my bone marrow finally took a huge dump after 21 months of chemo, steroids and, oh yeah, a blood cancer.   My whole life I've been a early riser and can bounce out of bed with energy.  Not so much anymore, and earlier this week, it really wasn't the case. I was moving slowly.

This is bullshit, was my mind's response to this. I hate the tired feeling. But I also have to remember that I'm 51 now, so slowing down is only natural.

The good news? I asked Dr Phan if I could do some blood work yesterday.  I was pleasantly surprised by the results.  My blood count is low, but not too low and not too different from what it has been over the past many months.  Creatinin, one of the myeloma metrics, is still below 4.  The positive trend continues. So it's all good, physically.  That leaves the mental aspect. My mind is playing tricks on me.

The mind. It's becoming a broken record for me. The myeloma has changed me, I'm a very different person. That's what I tell myself.  But I go to work, just like I used to. I sit in lots of meeting, just like I used to. I come home and watch tv, just like I used to.  I ask myself, how is being a new person manifesting itself in how I live my life. That's a tough one.  In many ways, I am sick of hearing myself.  It's almost a blah, blah, blah effect. Just words running through my brain.  And this gets to me needing to get my head on straight.  What can I do to mix things up? What can I do, instead of waiting, worrying for the myeloma to act up. That is clearly not productive and not healthy. Stress is the enemy of cancer.  Me worrying does not help me heal.  Me moving and being active and having goals to shoot for is healthy and health inducing.

That's why I set a target date for riding my bike to work again. That's why I am thinking about  a multi day bike tour that lets me prove to myself that I'm ok.  It's odd when I think about 21 months ago.  Friends and family all made a point of visiting.  I think we all thought things were pretty dire.  And in many ways, I feel like I've come through this on the other side.  I got through the scary dire part of it.  Now I need to embrace life and embrace pushing myself  and embrace new challenges and facing fears.

At work this week, I've had to abandon my passive aggressive modus operandi and instead be clear to certain folks that they are fucking things up and my direction needs to be followed.   In a way, I'm having to tell folks I'm a man and don't fuck with me.  I've never been someone who preens around with his feathers in full display.  But in many ways I need to now.  I need to grow up. I need to assert.

There's a job that I'd love to have. I'm going to lobby hard for it. I wouldn't even consider leaving what I am doing now for anything else, other than this one job. This one job, for me, would be so fantastic to get.  In fact, I'd dominate the job. I'm made for it.  But there is also a voice in my head, saying if I can get this job, that I'm making a massive statement about living with myeloma and living with cancer.  It's shouldn't be a death sentence.  Mind you, I'm lucky that I have  the most amazing doctors and I've responded so well to treatment.  When I have the tired feeling like I had earlier this week, it's real hard for me to see beyond that and difficult to imagine having energy to send a message to myeloma that I can't be stopped.  But I need to occasionally slap myself and tell myself to snap the F out of it. It's a balancing act, but it can be done.

1 comment:

  1. Matt - You need to know that you have inspired ME along with many others. You will wake up tomorrow .. and the next day, and the next day. Live for that. Go get that job! You are through the hard part and you have accomplished more over the last two years than most people will in their entire lifetime. Go pay yourself back. Get that job!


Berenson Oncology Success Rate

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