Tuesday, October 7, 2014

Identity Crisis

So here's the deal.  I turn 53 in a couple of days.  Recently I passed 41 months since my diagnosis.  Later this week I do my monthly labs...24 hour urine, urine catch and about 186 vials of blood.  This is followed by a visit next week with Berenson.  My creatinine has been going up, but I blame it on the chemo and my getting lazy on the renal diet.  Assuming my myeloma numbers are all good, we're switching to maintenance next month.  I've done 8 cycles of treanda since my March relapse. It's time to give the body a rest. I think I jacked up my new port already. Painting, working out, blah, blah, blah. It sucks. You want to live normally. You want to work out to stay ahead of the game. I don't want to look sick. Well, I'm not sick. But then again I am sick.  Anyhow, having this balky port is annoying. But my veins don't work so well anymore, so the port is pretty necessary. Phan wanted to take it out. I said no to that. I did ask for an ultasound just to make sure it's still in place, but he wants to wait. He does want me taking antibiotics just to make sure it's not infected. Infections are the mortal enemy, the kryptonite to myeloma patients.

Earlier today I re-read emails from when I was first diagnosed. Bad idea. That was a scary ass time, for everyone all around. Life has changed a lot. In my early posts, I wrote about all the anger I had that came with the diagnosis. I wrote about not wanting to be identified from that point forward as a cancer patient. Like that was some kind of scarlet letter. I'm no longer angry. Well, it's a different anger. I'm no longer worried about being identified as a cancer patient. That's who I am. I can't remember me before myeloma. And I've met amazing, incredible people. Why wouldn't I want to be associated with them. And in terms of anger, I think now it's an anger that results from kind of being in limbo.  Cured? No.  Sick? No.  Doing treatment and being careful? Yes.  I think folks forget that this is what myeloma patients go through. You can't be on alert non stop for years.  But you also can't get hung up little stuff. 

I've also been having those questions about how I got here. Rethinking life decisions from 20 years ago. Wondering where I go next.  As I turn 53, it's important to note I'm just two years from being able to retire from my job. Sounds weird. I feel about 30 years old. But now that I'm coming up on 4 years since diagnosis, how much time do I have left? Could be a lot. Could be a little. But the point is, do I want to spend my days and my energy working? Or do I want to spend my energy and my days living life?  I've got a Vegas trip in November and a Minnesota trip in December.  In the spring I want to investigate other states, other cities. Start thinking about where I could or should move to in two years.  I imagine getting Leslie on board with a  move to Ames, Iowa could be tricky. But it is rated as a top ten place to live.

I got a dog a harness for my Go Pro last week. I really wanted to hook it up to Gracie and film things from her vantage point.  And guess what, I can't find my fricking Go Pro.  Dammit. Anyhow, I was talking to a co-worker yesterday and I was saying how I could retire in two years. Their suggestion was to put in ten additional years and I'd nearly be matching my salary in retirement. 10 years? I didn't say this, but ten years is a hell of a long time for me. Working for ten more years is a non starter.  At that point I'd really be pushing the myeloma limits. Of course unless a cure or better treatment has been identified. Always possible.

But this all boils down to what is next. Keep fighting myeloma of course. And?


  1. Hey Matt - I have been quietly following your blog for a while. I also turned 53 this year. I stopped working 3 years ago. I just could not properly do my job anymore. If you are able to retire in two years just do it. I really didn't want do die behind my desk. I wanted to spend all my energy in dealing with MM. You have to stay positive and optimistic. Of course it's a lot easier to be positive on the days that you are feeling ok. It's not so easy when you feel crappy. Whatever emotions you are going through I'm sure most of MM patients are going through also. You are not alone.
    Mike from NY

  2. I am in favor of retiring Asap. If it's within sight, strike!


Berenson Oncology Success Rate

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