Sunday, May 26, 2019

Bonus Time

I'll admit it, I'm feeling good right now. I've been on darzalex and pomalyst for about 2 and a half years. I just got my latest lab results and my numbers are as good as they've been since I was diagnosed, and probably better than from before I was diagnosed. It's interesting, you look back on a few things and you wonder how long you had myeloma before it was diagnosed.  Like how I tried to donate blood in 2009 and I was denied and told to go eat a steak because I was anemic back then. Anyhow, I'm getting in good shape, volunteering, taking classes and all is well.

And I'll also admit this, feeling this good makes me a bit nervous. 8 years. Honestly, it's exceeded my expectations.  There's nothing really special about the number 8, but since May 2, I really feel like I'm on bonus time. This is all gravy...provided I keep feeling well and keep checking things off my theoretical list. I haven't yet put together my 30 by 60 list, but it's in progress and I'm working on stuff already.  Plus, no one really knows how long darzalex will work. It doesn't work for everyone, it's a newer drug. And it's not like I'm waiting for it to stop being effective, but I ought to prepared for that eventuality

In April 2011 I went to Las Vegas for a friend's birthday. I was there for perhaps 3 hours and I got so bleeping sick. Fever, chills, uncontrollable shiver. I went to bed at 5 in the afternoon scared out of my mind. The next morning, I had a powerful sensation that I was dying. I flew home that day. The next day I went to a doctor to discuss why I'd been feeling weak and tired and fatigued and sweating at night and so on. He had me do a simple blood test as a normal thing before I'd do a colonoscopy the next day.  He called and said I needed to be in the hospital because I was super anemic. Like how was upright type anemic. I was hospitalized that day for a week or so. A day after my hospital release I was diagnosed with myeloma.  The next day I got a port, full body scan, transfusion and started chemo. And the rest is history.

I think in 2013 I went to Vegas with a friend. But I really wasn't feeling good, so I'm not counting it as a visit.  Tomorrow that friend and I are going back to Vegas and I'm viewing it as my first visit since being diagnosed. I'll definitely stop by the Mirage and have a beer at the bar where I couldn't finish a beer 8 years ago because I felt like crap. I'll walk through the casino where I had the "I'm dying" sensation. Wow, writing this sounds a bit morbid and strange...retracing my steps.  But for me, I suppose it's important. I'm closing lots of loops and this is one of those.  I'm super excited.  And of course I'll get my annual bet in for the Vikings to win the super bowl this coming season.  I've made that bet every year since 1995.  I did a calculation not too long ago, that if I'd invested that annual $100 bet on amazon stock instead, I'd have nearly half a million dollars.  It'd be nice, but come on, I'm locked in to making the bet at this point.  The Vikings winning the  super bowl is also on my theoretical list.  They say don't fret about things you don't have control over and the Vikings winning might be of those things. But I say energy has to translate into some semblance of a positive effect.

And that's it. Really not much to report. Cruise control. The first time I met Dr Phan he said that's the goal.  And here we are.


  1. So happy for your "cruise control" Matt. Cruising... and Control... simple concepts to most, but huge to us! I lasted 18 months on Darza Pom Dex. Was happy with that for me. Super happy for your 2 1/2 years!!! I've been on Velcade Cytoxan Dex since late Sept 2018, and I'm feeling ok. Thrilled it's still working for me, but like you say... thinking about the "what's next" when this stops being effective.
    Funny, well not funny, how we were both anemic, deathly anemic at Dx, and I said I'd drink more cranberry juice (to make more red blood) LOL, and eat a steak, LOL. Ah, such denial of a serious Dx at that time. Love your revisiting L.V. I have so many "revisits"... but we'll see.
    Hope you have a wonderful trip Matt, and I look forward to reading your adventures. Glad all is good in Myelomaville for you :)) Julie

  2. What year was it that you and your friend rescued me in LV? Deserted by family. But I had a wonderful time with you. Hope you are enjoying the visit and so on.


Berenson Oncology Success Rate

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