Tuesday, December 30, 2014

News, Notes and Other Almost New Years Eve Thoughts

Hello all, my name is Matt and I'm a myeloma patient.  It's been almost two weeks since my last post.  I recently wrote about the myeloma burnout I'm experiencing and it continues in full effect.  It's started to seep over in to other aspects of my life. Just feeling blah about stuff.  And make no mistake, the fact I feel blah, causes me further angst. I'm supposed to be celebrating and embracing life every single darn day. Instead, I'm a walking bundle of stress, guilt, regret and anxiety.  Tired of thinking about so many things.

Nonetheless, I continue to do well.  Maintenance is doing the trick. I feel good and I'm coming up on 44 months since my diagnosis.  Note that 44 is one of my favorite numbers, as I'll explain come January 2....the 44th month.

But the burnout has prevented me from even being able to update this blog.  Nonetheless, let me get you all updated:

  • Today wrapped up the latest cycle of maintenance...velcade, dex, revlimid and Medrol. This is the third cycle. After cycles one and two, my number improved significantly. This weekend I'll do the 24 hour urine collection to get the latest results. My monthly Berenson visit is January 9.
  • Yesterday I got my interim blood work results.  The key number is 3.39. That's my latest creatinine.  That is excellent. The second lowest number since I was diagnosed.  It means my kidneys are resting, recovering and the myeloma induced protein is lower and therefore not beating up the kidneys. Excellent news, seriously excellent.
  • In parallel with maintenance, I started taking Curcumin. If you google curcumin and myeloma, there is a fair amount of literature about the potential myeloma fighting benefits of curcumin.  Pat Killingsworth and the Myeloma Beacon have had posts about the topic. Coincidence or not, since I started taking Curcumin, my myeloma numbers have taken quite a dip and I've been feeling as good as I've felt in 3 and a half years.
  • I have been feeling quite strong and fit. As I wrote recently, my workouts lately have taken a turn in the positive direction. Cardio is great, I'm kicking ass.  Upper body strength is excellent, I finally figured out a work out routine that doesn't mess up my port, so that's nice.
  • Unfortunately two nights ago, I pulled a calf muscle that impacts my ability to work out. I've been limping around horribly for two days. What happened you ask. Almost embarrassing and definitely a reminder that I'm 53.  I was walking Gracie. We like to mix in an occasional sprint on our walks. She likes it. I like it. And the other night we took off on a sprint and I immediately felt a pop in my upper calf. My first thought was I tore my Achilles. That would suck big time.   I limped home. Iced it and watched it. No bruising, I was still able to move my ankle around, so my lack of formal medical education diagnosis was calf muscle pull. The Achilles was spared.  I showed it to Phan yesterday. He agreed that it wasn't an Achilles tear. But he did caution to watch it carefully, that if the pain persists, he'd want to do an ultrasound to ensure I didn't have a blood clot, which I am at an increased risk of having due to the various medications I take, revlimid being at the top of the blood clot producing potential list. As I write this, I can report that the calf is already starting to feel better. Leslie has me putting Arnica on it, which acts as a recovery speeder upper and anti bruising agent.  The lesson here: I'm old and shouldnt' be randomly starting a sprint as if I was a kid.  Caution Matt Goldman. Stretch Matt Goldman ( I reference my first blog post about stretching nearly 44 months ago).   The sore calf and the amazing amount of ear hair I have are stark reminders of the passing years. Also a lesson is that all things that for normal people aren't a big deal, require me to be extra vigilant and mindful about, because of the myeloma and the crazy amount of drugs I am on.
  • I continue to miss friends and family at an increasing rate. I plan to use the early part of 2015 to deal with this.
  • December 30 is the 10 year anniversary of my step dad Ed's passing. It's gone by fast. I've written before about how when I was initially diagnosed I had vivid dreams with Ed in them, where I was traveling somewhere and Ed kept putting up obstacles in my way, preventing me from getting where I thought I needed to get.  While I'm not the most spiritual person, I took these dreams as a literal effort from Ed telling me it wasn't time for me to die, that I still had living to do.  In death as in life, Ed has had quite an influence on me. He and my mom married when I was 10. 
  • Regular season football is over. The Vikings finished 7-9. They finished the season strong. I'm predicting playoffs for the Vikings in 2015. Teddy Bridgewater is the quarterback of the future. It's time for me to get a Teddy jersey. Do I get a home purple or away white? Hmmm..tough decision. I'm leaning white. I'm don't live in Minnesota, so I'm an away fan...hence white. But I might change my mind.  
  • My friend and mentor Brad is working to gain an upper hand on his myeloma. He had a rod placed in his leg today and he's gearing up for a stem cell transplant.  Google myeloma and Bradstrong to get to his blog. It's an honest, inspiring look at his journey with myeloma.
  • Pat Killingsworth, who relapsed early in 2014 and had been struggling to find a drug mix that worked is doing well and finally got a drug regimen that is beating down the myeloma.  I recently met Pat and Gary Peterson face to face. Both are amazing, funny, positive people who know so much more about the disease than I do.  I'm proud to call them friends. And that's a plus with this disease, the awesome people I have met and become friends with.
  • Gracie has become a brat dog lately. Every time she is left alone in the house, she is destroying stuff. Eating paper, books and cardboard boxes. She never used to do this. Perhaps she too has myeloma burnout and has some stress. While I love Gracie beyond what words can express, I sure wish she'd stop acting like a dog and go back to acting like a person.
And this is all I got. Happy new year to all. Know that you're all on my mind. Here's a picture of the curcumin that I take. It's over the counter and I take 6-8 a day.

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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.