Thursday, February 13, 2014

My Almost 15 Minutes

First let's get business out of the way.  Today is Thursday, February 13.  Mid February already! We all say it, but time sure does fly by.  I have chemo today. Day 15 of cycle 22 of maintenance chemo.  Infusion of velcade and dex. Then at home I take revlimid and medrol.  This weekend is my 24 hour urine collection.  Next week is Berenson and the kidney doctor.  I did basic blood work earlier in the week and for the first time I didn't call for my results. I'll get them when I go to Phan's today for my infusion. 

We've been taking a cancer survivorship class. There are reading assignments and homework assignments every week.  There are perhaps a half dozen other participants in the class. I'm the only myeloma patient.  Really it's a group session of cognitive therapy, a term I didn't know until recently. It helps us balance the unknown and worry that comes with cancer. We do a lot of belief work, which means we're working to eliminate unhealthy thoughts and beliefs as they pertain to our cancer. I'm really enjoying the class and it is helping me cope.

This weekend, the L.A. Chapter of the LLS is having a one day blood cancer conference.  My mom is coming down for a visit and the three of us will be going to the conference to learn a few things.

Now on to other stuff.  As most of you likely know, Tom Brokaw announced he has multiple myeloma. Apparently he was diagnosed last August, but his announcement came a few months later. As with anyone who has been diagnosed with myeloma or any form of cancer, it's a shame and we all send best wishes and positive thoughts to Mr. Brokaw.  But this is also an opportunity to raise awareness about multiple myeloma, a not so common cancer.

Yesterday when I went to work, I had an email from someone at the tv show Inside Edition.  They found me from this blog and from I believe fellow patient Gary Peterson (who tracks survival rates at  The show was doing a segment on Tom Brokaw and wanted to add something from a patient's perspective. I called up the individual and made arrangement to go to their office to tape my segment. I left work, went home to change my shirt and pick up Leslie. I made it to their facility at 10 AM.  We met a few folks and were taken to a room with a couple of chairs, a camera and a staged library behind the chair I'd be sitting in. I answered questions for about 15 minutes. I discussed myeloma, what it is and they asked what Tom Brokaw might be facing. I think I did pretty well.  They also filmed me outside walking and leaning, pensively against a railing.

I rushed back to work, and told folks to set their dvrs for that day's Inside Edition.  Leslie meanwhile called my family to let them know. As always, I got a ton of encouragement for my fellow myeloma survivors. Seemed like a great opportunity to inform folks about this incurable cancer.  At 3:30 yesterday, a few of us went to someone's office who had a tv.  The show opened with several minutes on a 911 call related to road rage and then several minutes of how to properly rake snow off your roof. WTF????  Then it was the Tom Brokaw story. This lasted maybe 45 seconds. It had a quick video of Dr Berenson. And then it was over. No Matt. No me.  What happened? I was on the cutting room floor. Talk about bursting my bubble.

The night before at our cancer class we discussed the benefits of getting sick. I mentioned that getting cancer had gotten me over my horrible fear of public speaking. Even speaking in small intimate group settings made me super anxious and sweaty. But no more. I'll now talk anywhere, any time. Before cancer I never would have sat in front of a camera and answered questions.

So this opportunity at Inside Edition served two purposes. Mostly it was to raise myeloma awareness. This is key. But it was also a bit of an ego boost. Life it pretty routine. Wake up, go to work, come home, fight cancer. So this opportunity definitely mixed things up. Well, I was close. I almost had my 15 minutes of fame.

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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.