Tuesday, December 3, 2013


Back to reality today. Hawaii, Maui more specifically, was awesome. Our friend Ray, who Uncle Jan and I have known for decades, was our host. In fact he was our sugar daddy for 6 days. Not only did we stay at his house (five of us). He took care of everything. He wouldn't let a single one of us pay for a damn thing. Hugely generous. Oh and he cooked for us every day, including Thanksgiving....with help from Jan's kids, Brigitte and Becky.

I/we are definitely gong back ASAP. For me, it was a bit of a life changing trip.  I swam every single day. Ocean and pool. Multiple times per day. Since my diagnosis and my recovery, I can't even describe what water means to me. It's massively powerful. It's massively freeing.  See, can't describe it. The ocean in Hawaii is amazing. Clean. Warm. I'd jump in at 7 AM and it was so damn nice. (note that on the news today I read that  a kayaker off Maui was killed by a shark yesterday) Gulp.

I never once thought about my cancer. Never came up. It was like it didn't exist. That alone is such a nice feeling.  The thing about myeloma, as we all know, is that treatment and maintenance and caution are basically never ending. We're never really free of the myeloma.  I imagine we all (I know I do) play mental games with ourselves to ignore myeloma as best as possible.  Nonetheless, it is always hanging in the background. But for 6 days, that wasn't the case. I was just Matt. Not Matt who has cancer. We smiled and laughed non stop. And that's partly the way to endure this. Laugh. Smile. Enjoy every day moment.

Today it was back to Berenson.  Thursday is chemo and Friday plus this weekend is the wrath of dex.  Berenson's office was packed. A full house. Old and young. Men and women. Cancer is equal opportunity. The visit with Berenson was easy. He said I'm doing great and no change to my regimen (with the exception of a shift in my vitamin d intake). So we talked Maui. How I didn't get a chance to learn to surf (nor snorkel).  Ran out of time. Dr B has surfed. Not a lot, but he has, most recently in Costa Rica.

Leaving the office, two things really hit me. One is that Dr B is a real person. He's not some crazy genius myeloma specialist sitting on a mountain top somewhere. He's real and does real things.And in thinking about all the patients in Dr B's office and all the fellow cancer patients I've met along the way, I was reminded that we all face shit. Life is tough. Life is a bitch. Life throws a lot of crap at us, and we have to deal with it. Some people would say it is god testing us.  But I just think it's life. whoooosh. It flies by. We endure tough times.  But the way to endure and deal with life's taunts, is to enjoy the ride. Yes we need to toughen up for life. But as I said, enjoy Laugh. Smile.  For 6 days, that is all I did and it was the best.  I try to do that back home. But you run into speed bumps. Work, home, people. All that can wipe the good humor away. And then things feel heavy. Very heavy.

For my 45th birthday, I spoke with a rabbi. A reconstructionist Jew.  We sat and talked for nearly 2 hours. I asked him about life from his viewpoint. He said, and I think about this all the time 7 years later, that our purpose in life is to find our purpose in life. In other words, we are always wondering, questioning, searching, learning. It's part of who we are and what keeps us going. So myeloma is just part of my experience. Going too Maui is also part of that experience. Minnesota in two weeks is also part of that. My fuck ups. My successes. My regrets. My proudest moments. These all are helping me get closer to my purpose. I'm not there yet.

I watched a special on HBO today called Sport in America. It was a series of short interviews with people discussing their most memorable sports memory. Regular people, Famous people. All discussing the impact of a certain significant event on so many people. The one defining moment. Most people's defining sports memory is something they watched as a kid. Mark Spitz. John Wooden. Tommy Smith and Jon Carlos. Memory making.  Olympics, Super Bowls, tennis tournaments.

Watching this show, I wondered what other people turn to in order to keep going. Focusing specifically on cancer patients, I have yet to meet someone with  a bad attitude. Every single person has been positive about their circumstances.  Yes, they get down and are scared, but they also stay hopeful.  When I visited Steven last year in the hospital, it was pretty clear that he wasn't going to make it. I saw him the day before he went home to pass away peacefully. His uncle was in the room. He told me that Steven still wanted to fight, that he he still had plans for the future.  But he also told me that Steven had almost accepted his fate. Soon thereafter Steven made the decision to go home. He was the first person at chemo that I met after my diagnosis. He calmed me down. He showed me his port where he did his infusion. He talked to the nurses about movies. Wow. I was expecting a depressing place and depressing people. But nope. All nice friendly people. When I was really sick, I'd go to chemo, wrap myself under a blanket, wrap myself in a ball and try to sleep for the 4 hours of treatment. While half asleep, I'd hear the other patients talking, joking or laughing at whatever movie was playing. And I didn't mind. It was comforting.

And this takes me back to the past several days. We talked, joked and laughed. A lot. And it felt so great. Today driving home from Berenson, I was still happy, still felt great. But I also felt a slight twang of tiredness. I hadn't felt that in a week. But life's weight in my one day back almost changed my energy level. But I talked to myself. I reminded myself of what is important. I took control.  Life is tough, but it's also awesome. So much to cherish, embrace and enjoy. I'm a happy Matt with cancer.

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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.