Tuesday, March 24, 2015

Cruising through another cycle

Wrapped up another cycle of maintenance today.  That means insomnia, crazy energy, followed by a crash. That's my next 3 or 4 days.  Later this week I'll do my monthly 24 urine collection. Results middle of next week, followed by a Berenson visit.  My blood counts are hanging in there. No procrit this week.

Last month, after Berenson's visit, I saw a new kidney doctor. I hadn't been in nearly 10 months to any kidney doctor. Probably too long...but also a sign that my kidneys keep on hanging in there. Because it was a new doctor, he wanted me to get a kidney ultrasound, so he can see how they look., i.e. blockage, etc.  Last week I had the ultrasound. I tried to get a picture of my kidneys on the machine, but the nurse told me that isn't allowed. She said it's now the law and even expecting parents can't a copy of their ultrasound. The funny thing is she blamed it on Tom Cruise. She said that when he was married to Katie Holmes and she was pregnant, he bought his own ultrasound machine. And to protect the output, he lobbied the state to change the law about the sharing of images from ultrasound. "look it up" she told me. I haven't yet, but perhaps tonight while I'm not sleeping, I will look it up. Sounds a bit doubtful to me, but you never know. Anyhow, the result is that I couldn't get a photo of my own kidneys.  Dr Phan today told me that he saw them and everything looks good, nothing to worry about.

Also right now, we have March Madness going on.  92 people are playing in Blood Cancer Madness Pool and have done brackets.  The beauty is that half the funds go to the Leukemia and Lymphoma Society.  Next year, I'd like to get 200. This weekend I did an MMRF 5k in San Francisco. My mom was going to walk with me, but wasn't feeling 100% , so I went alone. On the walk I met a woman who lost her husband to myeloma in 2011.  We walked and talked, she was very nice. She was telling me how much the LLS did for her and her husband in terms of paying for travel and expenses when they needed to travel to see other myeloma specialists.  This weekend was also the Big Climb in Seattle. Obviously I didn't do it this year, but I have done it in the past and it also supports the LLS.  There are so many great organizations out there. Fund raising is tough. I try to do one event a year, but years come around quickly and I start to feel like I'm bugging people. That's what nice about using March Madness as the fund raiser. People love doing brackets, they can win money and money goes to the LLS. Win, win, win.

Just finished up a Caesar salad and matzo ball soup. A post chemo tradition. Soon I'll doze off for a couple of hours, then I'm awake for the next 24 hours or so.

What else? We're going to Albuquerque next month. Yes!! For you Breaking Bad great is Better Call Saul?  Very great.  Watched The Interview while doing chemo today. Super funny. I was LOLing right there in the infusion room.  Friday is UCLA vs Gonzaga in the sweet sixteen. Go Bruins!!

And don't  get me started on the Adrian Peterson situation. Argh.

Not sure if folks follow my friends Brad Coustan and Pat Killingsworth. Both are facing challenging times with their myeloma. Both are persevering and are taking the disease head on.  Another friend, Dan is doing hospice, having run out of options.  I've exchanged a few emails with him over the past couple of months. The way in which he and Tib, his partner, are handling this is truly beautiful.  Sometimes it just feels like words when I try to express how I feel about these friends. But believe when I say, I'm moved by them and am lucky to know all of them.

And that's about it.  I'm feeling good. Numbers holding steady. Everything is fairly routine.

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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.