Saturday, August 26, 2023

I Confess

I confess, I don't write very much anymore. So I'm using this post to spill all the beans, in no particular order. Take a break if you need it. 

First confession, I used to love zoos, marine mammal shows, horse racing and seeing the animals at fairs. Now, not so much, they can be pretty cruel to animals. Zoos, perhaps there is an argument to make that they do good. But, I won't go to one. And horse racing is terribly abusive. Just look at all the horse deaths at tracks around the country. If I was younger and had the energy, I'd have a farm for retired horses. Here's a petition to sign:

Second confession, in the 1970s and 1980s I had a strong back up team to the Vikings and that was the Houston Oilers. In fact, Earl Campbell of the Oilers is my favorite player ever, over any Vikings. I'm ashamed to admit it, but it's true. The Oilers moved to Tennessee some years ago and that was that. I now have no strong second favorite team. Well, for now it's the Buffalo Bills because they have Stefon Diggs, who made the Minneapolis Miracle catch. And Diggs is def in my top 5 list of favorite players ever. 

And we move on.

My back is a disaster. Turns out, even without bone issues and stable disease, my bones have been weakened by myeloma and steroids. I'm awaiting a surgery date. I won't go into all the details, but just know that it's limiting, a bummer and it's gonna be a long recovery. Several months.

In one of our conversations with a back doctor, as he explained how all the parts of the back work, I thought to myself that the body sure is complex and how did God do it. What a miraculous feat. And I'm a lifelong atheist. I'm spiritual, yes. I believe in ghosts, destiny and fate, but God, to me, is a whole other thing. What's more remarkable and miraculous? God doing all this or evolution? I still go with evolution, but I might have shifted from atheism towards being agnostic. And in terms of fate, I remind myself what Mr. Eko said in the show Lost: "Don't mistake coincidence for fate."

I'm Jewish. I grew up in a fairly Jewish neighborhood. But I never had a Bar Mitzvah. In fact, for most of my life, I've known little about the faith and traditions. I've encountered subtle and not so subtle antisemitism several times in my life. When I turned 44, I made a 45 x 45 list. 45 things to accomplish before my 45th birthday. Included on that list was talking to a rabbi about the meaning of life. A friend recommended a rabbi at a reconstructionist synagogue. And now, nearly 17 years later, I am finally truly investigating the traditions of Judaism as well as Reconstructionism. They don't necessarily believe in the typical supernatural God, but instead see God as the source of meaning, the power within that urges us toward generosity, responsibility, concern and self-fulfillment. In other words, God can be whatever gives us meaning. Well, right on! I can dig it. I'm embracing reconstructionism and have briefly pondered having an adult Bar Mitzvah. I'd finally be a man. See what getting old and living with an incurable cancer will do to you?

My Mom's friend, Mark Sfirri, made this wood bottle for me in celebration of the 45x45 and my 45th birthday. Check out his work. It's really great. As is my Mom's work....Merryll Saylan. Google her name and be blown away. 

One more related thing, recently I watched a show on Netflix about the Webb Telescope. Absolutely amazing. They're essentially looking back in time to when the universe first formed. That's wild. But what was there before the big bang? Nothing? What is nothing? 

As a kid, I loved the show Davey and Goliath. It was must see morning television for me. It was about a boy and his dog. I had no idea at the time that it was promoting the Christian faith. I know now. But I also know now, that the show supplemented my family in instilling good values within me and helping me know the difference between right and wrong. Nonetheless I and we all make mistakes. None of us is perfect. But as I painfully inch towards 13 years with myeloma and my 62nd birthday, I'm trying to have more rights than wrongs. And somehow, someway, I'd like to be able to fix my previous wrongs. It's not really possible. Unless....time travel was possible. Perhaps the Webb Telescope combined with worm holes offers hope.

My myeloma is stable. I've been on Darzalex for six and half years. That is pretty miraculous. I've been living with the disease for over 12 years. That's wild. I'm tired though. The drugs and the disease have take a physical and emotional toll on me. But I'm alive and kicking and still waiting on the Vikings to win their first super bowl. Did I mention both me and the Vikings were born in 1961?

Let's all remember to thank our caregivers. They sweat and stress and worry, probably more than us patients. They put their own lives on hold to care for us, especially when we're not feeling well, but even when we're doing well, they worry. I know Leslie does. The things she does for me are above and beyond. If she got tired of it and were to say she was done with it, I'd totally understand. But she doesn't. And the same goes for our families. I know I don't share everything with them. I'm guessing they know this and I'm guessing this adds to their stress. (Don't worry, the things I don't share are minor. The big stuff, like stable disease, I do share)

Also, remember to take care of your mental health. I for sure have been struggling with depression. I had foot surgery in 2010 and was diagnosed with myeloma in 2011. That's 13 years of medical crap. Nearly a quarter of my life. The changes to my life are profound and I wonder what I could or should have done different. Regretting that I didn't take advantage of good health and the freedom it affords. Fortunately, I found a good therapist. I just wish he'd do in person meetings. Virtual appointments are fine, I've adjusted to them, but still, you can't beat face to face.

You know what I really miss lately? Being in a casino, sitting at a video poker machine, drinking bud light all day and checking on my bets for whatever games might be happening. 

One more thing I miss is running. I used to love running. It was my jam. There is a trail race in Northern California called the Dipsea. It's a 7 mile trail run with an incredible ascent and descent. I ran it several times. I even did the Double Dipsea once. I planned to run the LA Marathon one time. I trained and trained and trained. Two weeks before the marathon, I did a 22 mile training run. It would be my last long run before the marathon. For that final training run, I went with a group of experienced marathoners. And they were fast. I tried my darnedest to keep up with them. And it killed me. It made me hate running. My own fault. Come marathon Sunday, it was a rare rainy day in LA and I opted not to run. And in fact I didn't run again, for nearly a year. And when I did run again, it was occasionally and always was at a slow pace. I later switched to cycling which allowed me to spend time with my brother.  I was watching a show the other night and something in it, made me remember how I loved running. The feeling of powering myself for miles and miles. It can't beat. And now with my back, myeloma and other aches, I doubt I'll ever be able to run again. That sucks. Like so many things, I should have appreciated it more at the time. And as is the case with Kilimanjaro, I prefer to not talk about it and do block out these examples of me quitting. I wonder and worry about what I will be able to do when I recover from my two level fusion surgery. Hopefully at a minimum, lots of walking and hiking will be ok. 

Control. I think a lot about how I feel like I have little control over my life. Working on it and regaining some semblance of control in my life. I also think a lot of what we call the new normal. It's challenging, the new normal can be isolating. Most people's lives evolve and they are on a path moving forward. Seems like we're in a worry, resolve the issue and worry more stage. And it's a long lasting, revolving stage. Getting my back fixed is key, it's so limiting currently. 

I've been watching a lot of the Track and Field World Championships this week. I'm a big track and field fan. I'm more of a fan than people realize. Take a looksee at this post-race interview with 400 meter hurdles silver medalist Shamier Little. Good words to remember for us cancer patients: Sleeping, eating, patience, rehab. recovery, talking to myself, affirmations, healthy, confident, good and gucci. 

If you're made it this far and are wondering, yes, I have made my annual bet on the Vikings to win the Super Bowl. I really think this is the year.  Season starts in two weeks.

And that's all I got. Hope everyone is doing well and are happy. 


  1. I think you should write more - for us and for you. xo

  2. I agree. Writing seems therapeutic for you. Also, I'm a big fan of Earl Campbell, as well. We were living in Austin when he played at Texas. And a fan of Stefon Diggs, a former Terp! Sorry about your back, that sucks. I'm still doing good on Darzalex, too. It's been 3 years for me. Hopefully I get as many as you before changing treatment. Fingers crossed!

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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.