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Sunday, August 26, 2018

How Deep is the Lake




I thought about titling this post : When do I stop giving a fuck?  I just spent a few days in Lake Tahoe visiting my nephew and his wife, with a bonus: my nephew's father was there. We had an awesome time. Hiked. Ate. Gambled. Drank. Sat by the pool. Most important was the family/friend time. As I get deeper into my myeloma journey, I have fewer friends and am generally not too interested in hanging out with other people. I get pretty frustrated how people think I am fine and forget about the whole cancer thing. (e.g. too numerous to give just one) Yes, I live pretty normally and am doing really well, but not a day passes that myeloma doesn't somehow dive into my life. Throw it all into a blender and Matt time is pretty key nowadays. My Tahoe visit was a welcome break. And it was a glimpse into how I should be living with very few fucks to give.

I learned that no one has really explored the depths of the lake. At the surface, it is at 6,225 feet. It's depth is around 1,600 feet. Legend has it there are a lot of mob bodies at the bottom. I came across this article: What's swimming in Lake Tahoe's depths? Someone did explore the bottom a bit and came across a fish that had some shark characteristics. Well that would be frightening.

In my 30's and into my 40's I didn't pay a whole lot of attention to grown up stuff. I didn't think too much about retirement, health care, and all the stuff that goes hand in hand with getting older.  Sure people tried to talk to me about these things, but I didn't particularly listen.  I used to make two trips a year to Las Vegas. I wasn't a crazy gambler, but I did like to make things exciting. In fact, and as I've said before, I was in Las Vegas when I got the most sick a couple of weeks before being diagnosed. Walking through a casino the morning after a frightening fever and a bout of chills, I had a strong feeling that I was dying.  It was the first of what has become many intense gut feelings. I've been back to Vegas twice since being diagnosed. It's been a few years, but both times I wasn't yet feeling myself and I didn't totally enjoy the trips. This recent trip to Tahoe was nice because I do feel so good, and it was basically 3 days of not even thinking about myeloma.

I am quite aware that a large reason I do feel as good as I do is because I'm not working. I know I am quite fortunate to be in this position.  But it's a duel edge sword. There are times I feel so good that I think perhaps I could have worked a bit longer. And I know there are folks are struggling much more than I am and I should just suck it up and work (see Survivor's Guilt). Somewhat rationally I know that is somewhat ridiculous, that if I were working full time my quality of life would take a big dive and I'd be drained 24/7.  I have my pension and I'm on social security disability. Myeloma is on the list of automatically qualifying for disability.  With this I can earn $1,180 month without impacting disability.  I have a chance to do some part time consulting with my old job. On one hand it wouldn't take too much time and would be nice to have the extra income, but on the other hand I want as few responsibilities as possible, including not wanting to wear slacks and button down shirts. I busted my ass for seven years to keep working and to stay on top of my myeloma. It was exhausting, physically and emotionally.  I felt like I had to work extra hard so folks wouldn't think I was impacted by my disease. I might have done too good a job, because, frankly, there were times a few years back where I felt like our human resources was my enemy and preferred I be sicker and not showing up to work. Reasonable accommodations was not a concept that was bandied about.  It got better, but this was also a function of me feeling better.  So yeah, it's nice to be wanted and I do have some ownership of my old job, but I'm not 100% certain I want to go back even on a limited basis.  I do need to decide quickly. I'm meeting with my old boss this week, and he's awesome, but I need to have an answer for him.

On a bigger scale, this opportunity is really a test of how I want to live my next/last 1 or 5 or 20 years.  I want to not give a fuck about much.  I want to enjoy each day and basically do whatever the hell I want. I found out in Tahoe, I hold back a bit. I'm not as carefree as I was 20 years ago, but then, who is. This is a little maddening. Now, more so than any other time in my life, I should be living carefree.  Arghhhh! It's a challenging balancing act. Again, I understand that I'm super fortunate to be in the position where I can think like this. But if you throw in the remnants of my dream in March when I began to wonder if I am already dead and basically in a kind of purgatory, and I'm in a mental maze. I'm working on it. And don't get me wrong, I'm enjoying life and feel good, but I want to have some sort of road map.  It's like I know Lake Tahoe is deep but I'm not quite sure what's at the bottom.

Yesterday I hung out with Leslie and a couple of friends back here in Long Beach. It was awesome and gave me a chance to hear other perspectives on the meaning of life. Today I am going walking with a Kilimanjaro friend who lives near by. So there is a balance out there. As a Libra I'm all about balance (aka indecision?)


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Berenson Oncology Success Rate

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