Archive for the ‘Experiences’ Category

I’m thinking of writing a book.

I thought I made up a word called “Dataganger” but I Googled it only to find that others have beat me to it. The great news is that I could instantly “Google” it. The bad news is that there is now another bit of data to define my “Dataganger”! I still want to use the word if I ever write the book. Here’s why:

  • Several medical image libraries have gigabytes of image data of my brain.
  • My Alexa insures that Amazon knows when I go to sleep, when I awake, which podcasts I listen to, that I listen to the BBC World Service when I go to bed, when I go upstairs and downstairs, what music I like, what my political views are, and a million more things about me that “she” probably records when I’m not looking.
  • Twitter knows all my political views and all my likes and dislikes.
  • Facebook knows pretty much everything
  • Google knows everything I’ve ever researched about my health, sporting teams, technical interests, and almost everything I’ve ever cared about.
  • Amazon knows all the books I like, what coffee I drink, what toilet paper I buy, what Indian food I like, what watches I wear, what pet food I buy, and, by the way, every product I’ve ever bought at Whole Foods.
  • My Nest thermostat knows what temperature I like any time of the day or night and when I am and am not home.
  • My T-Mobile SyncUp Drive knows every place I drive either of my cars, how fast I drive, how many times I brake too hard, how much time I’m on the road, and how I maintain my cars.
  • My iPhone knows where I am anytime of the day or night, how much I walk, what apps I use, what I like and dislike, and thousands of other bits of telemetry relative to what I am and do.
  • LinkedIn knows everything about my career history, aspirations, and business relationships.
  • My Fitbit knows how much I walk.
  • My watch knows how much I walk and everyone who texts or calls me.
  • My parking lot key card reader knows when I come and go from work.
  • The Harvest app knows everything I tell my company about my work hours.
  • The fingerprint reader on my office door knows whenever I enter or leave the office.
  • My Ring Video Doorbell know who comes to by front door, when, and possibly even why.
  • Comcast Xfinity knows everything thing I watch on every TV in my house.
  • Zillow knows where I live, who my neighbors are, what my house is worth, and the demographics of my neighborhood.
  • My Roku knows anything about my viewing habits that Xfinity doesn’t know, and, since it’s on my Comcast ISP, Comcast has that data too.
  • Ancestry.com has my entire genome.
  • And let’s not even start on Credit Karma!

But wait! There’s more!  The sad fact is that every one of those services has probably sold my data to many others so that they can target me with ads.

So, what’s my point – aside from the fact that I’m over-connected? There are two.

First, In every single case I have done this to myself. I have chosen to exchange my data for one form of convenience or another. I did this by either reading and agreeing to terms and conditions that I have no possible leverage to negotiate, or by not even reading those Ts&Cs. After all, what am I supposed to do, not have a smartphone just because T-Mobile and AT&T won’t negotiate? I knowingly make what could be a really stupid decision every day.

My second, and perhaps more important point is that there is now a distributed data copy of Steve Bilow, floating around Cyberspace. It may be distributed but it’s still privately owned. This is my digital doppelganger and the only one who seems not to own it is ME.

That is what I call my “Dataganger” and I have a lot more to say about it in my next few posts.

There may be a book in my future. Who knows?

(Well, actually, Amazon, Google, Twitter, Facebook, Nest, T-Mobile, Apple, Fitbit, the parking lot and building owners at my place of business, Harvest, Comcast, Zillow, Roku, Ancestry, Credit Karma, and only God knows who else probably have enough data about be to make a pretty accurate inference. So, SOMEBODY probably does know.  Just not me. I own one me… large corporations own the other, the federated, me. That’s the bad news…………..)

 

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It’s been well over a year since I last wrote on this subject. Meanwhile my old Radiation Oncologist dumped me and moved to California – Not before sending my new doctor pictures of the nice relaxing trip she had to Hawaii after dumping her old cases, like me, on the poor man!

That’s okay though because my new doctor is a very cool guy named Jerry Jaboin. Dr. Jaboin tells me that not many people study Trigeminals Schwannomas because people think they are boring. Well! To this I say:

“HA! FORGET IT! There ain’t nothin’ about me that’s boring! Not even my fuckin’ intercranial lesion!!! Who you callin’ boring!”

(By the way, great news, this tumor is pushing on my brain tissue so Dr. Jaboin says I can blame that inappropriate burst of profanity on the tumor! See Patt… Told ya. 🙂 🙂 🙂 )

So… seriously… With a few more thousands of dollars of MRIs under my belt here’s what I know:

Nothing.

Well okay…. something. I know that nothing has changed. Not even a little bit. The size of the tumor is identical to what it was 18 months ago. To be clear, that’s not bad. It’s good that it’s not growing and it might even mean that my stereotactic radiosurgery worked a little.

I also learned today that stereotactic radiosurgery actually can be done more than once. It just won’t do any good for me. <sigh>

And, I learned this:

There is stable compression of the left trigeminal ganglion, which is displaced laterally and inferiorly against petrous bone. 

To this I would say “Duh!” if I knew what those words meant 😉 To my credit I can say that I don’t actually think “inferiorly” is a word at all.

And… get this: my  “Intracranial flow-voids are patent.” At first I thought that said “patient” but I know for sure that there is no patience in my brain…. so… that’s not possible.

I was going to show you all my most recent MRI but the images won’t open on this PC. I think it’s intercranial flow-voids are impatient or impotent  or whatever and I need to reboot.

So… look…. the bottom line is that I have no new problems, an awesome new doctor, a new scapegoat for my bad language, and no reason to have another MRI for 12 – 18 months.  Honestly…. that is a good thing.

By the way, Dr. Peggy Mason, Dr. Jaboin think’s he’s met you before. I told him it’s unlikely because you are way too hip to hang out with these BORING schwannomas.

Love you all.

 


 

This just in…. I lied….. Here’s a few views of my little friend….

UntitledApril 2019 MRI

 

 

 

 

 

I’d like to start by apologizing to those of you who are actually engaged followers of my writing. My last post was over 3 months ago and even that was just a reblog. I have found myself in a situation of looking for a new “real job” and everyone I know tells me to be careful of what I write. All of them are correct. After all it’s difficult to undo a first impression and everyone who sees my resume will see my social media. I do need to be cognizant of that. So to my followers, I’m sorry I’ve given you so little.

In theory, since I’m sending around lots of resumes, I also need to begin by welcoming those of you who are here because you want to know if you should interview me. Trust me, you should 🙂 When you look at these posts please don’t focus on the one or two you disagree with or find strange. Rather, consider how refreshing it might be to work with someone who thinks and who has such absolute integrity as to be 110% transparent. You won’t like all you read but you will hopefully find it thought-provoking. That’s what my next employer will get: unconditional integrity, transparency, and intellect. That is who I am. Ok… And I try like heck to be funny too since that is my stress coping mechanism.

Which brings me to the point of this post…

Every firm has resources. Every resource has a cost. Every cost goes on the expense side of a balance sheet. Every balance sheet needs to ultimately represent a profitable, fiscally viable, business. My iPad is a resource. My Mont Blanc pen is a resource. My glass kiln is resource. My house is a resource. My wife and I are resources. But only the last resources I mentioned can have unconditional integrity, humor, love, emotion, empathy, fear, creativity, strategic agility, and compassion. So, in the next few weeks I want to address my contention that humans can’t simply be treated as financial resources. My personal moral-compass points to human value and dignity at exactly true north.

I have been involved with several firms that are in transition. All of them seem to have expense issues at one time or another. Reducing travel expenses so that we “don’t need to make ‘other’ resource reductions”, for example, is a very poorly disguised code for pending layoffs. That was not my particular situation but I’ve been on both sides of the equation and I get it. That said, I propose (and this is where I always thought my PhD dissertation in business ethics – maybe in my next life – should end up) that $1m in travel and $1m in human capital are not equivalent. You can’t ruin a non-human life but you can destroy a family in an instant when you treat human and non-human resources identically. Over the course of this series of posts I will explain why both business ethics and virtue ethics in a business context should be founded on treating humans as inherently higher value than their comparably costed non-human resources.

So… Stay tuned.

Consider this:

Suppose there were 5 people, all the same age and in the same state of health, who were diagnosed with the same terminal illness that had progressed to the same degree. All were expected to die.

Person 1 has a church full of devout Christians praying for them.

Person 2 has a their Synagogue praying the Mi Sheberach healing prayer for them every day.

Person 3 has everyone in their Mosque praying for them.

Person 4 has every Shinto priest in Japan praying that the ancestors heal them.

Person 5 has there most devoted atheist friends visiting and comforting them each day and hoping for healing.

Would there be a difference in the outcome of the illness for each of these 5 people?

I know what I think and it may not be what you expect. But, I’m not going to tell you until you tell me what you think. If you are willing to play then comment on this post and answer this;

1. Would there be a difference in the outcome of the illness for each person?

2. Why?

3. If you answered question 2 by saying that God, Spirit, the universe, the ancestors, whatever, intervenes in what happens then do the people with the illness deserve what happens to them and why would that “higher power” choose to help some but not others?

I’ll tell you what I think in another post. Right now I want to give you a voice.

I had another MRI this past week. I saw the radiation oncologist two days later. The good news is that this time I am not bummed. I’m just ambivalent.

My tumor looks absolutely identical to how it did on the MRI three months ago. I could be disappointed that it still has not reduced in size. But I’m not. Rather, I am happy that it has not grown.

It has now been almost 2 years since I had the radiation treatment. Lots of great doctors did their best to treat it. Lots of great friends and family did their best to pray that it would shrink. It has been treated expertly and, after 2 years, it is likely not going to shrink.

I’ve had some funny, really stupid, thoughts of late. One day I actually said to myself: “Maybe I got a brain tumor because my body wasn’t really prepared for all that extra spinal energy when I got initiated into Kriya Yoga.” Now THAT is a stupid thought. If Paramahansa Yogananda comes to meet me in the afterlife the first thing he’ll do before introducing me to Babaji is to whack me upside my head! 🙂 Silly shit. I’m very sure the next thing he’ll do is tell me I should have done more Kriya’s not less. Duh.

Ok I’m being silly now. But, here’s the bottom line. You don’t always get what you ask for. You can’t change some things. So, I’m working on that phase of acceptance. I’m working to remember that I have a choice in how I react. It’s a blessing that my tumor is benign. It’s a blessing that my tumor is not growing. It’s s blessing that I live in a city with a world-class research institution. It’s a blessing that I have Patt to support me. It’s a blessing that I have a numb eyeball instead of, say, numb… well, never mind. It’s a blessing that this is an annoyance not a life-threatening ailment. There are lots of blessings to be found here.

My challenge – which I’m working hard to accept – is to CHOOSE to be grateful for the blessings rather than dwell on all the things that I want to be different. I’m trying to move into a space of gratitude.

I wonder if it will go away if I just do more Kriyas? 🙂

All of you know that I’ve kept a really solid sense of humor since I was first diagnosed with a (benign) Trigeminal Schwannoma. I would not have had 6 previous posts with a title this lame if I didn’t. But I have to tell you that I’m not in the joking mood today.

After hitting this little fucker with a big dose of radiation a year and a half ago I expected this annual MRI to show an unchanged to slightly smaller tumor. That is not the case.

It no longer takes more than 2 seconds for me to show you the tumor on an MRI image.Here it is, looking up from the bottom of my skull:

Tumor MRI 1 Aug 17 Zoom

I’m not a radiologist but I certainly know by now that rule number one or two is to look for asymmetry. Not hard to find when you scroll through the studies. I’m good at that after almost 2 years.

You can’t tell much about the size but, if you look back a year, you can see that it looks about as it did before. If it were as before I would be a happy camper. Unfortunately it is slightly larger and I’m more than slightly disappointed. What I love about my doctor is that she doesn’t try to spin things. When I told her I was bummed she said “yeah, I’m disappointed too”. We were both surprised.

Schwann cells are not very radio-sensitive so this kind of tumor does not generally shrink. But it also does not typically grow. We can’t really tell if the tumor has grown or if this is still just post-radiation inflammation. The latter can actually go on for 2 or 3 years. That is rare but then I’m a special kinda guy.  Whatever it is, it’s slightly larger than it was a year ago.

Regardless, since I’ve been transparent about this all along, I just want y’all to know that this is a bummer and I’m having trouble today in keeping my humor up and running.

I’ve often been asked if they can do surgery and just remove it. The answer is that anything is possible but not everything is worth the risk.

First, if they did try to remove it they would almost certainly further damage the nerve. I’d still choose a numb eyeball over a numb face so there’s that.

Second, let me show you a picture I haven’t shared before. Here is an MR Image from the back of my head.

Tumor MRI 2 Aug 17

You can see the tumor on the right side of the image, Down below – all that shit that does not look like brain – that’s the base of my skull. The tumor is sitting in a little part of that area called “Meckel’s Cave”. Among other things that’s a bitch to get to. It’s also right where my carotid artery enters. It would sort of suck to accidentally cut through that.

Now… the easy thing to do is to use a Guillotine. The problem is that reassembly is tough (I told you my sense of humor about this sucks – that’s the best fucking joke I can come up with. Sorry.)

Interestingly, even among Neurosurgeons there are lots of sub-specialties. Apparently there are guys called “Skull base specialists” who have… like….. REALLY steady hands. They know how to operate down there. But that sounds about a million times scarier than having a room full of nice people shooting a linear accelerator at you for a few minutes. So, I’d vote “no” without a hell of a reason.

The good news is that Dr. Kubicky also votes “no”. She says that it’s difficult to believe that, with the dose of radiation I had, the tumor has really grown. She still thinks this is inflammation and wants to just keep watching it unless the symptoms change. For the first 2 years watching it was sort of fun. Now, now so much.

So, to summarize my rambling update: Next MRI is in 3 months. Until then, nothing much to do. I’m sure I’ll get over the bit of melancholia. In the meantime the only consolation is that I again have something to worry about other than politics.

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