A Year After Chemo … And What I Know

Today is the anniversary of my introduction to chemotherapy after I was diagnosed with lymphoma. One year ago today, I walked into Billings Clinic to begin a five month regime of chemo treatments. On that date I also posted the piece, A Pothole on the Road to My Perfect World.” 

I felt writing would be a good way to get my head around “having cancer.” I wanted to avoid a “woe is me” attitude though; rather how could I turn this into a source of motivation. Getting through it wasn’t even a question. I was going to. The issue was how could I make it through the other end even better … a new and improved version of me. I’ve always been a pragmatic optimist. I thought why should this experience, however adverse it was, be any different?

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But all that is just logistics. How my life agenda (personal and professional) is affected is really just resources allocation. This whole cancer thing is just another experience (a big one nonetheless). And our experiences shape who we are. I’m very curious to see what cerebral rabbit hole this one will take me down. I have no idea what synaptic connections will be forged – manifesting from the depths of places I have no idea even existed. I’m sure my perspective on things; past, present and future will be altered. At least I hope it will be. I’d hate to think I’m so emotionally detached that something like this won’t have an effect on me.

A Year Later … And What I Know

That was closing paragraph from that May 12, 2015 piece. I was all about resources and experiences and how I could mix them together to make some magic elixir that would transform me. Into what was the question I asked myself.

Well here we are and it’s a year later and this is what I know:

I know that according the numbers on blood panels, my cancer is in remission. During my initial diagnosis my white blood count was fifty times higher than normal. Critical is what they called it last May. Now it’s normal. So that’s a good thing. My condition is called chronic lymphomic leukemia. By definition, chronic means “persisting for a long time or constantly recurring.” So guess the cancer is always kind of there, just waiting to show itself, rearing its ugly head creating one of those fore-mentioned potholes down the road. I’ll deal with that if and when I need to. But in the meantime, that occupies no synaptic energy.

I know that health care facilities, at least the ones I had experience with are operationally leave a lot to be desired. It seemed too often there was a problem that really didn’t to happen. Without going into detail, let’s just say the experience just wasn’t what it should or could have been. Over the five months, my doctor changed three times and my navigator changed so many times I didn’t even have one at the end (through no doing of myself). But in the end I shouldn’t complain too much. The chemo drugs they gave me worked (even though I was allergic to one and multiple times went into rigors and broke out in hives).

I know that aside from the numbers on my blood panel, I really wasn’t much more to these people. The old cliché “just a number” is no exaggeration. I was my diagnosis. Seldom did anyone, a doctor a nurse or my cancer navigator ask me about what my life was all about and what effect this disease and the treatment program might have on it and those I was responsible for. I tried to get my navigator to read the post I wrote to get an idea of who I was and what I was going through – but she never got around to doing it. However I do like my current doctor. He’s young and energetic and seems to be on top of the new developments in the cancer world.

Maybe for Billings Montana I didn’t fit the profile of an average cancer patient spending the day in the infusion center. Most I saw had family members and care givers more my age. One time I asked a nurse about what cancer patients did about the side affects of their treatment on how it affected their daily lives and economic sustainability. Her answer was that no one ever asked that. “I guess they go on disability and collect insurance.” Really? Disability. How’s that work when you’re running a business and lending care to a pair of parents in their eighties on top of it? Maybe my perspective is skewed being a former headhunter where everyone is an interview waiting to happen and an opportunity to hear a life story.

I know what “chemo brain” is now; not that anyone told me about it or what to expect. Chemo brain is like having the proverbial wet blanket thrown on the campfire of your creative mind. For me … this is a big deal. All day long, every day, all I do is think. I’ve spent forty years exercising my mind to shun ideologies and cerebral shortcuts and instead think things through. With chemo brain my concentration was propelled into an abyss of fragmented synaptic entropy. Fortunately I’ve been able to reign in these effects. But still I have an excuse for the occasional memory lapse (even though it probably has nothing to do with it).

I know my body just doesn’t work quite the same. I don’t hear as well – hopefully it’s short-term. My sense of smell still hasn’t fully come back. It’s like I’m always smelling something burning. That’s not surprising since the active component in one of the chemotherapy drugs is acid. My daily routine of yoga and stretching has only now become daily again. My body and its recovery mechanism didn’t get the message that I wasn’t going to let cancer slow me down. They say when you die and they do an autopsy on you, the coroner can tell if you’ve had chemo. That wouldn’t surprise me. Doctors don’t tell you anything about these things either.

These things I learned didn’t really come as a surprise though. I hoped that they would be different and I could have used “mind over matter” Jedi ninja tricks to power through it. Not so much. But one thing I didn’t expect was the toll this last year would take on my patience. I’ve always been amped up – but now it’s different. The tolerance setting on my “bullshit meter” has been turned way down. Maybe its the confluence of my experience last year and our current insane presidential campaign that’s cranking me up. The endless procession of circus freaks masquerading as candidates and fact that they’re being taken seriously has turned into a daily battle for me to ignore. To believe any of these charlatans can have any positive effects on the United States or the world is inconceivable to me.

Looking back at the last paragraph of that piece from 2015, I come back to the question, “I’m very curious to see what cerebral rabbit hole this one will take me down.” What’s come of all this? What can I pull from this “lost year?” I as feared, “I’d hate to think I’m so emotionally detached that something like this won’t have an effect on me” – I’ve had trouble writing this. Months ago I made the decision to write a post on this day, the anniversary of my first treatment. So I had to come up with something … most of all a plan of action to use this experience to my benefit.

Turning Impatience Into Motivation

I can’t change the things I know and have learned. I can’t prevent a re-occurrence of my lymphoma; even though I can focus on my health. I can’t walk back the physical effects the chemotherapy has had (however minor in the whole scheme of things). And I can’t directly change the way America’s health care system works.

But the patience thing is a different story. I don’t need to let it be a negative. On the contrary – I’m going to use it. It’s time to be impatient. It’s time not to just talk and vote … but rather act. It’s time to make stuff happen. Just because the political circus is in town doesn’t mean we have to go to it, especially everyday. My impatience with this pathetic state of institutional competency (government and beyond) has only further stoked my motivational fire. The necessity of building community as our social safety net is even more apparent to me now.

It’s time to be impatient. It’s not time to wait. Sometimes you just have to create what you want to part of. 2015 was a lost year and nothing is going to change that. It’s made me a different person – more driven. I’m not going to just sit back and be a survivor. Having had cancer doesn’t define me or label me. Experiences, good and not so good, give you the tools to make your life what you want. It may not seem that way at the time, but is up you to determine what they’re going to be used for.

I don’t even know if I’m out of the “rabbit hole.” But regardless, I’m kind of getting used to that cat’s grin.

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I invite you to join me on my journey in rebuilding community by reading my series, On the Road to Your Community’s Perfect World.” This is my articulation of how we can create better, more inclusive, unique communities as the solution to our society’s pressing issues. Consider each week’s post a Mile Marker (MM), a cerebral off-ramp from the highway of your daily routine, taking a you little further down this road to a better version of society.

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You can also follow me on Twitter at @clayforsberg and on Google+.

Make 2016 the year you change your ‘Chief of Staff’

Well it’s now the beginning another year; this one being 2016. And with it comes a resurgence of optimism taking form in our annual resolutions. We all want to believe that this year will be the one when all the promises we make to ourselves to lose weight, save money, stop smoking, or whatever – will last longer than just the end of January. Who knows, maybe you will be one of the few where they do. Or maybe you’re one of those cynically realistic ones that believes the whole resolution thing is pointless. In the past I kind of fell somewhere in the middle. I still can’t let go of this optimism thing.

Being 2016 – it’s a presidential election year … if you call it that. I view it more a grotesque call-in reality show. But that’s just my opinion. Regardless, I’m not here to debate its legitimacy, but rather to have discussion on the logistics of politics, governing and specifically the role of the ‘gatekeeper’ otherwise known as the Chief of Staff.

According to Wikipedia, a ‘Chief of Staff’ provides a buffer between a chief executive and that executive’s direct-reporting team (amongst others). The chief of staff generally works behind the scenes to solve problems, mediate disputes, and deal with issues before they are brought to the chief executive. Often a Chief of Staff act as a confidante and advisor to the chief executive, acting as a sounding board for ideas.

Don’t we all have an internal Chief of Staff; the part of us that determines what we’re going think about, what we’re going do and how we prioritize?

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Metaphorically speaking, our minds are kind of like Gulliver of the famous English work of satire by Jonathan Swift . Every minute of every day we are pushed, pulled and tied down by our own Lilliputians. These mental intruders can be our family, our friends, our co-workers or even the media we see on the television or bloggers on the internet. But most of all … they are ourselves taking the form of our definition of societal norms and expectations. They are the parts of us that make us afraid of things we shouldn’t be afraid of.  They make us preoccupied with our To Do lists – lists that often are prioritized with tasks that are more habits than anything else. “We have to check our emails first everyday rather than write a letter, listen to music or just relax and clear our minds.”

These things that dictate our thoughts and actions are really no different from what the President deals with daily. He is bombarded by his staff, members of Congress and lobbyists … all with their own personal agendas and priorities. These priorities often have nothing to do with those of the President. If he (or she) had his way, they’d probably spend their time thinking – pondering the big picture … hopefully trying to make the world a better place (again my naive optimism showing).

It’s the job of the Chief of Staff to determine who occupies the President’s attention, and in turn his agenda and priorities. Imagine if there was no Chief of Staff though.  It would be endless barrage of “squeaky wheels” … with no WD40 anywhere in sight.

Whether we know it or not, we all have a Chief of Staff. Who this is and what effect they have on us is completely up to us. Do we push them to the side and just react the whims of our many influences and intrusions, both external or internal?  Or do we give them the power to cut the Lilliputians’ ropes mentally tying us down? How we delegate this authority, this gate-keeping – will determine how we live our life.

But how does your personal ‘Chief’ interact with these intrusions? Is your Chief of the “in your face” mode of Rahm Emanuel, or more of the “in the background” demeanor of Obama’s current Chief of Staff (who’s so much in the background, I don’t even remember who he is). You probably don’t want to be hostile to your kids for wanting a ride to the mall (that’s so ’80s); but conversely, you don’t want to be so passive to let every mundane intrusion run your life.

First you need to communicate with your Chief or Staff about your priorities. Make sure ‘gatekeeper’ knows the things that excite and energize you … the things that allow you to be who you want to be, not just tasks on a To Do list. Don’t let other’s representation of the world and what they think should be important dictate yours. Yes ‘media,’ I’m talking to you and all your scare-mongering terrorism hysteria. It’s hard to concentrate on ‘good’ things and on helping the world when you’re scared of anyone not like you because underneath you think they’re nothing but a terrorist or some other “trumped” threat promulgated by the media (for their own benefit).

Or is your Chief of Staff a holdover from past administrations such as your parents or even your grandparents. Societal expectations such as the white picket fence, the virtue of a college degree (and it’s mainline to financial and social success and stature) as well as the goal of a career with one company (retirement at 65 and then a life of golf and fishing) – are little more than distorted memories seen through rose-colored glasses of those generations past.

If you’re one of those who are still believes in resolutions – your resolutions can’t operate in a vacuum. It’s like addiction recovery. Just ‘stopping’ doesn’t work. A wholesale change needs to happen with the addict’s ecosystem. Going back to the same environment, with the same acquaintances (I hesitate to call them friends) and performing the same daily routine will lead nowhere but the road to relapse. First the addict has to not only change the priorities of their Chief of Staff, but give them the boot and start new. While your situation starting out 2016 may not be as drastic as this … your world may still require a changing of the guard to accomplish the goals you’ve set for the new year.

Who you select for your own internal Chief of Staff, and how they act, is up to you. Remember you are the President of Yourself … and your mind is your White House. And maybe it’s time to shake things up.

After all … it’s a new year.

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Come and join me on Twitter at @clayforsberg or on Google+.

Can we ever stop the march of the Neanderthals?

Update January 19, 2013: I wrote this post three years ago. And just, if not more appriopriate today than then. Naively so I thought that maybe by 2014 things might be different. Maybe in some respects they are. A new generation is gaining more of a foothold in the world (For the better I believe). But at the same time, the old guard of attitudes, those resident in the ‘ivory towers’ of materialism are digging in deeper … reminiscent of siege of the Civil War battle Vicksburg.

Yesterday (February 21, 2011) I commented on a provocative blog post by my friend Greg Rader, “The Future of Status – Conspicuous Production.”

Imagine if there was no money and no things to buy. How would you show the world your worth? How would you show yourself?

Would your value lie in the number of friends you have – physical or electronic? Would it lie in the quality and depth or your relationships with these friends (kind of an esoteric three-dimensional assessment)? Maybe it would lie in the number pieces of art you produced, or books and articles you’ve written.

Or better yet … what about the number of nebulous karma points you’ve accumulated by doing random acts of good? Haven’t we reached a point on Maslow’s ‘Hierarchy of Needs’ where we can at least flirt with self actualization?

Over your last couple posts, I think you’ve been us leading to this. It’s obvious, the standard societal measurement of wealth and worth just isn’t cutting it for you. I join you brother.

Maybe this is the first step – discontent. Only then we can find our own “store of value.” and from there truly maximize it’s worth. Maybe this is what I mean when I talk about “On the Road to Your Perfect World.” Thanks for pointing me the way.

I viewed the focus of Greg’s piece as: “Isn’t there a way of presenting our value to world other than just through the money we make and our consumption habits?” As you can tell from my comment above – it’s a topic that’s been on my mind also.

Recently, in light of the sky-high valuations of several dotcom 2.0 stocks, such as Facebook, Groupon and Twitter, this matter seems to be especially relevant. Recent investments have Facebook worth $52 billion and Twitter at $10 billion, while Groupon recently turned down a $6 billion offer from Google.

But I ask you … on what are the values based. In the first two it’s their ability to act as advertising platforms, and Groupon is worth what it can take as a cut of the pie. Isn’t there more though … more than just advertising, more than just a vehicle to accommodate more and more consumption. God I hope so.

Let’s put Groupon aside, they are what they are – a group buying coupon service … nothing more, nothing less. Eventually they will fall prey to another ‘new and improved’ version of the same.

But Facebook and Twitter are different. To label then as just advertising platforms is to vastly understate what they really are – what they’re really worth. One needs to look no further back than one month. Only thirty days ago the political environment in the Middle East was much the same as it’s been for the last thirty years. No longer. Tunisia is liberated. Egypt is liberated (well kinda). Libya will be in a matter a days, and whoever is next is anyone’s guess.

While Facebook and Twitter didn’t overthrow these dictatorships … they played an integral role. They facilitated strategic and tactical communication that was on the level of a sophisticated military sorte, only performed primarily by young civilians. These social networks provided something that wasn’t there before … coordination. The results to this point have been the liberation tens of billions of dollars and ten millions of people, people who now have the prospect of governing themselves and having a say in their future.

What’s that worth?

Have you evolved?

How can you put a monetary value on person’s freedom? How can you say in dollars and cents what it’s worth to know you have something to get up for in the morning, to know that just maybe your children might just have a better life than you … a life you could only dream of.

Why does everything have to be based on money and what we spend it on. Just because you drive a Mercedes 450SL and I drive a Ford Taurus – does that make you worth more than me. I could make a case on the contrary. We focus so much on our children making sure they go to college and get a job that pays a lot of money. How many us even discuss any other options – any other means of worth? This valuation system seems Neanderthal in the light of what’s happening in the world these days.

I have been there and done it. I’ve had the nice car, the apartment on the water, the original art on walls. But it sure wasn’t “the be all end all.” The car’s gone (well,not a Mercedes – didn’t have one of those), the apartment gone and my daughter has the art. The memories are good, but now it time to move on.

It’s like the pursuit of possessions had put me in a cloud. I had other pursuits, but the almighty dollar seemed to reign supreme. No longer.

My valuation lies not in my financial net worth, but rather in what Greg says, “my conspicuous production” and what results from it. Production can be anything. It could this blog post. It could be the comments that result from it. And as I said in my comment above, it could be in the karma points I accumulate by doing good things. So here it is, here is my new definition of “my value:”

My value is the sum total of all positive synaptic connections I have a role in creating, both in myself and in others. In other words, the more I can get people thinking in ways they wouldn’t otherwise think in – and correspondingly, act in ways that benefit themselves and others … the more I’m worth.

There you have it.

Now it’s time to pick up my hands … my knuckles are bloody.

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And if you like this … please Tweet it and follow me on Twitter @clayforsberg

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Related posts:

There is Hope …

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This photo was taken on September 3th, 2011 by my friend, L. Sean Key. It was a few months after the “once in a century” devastating flood in my hometown of Minot, North Dakota. You can see where the water marks death on the evergreens.

What Sean and I saw throughout our travels in Minot that weekend wasn’t death though … it was optimism. Whether you’re religious or not (which I’m not), this image says something. 
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Whatever the circumstances …
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There is hope!
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I can be found on Twitter at @clayforsberg and on Google+
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Related Posts:
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Overcast …

What do you see when you see clouds on the horizon?

Do you see gloom, and pessimism?

Or do you see what it will bring …

the rain that is responsible for all life?

I guess it’s just how you look at things.

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Overcast
Image by Brody

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I can be found on Twitter at @clayforsberg and Google+ on Clay Forsberg

What do you see?

Too many of us worry about others – what others think of us,

what they see when they look at us.

But before you worry what others see …

what do YOU see?

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What do you see
Image by Brody

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I can be found on Twitter at @clayforsberg and Google+ at Clay Forsberg

Sticks … and perception

What’s a pile of sticks?

To one it’s an eyesore. “Why don’t they just haul them away.”

To another, it’s heat … or maybe even a piece of art.

And maybe to the person who put them there – it could be cleansing, a moving ahead. It’s that yard work that finally got done.

Sticks, like anything … can be anything.

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Sticks
Image by Brody

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I can be found on Twitter at @clayforsberg and Google+ at Clay Forsberg