Staying Strong

Monday morning I got up early and prepared myself for I thought would be my last three-day session of chemo treatments for my lymphoma (Using the word “my” in reference to having cancer seemed odd writing it, but I suppose if I take ownership over it – it won’t own me) . Unfortunately I got bumped. My platelet count was too low and my ordeal is now pushed to next week. In the whole scheme of things this is no big deal – but it’s just another one those straws putting pressure on the proverbial camel’s back. It’s not just the all day infusion sessions: It’s the preparation, mentally and physically that’s a big part of it. Now I’ll have do it all again at the end of this week. Hopefully my blood levels are up so I can get on with this.

Later after I got back home, I checked my email and came across an article in my Fast Company feed, “Why Telling John McCain to Beat Cancer Feeds Into a Dangerous GOP Narrative.” All things considered, this piece peaked my interest.

Now for those living under or in a rock and oblivious to current happenings in the world, John McCain was diagnosed with a fast-metastasizing cancer of the brain, Glioblastoma to be specific. The outpouring of support was no surprise. And the tone of the support was really no surprise either considering who John McCain is and his personal history. No one is feeling sorry for him. Just the opposite. People are assuming he will fight this with the same tenacity he did as a POW in Vietnam.

Jean Hannah Edelstein, the author of the Fast Company piece had an odd take on the situation. In this brief, maybe 500 word article, she didn’t really talk about John McCain or cancer that much. Instead Edelstein chose to attack the Republican party and their healthcare policies. She also threw Barak Obama under the bus for good measure.

Now I want to pile on the toxic dumpster fire that is the Republican party as much as anyone. But I don’t really see why John McCain’s cancer is the place and time to do it. This isn’t a partisan issue. Access to treatment maybe – but reaction to it … not at all.  To make it that – is to further feed the fire that has created the toxic political and civic environment we all now inhabit. If anything, McCain, who for the most part is not a polarizing figure, may be one of the rare politicians who could generate a common sense of compassion and human decency. That being said, his vote repeal Obamacare yesterday did little to endear him or his situation to me. One would think he would have acquired a new sense of empathy for those less fortunate financially in situations similar to him. But apparently not.

Regardless, that doesn’t change Edelstein’s reaction to the outpouring of support for McCain – which occurred before the vote. She used the situation as yet another opportunity to further the political divide. Rather than encourage people diagnosed with cancer to fight the disease and build their self-efficacy, she thinks we should show them sympathy. To encourage them to fight the disease implies if they give way to it, they didn’t fight hard enough and the outcome is their fault. I suppose I get where she’s coming from. I’m not against a show of sympathy. While not my preferred reaction – it works for some people. But I have real hard time with the view that one’s own efforts have nothing to do with the outcome when it entails a disease. When does self-responsibility and personal power affecting change come into play in Edelstein’s mind? Does it ever … for anything? Or are we just innocent victims of a predetermined fate – possibly only affected by the efforts of someone in a white lab coat and a fifteen minute visit.

For example she picked a bone with Paul Ryan, who I’m no fan of, and his views of self-responsibility.

Paul Ryan spearheaded the concept of personal responsibility in the context of health care in 2009, when he wrote in his Patient’s Choice Act that a “large percentage of heart disease, stroke, and type 2 diabetes, as well as many cancers, could be prevented if Americans would stop smoking, start eating better, and start exercising.” Health policy should be built, he argued then (and now) to reward people who look after their health—to disincentivize illness, as if people are eager to pursue bad health.

While Ryan’s Ayn Rand extremism is exactly that, extreme … there are things we can take from it. Should we embrace Ryan’s view of “pulling ones self up by the bootstraps” wholeheartedly – probably not. But should we buy into Edelstein’s succumb to destiny and fate – probably not either.

Her views are affected by the death of her father, a non-smoker, of lung-cancer at age 69 (as the article outlines). For good reason, it’s obvious this has had a major impact on her life, specifically her views on healthcare. Her bio even says she’s writing a book on cancer and genetics. In addition, she’s a writer for the Guardian – which has become a go-to anti-GOP media outlet (no judgement intended, but it’s impossible to ignore its left-leaning direction).

Disclaimer: I used to read the Guardian, but can’t anymore. In my opinion, their political views have infested virtually everything they publish – whether the content should be taken as political or not. I suppose they believe they are doing a service. That may be – but they can do it without me. I believe Edelstein’s article in Fast Company follows along with this philosophy.

She takes the opportunity to rally us for a “healthcare for all” policy of government. While a noble cause (and philosophically I agree with – and I have enormous skin in the game) – its implementation is a completely different story. I’ll leave discussions of a single-payer government-run system for a different day and different couple thousand words. Let me just leave it with anyone who has had experience with American Veterans Choice program wouldn’t wish that experience on anyone, friend or foe.

To assume that we turn over everything to the government and expect them to sprinkle fairy dust on every problem we have and make it better, is naive at best and most realistically – pragmatically irresponsible. The government isn’t going to fix healthcare or much anything else – regardless of what party and color clown suit they’re wearing. The governmental apparatus is mired in operational malaise and void of innovative talent. Unfortunately, what our founding fathers created is no match for the complexity of today’s world and the narcissistic political behavior that has manifested in Washington D.C. under the guise of representative democracy.

My journey with cancer over the last two and half years has heightened my obsession with self-efficacy. I have no other option. I have to believe what I do and what I think makes a difference. I’ve never been one to believe in fate – and I sure as hell I’m not going to start now. My way of dealing with this is believing that self-efficacy is my partner in this battle. The stronger it is … the stronger I’ll be and better my prognosis. I’ve even created an engagement bot to help me in my journey – and named it MelvinOf course I have my medical treatments which I anticipate will work, but I don’t have any control over that. What I do have control over the is my attitude during this journey (both during treatment and afterwards) – to help ensure I don’t have to go through this for a third time (or more).

I can be positive and take care of myself; and most of all try to lend support to others by being part of the solution to issues in their lives. I believe looking outwards is a big part of internal healing. We are a function of so much more than just ourselves. We are products and parts (today and in the future) of those around us – in our communities. I’ve taken this stance and made it a cornerstone of my Community 3.0 project, right there next to Rhizomes and Front Porches

That is what I can do … and will continue to do going forward.

My very good friend Bob always tells me to stay strong. It shows he cares. But more than that, it shows he thinks enough of me to believe that my strength and self-efficacy will in some way lead me to a positive outcome. This makes me try harder. And that’s a good thing. How Jean Hannah Edelstein can justify taking that away from me is malignant in itself. I go through my own battle, and yes Jean that is what it is (and I wouldn’t doubt your father considered it the same), with the same passion and drive I’ve put forth towards anything else I’ve done in my life. Only in this case, the stakes are higher. Whoever wants to jump on board and give Melvin, my self-efficacy, a little push … I’m all in.

Battling cancer is so much more than just the end-game. It’s the journey. It’s the side-affects and the treatment. It’s the physical turmoil. And it’s emotional rollercoaster. It’s Chemo Brain and the struggle keeping concentration. And it’s not enough to take care of and worry about myself – it’s the affect my situation is having on those around me? And if I succumb to it, what effect will that have on those closest to me? Will they never be able to let it go – always looking for an answer, dedicating their lives or worse obsessing over of it until it consumes them too? Or will they turn it around and pull strength from it – much like a vicarious spirit of the Phoenix. Personally I want to lead by example, and as Bob says … Stay Strong!

May this post be a message to those close to me, and those close to others with cancer who are battling, often in ways you have no idea of. We don’t need sympathy. We don’t want you to feel sorry for us. We want to know our battle will transcend us as you take the baton our of strength and self-efficacy and carry it forward to use in your own lives – adding to your own personal emotional and mental toolboxes. Make our battle worth more than just the efforts of us alone. Use it fight to fight your own battles too.

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

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A Saturday in May…

A few years ago, when visiting my daughter in Los Angeles, I was on a walk through West L.A. when I ran across a homeless man collecting cans and bottles from a dumpster. I stopped and we talked for about for fifteen minutes.

We talked about a lot things; the weather, the BP oil spill and eventually the economy. His take on the economy was that he thought things were getting worse, rather than better – as what we’d been hearing from the news media. “How did you come up with that?”  I asked him.

“Well I see more cheap brand cans in the garbage than I used to. Even last year when things were supposedly worse, people still drank Coke and Budweiser. But now it’s changed.”  It’s Shasta and Natural Light.

His astute observation was definitely not a perspective I would have gotten through my normal channels. But it made sense – and for this locale it was probably more accurate than any economics professor would have come up with a few blocks down the street at UCLA. But that was only the start of what turned out to be a very memorable day.

After meeting the astute homeless man I mentioned above I caught a bus to Skid Row to meet up with a woman I knew only as Special K. Special K was a photographer and homeless activist I was introduced to through a friend of mine. She invited me to Skid Row to help with a clean up she had organized. I’d been through Skid Row before – but never not in a car. Today there was no car, only me on foot in the midst of the largest homeless community in the United States. 

It was Saturday morning at about 11:00 am, so this was about as good as it gets down there. It was eye-opening.  There were people literally laying everywhere. But one thing I noticed … there were no stores, nowhere to buy anything.  But what there was, were soup lines.  There were several of them, pretty much all put together by local churches.  I felt like I was transported to an area that had just been hit by a natural disaster – a hurricane or tornado or something.  But there wasn’t anything natural about this … just disaster.

After about a half an hour, I found Special K and I helped her organize a crew of about fifteen others and began cleaning the sidewalks, the streets and anything that needed it. There was one thing that surprised me though.  There was hope.  Not everybody acted down and out.  For example, there was Richard.  Richard had just moved to Skid Row – not that he had to be there.  He had just moved from Laguna Beach (high rent district for those of you not familiar with Southern California).  He moved here to help, it’s where he said he belonged.  

One of our most energetic workers was an attractive young woman named Veronica.  I thought she was just another of the volunteers like me … but she wasn’t.  She’d been living on the streets in Skid Row for the last two and half years.  I commented that she didn’t look like she was in the situation she was. This was her response:  

“I may be homeless, but I don’t have to look like I’m homeless.  If I look like I’m homeless, I’ll always be homeless.” 

It kind of takes, “faking it till you make it” to a new level – doesn’t it. I know if I’ve ever met anyone like Veronica. I can say my life is better because it. And I thought … what a day as I got on the bus for 90 minute ride home. I’ll just use the time to relax let everything sink in.

Twenty minutes into my ride back to West L.A., we turned onto Wilshire Blvd. Wilshire was my old stomping grounds. On two occasions during the time I’d lived in Los Angeles I worked on Wilshire, mainly mid-Wilshire or Koreatown. Shortly a young Asian woman and what turned out to be her parents got on the bus. They were all well-dressed, not the norm for the bus. The young woman sat in the seat next to me and her parent in front of us. They spoke what I found out later to be Mandarin. She spoke English, but they didn’t. After a brief conversation, I found out she was going to school at UCLA and this was her parents for the first time in the United States. They wanted to take the bus so they could get a “real” feel for the city. This was my opening.

I spent an hour playing tour guide: The Ambassador Hotel where Bobby Kennedy was shot, Koreatown, Little Indonesia, The LA Museum and the La Brea Tar Pits and even the ARCO headquarters, home of Armand Hammer who launched the Los Angeles oil boom.

Around 4:00 pm I got off the bus, alternating between being mentally exhausted and hyper-stimulated. Whatever it was, I was charged up – and only had a ten minute walk to  Alex’s apartment. I was wrong. Ten minutes turned into an hour.

The weather was great and people were walking their dogs and generally milling around in Alex’s neighborhood. A block from Alex’s I saw an old woman sitting on her 2nd floor balcony. I yelled up at her, “Good afternoon.” She responded back and inquired about my day. My response was a 90 second recap of my engagement filled day. Then she invited my up for a cup of coffee. At first I though, I should just get home – I’m exhausted. But then, how many times does this elderly women who looked close to ninety years old get a chance to entertain. I accepted. Margaret it turned out to be was a Holocaust survivor. For almost an hour she recounted her journey to the United States after being liberated from one of the camps. Fortunately she had only spent a short time there. 

Now she lived in West L.A. nestled between Beverly Hills and UCLA, one of finest institutions of higher learning in the world. If that isn’t the American Dream … then what is?

I don’t if could have made up the stories that comprised that Saturday. But I do know that none of it came to me without an effort on my part. I initiated each the encounters I had – and because of it I’ve added so much to my life and the make-up of who I am. And that’s only one day. It would have been easier just to listen to music on my iPod consumed by my own thoughts and songs I’d heard dozens of times. And plenty of times that’s exactly what I’ve done. It’s easier to stay in your comfort zone. But that Saturday … I didn’t.

We only so many minutes in life. It’s easy to dismiss that, thinking that what’s a few minutes, or an hour or two – or even a day. What it is an opportunity lost. It’s an opportunity lost to become a better person, to enhance your well-being … and most of all help others do the same.

Time is the bedrock of scarcity. If a person isn’t doing something meaningful in a given moment, he’s doing something less than meaningful. By meaningful, I don’t mean productive, in an economic sense. I mean important to the person, to her own well-being.  It’s not that we should be doing something meaningful with our time, it’s that we want to do. We want to express and receive affection. We want to be part of a group, a community. We want to be accepted. We want human contact.

Our goal as a society must be to accommodate this need to engage, not create barriers. We have enough of those right now with the often generationally-driven entropy of community dissolve that is making isolation the norm rather than the exception. The higher our level of engagement is individually and collectively, the more well – physically, mentally and socially we will be.

Salutogenesis, Engagement and Self-Efficacy

Salutogenesis is a term coined by Aaron Antonovsky, a former professor of medical sociology in the United States. The term describes an approach focusing on factors that support human health and well-being, rather than on factors that cause disease (pathogenesis). More specifically, the “salutogenic model” is concerned with the relationship between health, stress, and coping. Antonovsky’s theories reject the “traditional medical-model dichotomy separating health and illness”. He described the relationship as a continuous variable, what he called the “health-ease versus dis-ease continuum.”

In 2008 Scotland, specifically Chief Medical Officer Sir Harry Burns, adopted salutogenesis as national public health policy. Burns helped Scotland conceptualize health improvement differently, being aware that the small gains that resulted from a range of interventions can add up to produce significant overall improvements. Much of these interventions were and are aimed at empowering the populace through engagement with their own health outcomes.

Self-efficacy cloud

Engagement creates agency and self-efficacy. Self-efficacy is defined as the extent or strength one believes in their own ability to complete tasks and reach goals. The more a person believes their actions will help their situation, the more likely they are to try. The key is to “get the ball rolling” by nudging activity and engagement – personally, socially and civically. The more a person does, the more they’re likely to do. And the more they do, the more they feel what they’re doing is helping … creating a cascade of positive results and well-being. In other words – well-being can be learned.

In America there is little effort put into getting people to engage directly with their health and personal well-being on the part of the established healthcare industry. Healthcare providers seem to be reluctant to relinquish control. However transferring some of this responsibility to the patients will prove beneficial to them. And it’s not just focusing on themselves physically that causes impact. Nurturing altruism and benevolence by doing good things for other people takes their minds off of their own ailments and gives them purpose beyond just their condition. If they can’t actively participate in hands-on volunteer projects, then they can at least feel they’re part of the solution by experiencing the joy of giving vicariously through attendance.

Well-being, Hope and Role of Community

What if we designed our communities around the idea of maximizing engagement. The more engaged our residents would be … the more empowered they would be and feel they were more in control of their health and their futures. Imagine if a chance to engage, whether it was physical, mental or social was just around the corner. And what if opportunities to help others realize the same were part of the fabric our daily lives. What if our physical security and well-being was not dependent on government assistance or the whims of a fickle market driven economy. What if our neighborhood was our safety net, a safety net that knew best in a neighbor’s time of need. And what if the streets of our community became melting pots of serendipity – places where curiosity was bred and benevolence was the norm.

What if engagement and well-being was how a community measured itself, not obtuse economic activity often distorted through the one-dimensional filter of irrelevant statistics. What if we fixated on what we “could,” rather than what we “can’t.” And what if getting up in the morning was a chance to nurture our hope … and engage with other to help them do the same.

What we need is a conduit that can help us build towards communities of engagement. We need a vehicle that connects the dots in our communities and makes its resources not only accessible – but actually taken advantage of. We need something or someone who will help us engage.

Melvin … Your Well-being Bot

Amazon’s digital personal assistant is called Alexa. To say it’s been a runaway success is an understatement. Originally created to help you buy more Amazon products easier – if that was even possible, Alexa has turned into a repository of over 10,000 possible lifestyle automation uses and applications. It controls the heat in your home, it gives you definition (by voice) and provides recipes for the finicky guests at your next dinner party. And everyday its uses only multiply.

Imagine if you had an Alexa for engagement. Imagine if you had a virtual assistant that gathered possible ways you could engage with your body, your mind and socially with your community. And imagine if these were sorted, prioritized and through messaging motivated you accordingly. These messages could be based on advice from your doctor, your relationships with your neighborhood small businesses or even alerting you of volunteer opportunities. Your notifications, whether they be via text or email, would be your conduit to engaging with the environment around you.

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Melvin

I call this conduit MelvinMelvin is your vehicle to well-being – and physical, mental and social fitness. Consider it your well-being bot. What you call your version of Melvin is completely up to you. And what it, he or she looks like is also up to you. Regardless of the form or identity your Melvin takes, it’ll be what connects you to your community to help the you navigate the road to engagement, self-efficacy, empowerment and well-being.

Being well is not just something you do … it must be a basic function of your life, like breathing. Melvin is a communication vehicle that conditions our decision-making process to automatically act healthy and enriching through a ubiquitous immersion of positive engagement prompts, internally and externally. Personalized communication will encourage positive behavior change maximizing all the resources of not only your healthcare provider, but also the community – including the small businesses you frequent. Those participating in the Community 3.0 network will be encouraged not to just “sell stuff” – but be part of the solution by acting responsibly. These businesses, as well as your local non-profits, will organize what we call Solutions, or volunteer projects designed to strengthen the social fabric or of the community. You in turn will strengthen your sense of empathy and altruism – heightening the level of your well-being.

Community 3.0 is a civic ecosystem that connects local businesses to its customers by solving their community’s problems directly in addition to marketing their services, products and events. These participating businesses, or Front Porches, are hubs of civic involvement and volunteerism. Imagine a social hub where like-minded people can come together just to do good for the neighborhoods we all live in. Community 3.0 represents a new decentralized way of affecting change in our communities. Rather than passively waiting for government to fix what civically ails us – the 3.0 network mobilizes you and your neighbors to act directly using the small locally owned business community as its center. And at the core of all of it is Melvin.

The bleedingEDGE Communication Platform is the “black box” or brains of Melvin. It’s  Community 3.0‘s technical database backbone connecting its Members (and their Melvins) with the community. The bleedingEDGE Platform enables healthcare providers, small businesses and non-profits to create Engagement campaigns (single or multi-piece future-timed) that can be activated by any one or combination of pre-programmed triggers. These triggers are customized according to preferences and conditions set by both the Community 3.0 ecosystem and you (through Melvin), the recipient of the communications. 

 All these Engagements then flow into your personal Melvin which in turn sends the appropriate prioritized notifications to you directly setting you on the “Road to Your Perfect World” of health and well-being.

“A person is a person through other people” strikes an affirmation of one’s humanity through recognition of an ‘other’ in his or her uniqueness and difference. It is a demand for a creative intersubjective formation in which the ‘other’ becomes a mirror (but only a mirror) for my subjectivity. This idealism suggests to us that humanity is not embedded in my person solely as an individual; my humanity is co-substantively bestowed upon the other and me. Humanity is a quality we owe to each other. We create each other and need to sustain this otherness creation. And if we belong to each other, we participate in our creations: we are because you are, and since you are, definitely I am. The ‘I am’ is not a rigid subject, but a dynamic self-constitution dependent on this otherness creation of relation and distance”. (on Ubuntu Philosophy Michael Onyebuchi Eze)

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In the United States we’ve elected a president who ran on a platform that he would make things different, that he was the only one who fix all our problems. He would wield his magic wand and shake his fist and all us minions scraping for crumbs on the street below would be lifted up set on out way to prosperity. It doesn’t work that way no matter who says whatever they say. The government isn’t a replacement for personal responsibility and legislation isn’t a replacement for engaging with each other and experiencing each others worlds.

Our opportunities and solutions lie next in us and next to us. Only when we wake up to that fact will we realize what is means to really be human and maximize our potential in this world. And if a little prodding from a bot named Melvin can help us shake the cobwebs out … all the more power to us.

You can find out more about the Melvin Initiative and Community 3.0‘s efforts to improve the human condition at the initiative’s dedicated site here.

100.4°

What is it with 100.4° No matter what cancer doctor you talk to, that’s the magic number. Your temperature hits 100.4° you better get your butt (as well as the rest you) to the hospital. Chemotherapy trashes your immune system and an elevated temperature, even at that level, signals an infection – probably one you’re not going to be able to combat on your own. But 100.4° … I suppose there’s a reason.

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Touch someone

Friday, 5:00 pm – 99.6°I knew a had cold since my Dad has been coughing around for the last few days. I was hoping I wouldn’t get it, but no such luck. Compared to the chemo drugs I was given two years ago, these are supposedly more intense, so I’m suppose to be even more careful. “Stay away from sick,” my doctor said. Easier said than done considering I’m also a caregiver and I can’t control the comings and going of my parents., especially my father. No matter how I gripe there needs to be a change in behavior – it’s naive of me to think it’ll happen. These are my cards and I better just play them the best I can.

Friday, 6:00 pm – 100.0°: Not good. Considering it take an hour plus to get to Billings Clinic, I better start preparing. Drank two glasses of water first, not that I was thirsty, but I felt I should. Make sure the phone and hotspot (remote charger) are charged and my bag with my meds is ready. Nothing else really matter. If I have to spend the next day or two in the hospital then, what I have on, sweat pants and my Vikings jersey ( the draft is coming up) will have to suffice. My dad said he’d drive me, but regardless of my condition I’d rather tough out the drive than worry about him night driving at 89 years old. Just more stuff that figures into the equation … not insignificant stuff though. Made the call to Billings Clinic and now waiting for a call back from whoever is on call in the cancer department.

Friday, 6:30 pm: Got a call back from the doctor. He was a good guy. He didn’t seem worried since it had only been two days my treatment, the white blood cell accelerator shot they gave me (Neulasta) probably hadn’t kicked in yet. “Give it another day or two to boost your immune system.” I took my temperature while on the phone and it was 99.4°. The value of proper hydration cannot be overstated, especially when they fill your veins full of the equivalent of battery acid. Hell, the nurses wear protective outer gear when they set up the infusion. The afternoon nap – with no water, apparently did me in. Lesson well learned.

Friday, 8:30 pm – 99.6°: I’m in bed. This obsession with the thermometer is getting old … necessary, but still old. I’m trying to read, and can’t really comprehend much. My brain isn’t working, plus I’m distracted. All I can think of is the possibility of driving an hour plus to the hospital in the dark with my eyes not being able to focus. The chemo has done a number on my senses. I don’t hear, taste, smell or see like I did. The army of chemo brain simpletons have taken over my very being. But this is the first time brain fog has set in since I started treatment about a month ago. I’ve actually been cerebrally active and very creative. Before this last session earlier this week I thought, “these new drugs aren’t going to be a problem. I’m tough! I’ll just do a Ninja Jedi mind trick on my body.” After all, I’ve always been a big proponent of “mind over matter.” Apparently the simpletons didn’t get the memo. This sucks. This can’t be the new norm for the next five months. More water. I have to fight this. Maybe it’s dehydration.

Saturday 1:00 am – 99.5°: More water. To the bathroom … again. It used to be I wanted to be one with my body – in sync and in control. I don’t want that anymore. It feels like I’m at war with it. The lymphoma gives me headaches, not bad, but there nonetheless. But I still could function with a couple Advil. However the chemo seeks out every corner and function of my body and attacks. Just when I think I’ve countered it, it outflanks me somewhere else … or even in the same place but using different tactics. Normally this time is when I wake with creative abandon, synthesizing new ideas. Now the synthesis is doubt – scary doubt that is undermining my emotional fundamentals. And for some reason laying on left side make this worse. Roll over. More water first though.

Saturday 3:00 am – 99.2°: Coming out a dream feels like an exorcism. It’s not the dream itself so much, as it is just waking up. It’s physically draining. And then the war with the body starts again. The stomach this time. I have to stay away from the anti-nausea pills though. They wreak havoc on my digestive process.  Grab a Boost and do the Jedi trick. “Mind over matter” I keep telling myself. Hope I can get back to sleep. My mind is building on the previous negative flow. Why can’t that go the way of the chemo brain and have the simpletons take away the negativity. I couldn’t be so lucky.

Saturday 5:00 am – 98.9°Walking up the stairs to the bathroom shouldn’t be a major undertaking. But it is. More water. Temperature is better though – a little. Looks like the doctor was right and the white cell stimulator has decided to show up – kind of like the French in the Mel Gibson’s movie, Patriot. Better late than never. I have to get up though. 5:00 AM is the start of my creative time. It’s dark and quiet and when I’m productive I feel I’m a step ahead as the rest of the world when it sleeps in. Today productivity is out of the question and the way I feel – for the foreseeable future. I want to lash out at someone – not so much for the cancer, but for the cold. The chemo has changed the physiological composition of my brain. My Frontal Cortex has been burned, literally. At least it feels like that. My bullshit resistance has been worn thin, if not completely. My patience level has dropped precipitously. Front and center in my wrath is the media and politicians. Just having CNN this morning is driving me insane. “How can they not connect the dots. It’s right there in front of them.” And I was already well on the way to being like this before the chemo treatments even started. 

Saturday 7:00 am – 98.7°I don’t want to be up anymore. I ate, which is a good thing. And anything that is going to help me can be found in bed as well as sitting in a chair in the living room. More water though. The local grocery store opens at 9:00 AM – so getting it together to drive six miles is a worthy goal. I can go back to bed until then. Today is about food. And tonight is spaghetti. I may be at war with my body … but the war is only a figure of speech. Food is my friend, and food is what is going to get me back. Exercise – that’ll come later. Right now my limit is a six-mile drive … not a three-mile walk.

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Sunrise_1

It’s three days since the interlude I described above. It wasn’t the first time and I’m pretty sure it won’t be the last time I have a dance with the number 100.4°. I feel better since the Neulasta (the metaphorical French) seems to have done its job. My body is still in ten levels of craziness … and probably will be for the next few months. And my physical energy level is shot right now. But I can think. My brain works again! I’ve battled the cerebral simpletons, and for now I’ve won. Hell, I wrote this post. That’s worth something. I make no guarantees on the typos though. I’m claiming I deserve a grammatical “get out jail free” card this time.

In my first post on the cancer subject two years ago, I wrote I almost looked forward to the changes in attitude and perspective that would the experience would bring me. Well, I’m done looking forward to any of it. I’m not a better person. I’m not thankful for anything I wasn’t already thankful for. I haven’t gained any new insight. However I got a lot of love from my Twitter world – which I have nothing but love for back. And a few people around here (in my physical world in Montana) gave me positive vibes. But second time around the novelty kind of wears off though – for most everyone. It is what it is. “You didn’t die the first time, so you probably won’t this time either.”

However there’s one thing, actually a pretty damn big thing, that came from this. In the month between the my first and second sets of chemo treatments – I fleshed out a project that I’ve had on the back burner for five years. This project, the Community Healthcare Concierge (CHcC) is a position, or actually a process, that expands on the idea of a healthcare navigator by connecting it to the community as a well-being resource maximizer. Think of the CHcC as a point person for a larger community well-being initiative. Using the technical backbone I developed for the Community 3.0 small business marketing and loyalty platform, the initiative integrates Engagements or prompts emailed and texted to a person to convince them to do something that’s good for them. These Engagements can be activities specific to their body, their mind or even their role in the community. It’s the implementation of the concept I raised in the post, Well-being, Hope … and the Role of Community.

If I didn’t have a relapse then I probably wouldn’t have had the impetus to put it all together, especially the database programming. So I suppose that’s a good thing. Regardless, this was the easy part. It was probably still in the synaptic morass of my brain somewhere, Sooner or later it would have shown itself. The hard part is the implementation. And doing it while fighting cancer opens up a whole another can of worms …including my compromised immune system and a probable encore dance with the 100.4°.

This stretch of bumpy road is far from over. My prognosis is supposedly good but who really knows. All I do know is I’m on the journey. The journey is mine and I have to own it … which I have every intention of doing – today and in the future. Fortunately I have a good set of shocks … and a good thermometer.

Note: I invite everyone to explore the Road to Your Perfect World … potholes and all, the site I put together for the Community Healthcare Concierge project. Your input and suggestions are welcome and I’m open for collaboration of most any kind. The days of being proprietary are many Mile Markers behind me.

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Related Posts:

Well-being, Hope … and the Role of Community

From the time we’re barely old enough to walk, the concept of “what we’re going to do” is instilled into us. Our parents have these grand aspirations for us – and rightly so. Society has always pegged the idea of who we are firmly encased in our occupation. And the higher paying these”jobs” are, the higher the level we can rise in society’s caste system. 

We devise these elaborate career paths that take decades to unfold. This is supposedly the road to our Perfect World. Yet often we put little thought into where the path is going to take us and what this illusionary world will look like once we get there. We become doctors because our parents want us to. Or we become lawyers because … well, that’s what smart kids are supposed to do. Occasionally we let marriage and child rearing interrupt us, but often not that much.

Society tells us this is what is expected of us. To not perform according to the norm is considered irresponsible. If we object there’s always someone to tell us – “No you’re on the wrong path. You’ll never get to your Perfect World that way.”

But what if this Perfect World of career proclamations isn’t who you are? What if the whole idea of “what you’re going to do” isn’t what you want to define you? What if your Perfect World wasn’t so much a place or an illusionary utopia, but rather your journey of life? 

For many, a few more dollars pale in comparison to being able to coach their son’s baseball team or be there to commiserate with their daughter doing her homework. And why shouldn’t it be?

Nilofer Merchant has been an advocate for Onlyness. In a piece by Esko Kilpi, he quotes Merchant: “Onlyness is what only that one individual can bring to a situation. It includes the journey and passions of each human.” While her context is a bit different from mine … I think we still end up in the same place. We both believe we are much more than a title on a business card; cringing at this societal obsession we have of basing our value on “what we do;” with “what we do” being nothing more than what happens between our morning and evening asphalt commutes.

My idea of the Perfect World isn’t one that fits on a 3 1/2 by 5 inch piece of cardboard. What if your business card stated what you really cared about and what you were doing about it.

It could say:

“Every day I spend an hour with my daughter walking around the neighborhood. I ask about her day and make sure if there was anything I could do to make it better.”

Or:

“I spend my weekends volunteering at the homeless shelter teaching technology to the residents there to better their lives as a contribution to my community.”

Or even:

“I write 500 words day and read a book a week in pursuit of my journey as a life long learner in hopes that someday I can do something for my city that no one else has.”

I look at my Perfect World that of a journey of well-being. I don’t mean strictly physical. And it sure isn’t the pursuit of more money just to buy more stuff. Of course we all need to work to sustain ourselves and our families; but does it have to turn into a materialistic obsession of “keeping up with the Jones” under the auspice of some antiquated version of the American Dream.

The Quest for Well-being through Self-Actualization

In his iconic hierarchy of needs, Abraham Maslow described the five needs humans strove to attain. At the top and most cerebrally advanced, he listed the need for self-actualization. Maslow believed that every person has a strong desire to realize his or her full potential, and the road to reach this full potential was the quest for self-actualization. A self-actualized person enjoys “peak experiences” high points in life when the individual is in harmony with himself and his surroundings. Later in life, Maslow explored self-actualization further. During this exploration he found an additional dimension of actualization – one of wanting to achieve goals outside oneself, through altruism and spirituality.Well-being cloud

I equate this quest for self-actualization and “peak experiences” to experiencing well-being. Simply put, well-being is having hope. As long as one has hope, they can look at their journey as significant and worth living to its fullest; fullest in the greatest benefit to themselves and those people and things around them. So how does one goes on this quest of well-being and being hopeful?

Let’s look at three components of well-being: physical, cerebral and spiritual.

By physical, I refer to the body and it’s upkeep. To maintain this upkeep one needs be physically fit. This is accomplished by exercising regularly, eating well and limiting oneself to negative illness causing pathogens. Unfortunately, even if we do all these things, our bodies still need help. Our access to professional medical care, both preventive and after the fact, is also imperative to physical upkeep.

“What a man can be, he must be.” – Abraham Maslow

The second aspect of well-being is the cerebral component. However important the body is, it’s there only to provide the vehicle for the brain and things it can conjure up. The well-being goal here is ultimately the pursuit of Maslow’s concept of “self-actualization” – to be everything we can be, both for ourselves and for those around us. For example, one individual may have the strong desire to become an ideal parent. In another, the desire may be expressed athletically. For others, it may be expressed in paintings, pictures, or inventions. 

But later in life, Maslow explored a further dimension of needs, while criticizing his own vision on self-actualization. The self only finds its actualization in giving itself to some higher goal outside oneself, in altruism and spirituality. He called this dimension or level Self-transcendence. It’s this level that we must ultimately strive to attain. For with it, a community will reach its potential in its quest for inclusive positive societal evolution.

To embark on this journey we have to look past the development of just ourselves. We have to look at our development in context of what it can do for our community or social grouping. The Scottish philosopher David Hume theorized that humans were inherently benevolent and if given the choice they would help another, rather than act selfishly. Our goals both individually and as a group should be to create a means or environment to enable us to unleash this inner benevolence Hume spoke of. Fundamental to this is nurturing our curiosity to become a life-long learners as well as developing the cerebral capacity to evolve and change for sustainability for oneself, one loved ones and others we may be responsible for (human and other).

Finally we must address the spiritual component. By spiritual, I don’t necessarily mean religion, organized or other. By spiritual I assume one’s need to believe there is a greater power that has influence over them. Whatever one believes this power is, is entirely up to the individual; and at no time should they impose their beliefs or lack there of on anyone else. Spirituality is not an excuse for ideological tyranny, or attempts at it.

The Role of Community in Personal Well-being

The pursuit of well-being cannot be limited only to our efforts internally. We don’t live in a vacuum. We are products of our environments. We must create environments and communities that nurture well-being and hope by creating avenues for us to engage with our world and express our curiosity and creativity … and as a result our inherent benevolence? Our communities must make “helping others” the societal norm … supplanting that of just making money and climbing ladder of the economic caste system.

And these avenues and communities can take place anywhere.

At Marion Correctional Institution, in central Ohio, inmates have not let their incarceration let them from pursuing their road to well-being.

Five years ago, to keep busy and give himself a sense of purpose while doing his time, Robert Cooper, a resident of Marion for the last fifteen years – joined several other men at the prison to start an organization they named Green Initiative. The original project was to start a garden on prison grounds so the men could be outside more, fill their days productively, and have fresher food available to them and their fellow prisoners. The men now grow crops on an acre and a half of land; last year they gave away 15,000 pounds of vegetables to the Salvation Army and local churches and community programs. Green Initiative also raises bees and has built a greenhouse to grow hydroponic herbs and raise tilapia in an aquaponic system. It started the prison’s first recycling program, diverting more than a million pounds of garbage from landfills in 2013 alone.

Cooper says the program gives meaning to his long days behind bars and offers a way to show others that he has changed. A gangbanger during his first few years in prison, today he’s affable and polite. All that’s left of that former self are the tattoos on his knuckles, which he says he wishes he could erase.

“A lot of guys give up on life in here,” he says. “That’s something I don’t want to do. I got kids. I got family that I actually want to make proud of me.” He pauses, clears his throat and adds: “I done enough for them to dislike me. I’m trying to make them where they like me again.”

The need to engage, and spur interest and curiosity is also fundamental to successful educational programs, whether in schools or in the real world. Engagement happens when a person finds something that is relevant in their journey to their Perfect World. Once this relevance is recognized – a person engages and does what I call a “deep dive.” A “deep dive” is the action of performing critical thought to the point of extreme cerebral satisfaction. This is not unlike the release of endorphins an athlete feels after an exhilarating physical activity. This is my version of Maslow’s “peak-experiences.”

What if we designed our communities around the idea of maximizing these “peak-experiences” for all residents; where a chance to have a creative or social “deep dive” was just around the corner. And what if opportunities to self-actualize through helping were part of the fabric our daily lives.

What if our physical security and well-being was not dependent on government assistance or the whims of a fickle market driven economy. What if the neighborhood was the safety net, a safety net that knew best what was needed in a neighbor’s time of need.

What if we designed communities with the idea that options for cerebral engagement – engagement that would stimulate the mind, cultivate curiosity and engender hope – where omnipresent even in people and places no one thought it would exist.

What if the streets of your communities became mixing pots of serendipity – places where curiosity was bred and benevolence was the norm.

What if engagement and well-being was how a community measured itself, not obtuse economic activity often distorted through one-dimensional rose-colored glasses. Rather than focusing wholly on jobs for “hard-working folk,” we create paths for “hard thinking” people. What if we fixated on what we “could,” rather than what we “can’t” – making our communities even better than they already are.

What if getting up in the morning was a chance to experience and nurture our hope … help others do the same.

This is my Perfect World. This is Community 3.0.

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If you haven’t, I invite you to start by delving into my ideas by reading the 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 follow me on Twitter at @clayforsberg and on Google+.

A Pothole in the ‘Road to My Perfect World’

Update 2/26/2017: Last MondaI found out I’ll be going back into chemotherapy treatment for another six month session. Tomorrow at 7:00am I start the process. My remission was short-lived, about 18 months. Fortunately though a DNA test showed the prognosis is good even though this session will be more intense with more side effects. The treatment is more specific so hopefully it’ll be more effective. I probably should have known I wouldn’t have been let off this easy. So be it. I’m ready though. I have way to much to do – and the momentum is on my side.

As I’ve always said. Adversity is a battle of persistence. As long as you keep up the resistance and keep up the fight, it will relent and go elsewhere where the fight is easier. Well here’s to the fight … and bring on the experience it gives me!

“Life is 10% what happens to you and 90% how you react to it.” – Charles R. Swindoll

Twenty years ago I coined the phrase ‘On the Road to Your Perfect World’ (which is the name of this blog). I was recruiting at the time and wanted a way to describe the journey my candidates would go on during their professional and personal lives. Rather than always looking at the ‘end game’ or the destination, I wanted them to look at their careers as a journey and each step an experience that should be appreciated on its own right. Experiences are to be savored, not just looked at as another vehicle to more money or the next possession.

During my time on this earth I’d like to believe I’ve had my share of memorable experiences. I had the opportunity to raise a great daughter, one who has turned out to be a very interesting and unique young woman. Alex is first and foremost my number one source of wonderful memories.

Also I’ve done a lot of cool things professionally. I promoted rock bands to get me through college. I learned how to program by delving into alternative energy in the early ’80s (which I still use today). I published commercial art and printing directories while thoroughly immersing myself into an industry I never thought I’d even dabble in. This immersion would end up occupying a major part of my life as I transitioned into representing the industry’s talent, guiding them in their careers as a headhunter. These fifteen years as a recruiter gifted me an enormous amount of insight into people and their relations, professional and personal.

I’ve lived in some great places, even including a tent for three years. While being homeless might not be considered great by most – for me it exposed me to wide breadth of people who have made me a much more empathetic and whole person. These experiences I wouldn’t trade for anything.

And now I’m on the final stages of putting together my most significant professional venture to date. Community 3.0 is a community empowerment platform that I hope will change the way we civically interact with each – as well as provide ‘Main Street’ with the tools it needs to survive against the onslaught of Wall Street and our governments compliant in their actions.

While by no means has the ride been smooth, but nor should it be. What do they say, scars create character. Or as I mentioned in my bio, “it’s like a ‘box of chocolates, sometimes it’s good and … well sometimes, it’s like those awful ones with the cherries in them.” (Kind of a variation on the Forrest Gump thing.)

pothole

Well last week I hit a pothole on the Road to my Perfect World.’ Not one of those that pisses you off, but rather one where you bottom out and then you pull over to see if your car is still together.

Last Tuesday I was diagnosed with cancer, specifically Lymphoma. My body is producing about twenty times the white blood cells it should … for no reason (except that I have cancer). I don’t need to go into detail on the specifics other than that. Today I begin chemotherapy, a process that initially will take about five months.

I had cancer once before, soft tissue type in my leg twenty years ago. Specifically, I was operated on the day of the Rodney King Riots in Los Angeles, where I happened to live at the time. (That’s a whole another story.) But this one is different. It won’t be eradicated by one three-hour surgery and then three hours after that I’m home. This time the specter could be hanging around for a while.

What are you supposed to do when you’re told you have cancer? Call your family and friends I suppose. I talked to my daughter, which was extremely hard. Alex and I are close and I worry (maybe unnecessarily so) about how she’ll feel if something happens to me. I’m helping out my parents here in Montana so they found out right away – since it directly affects them. And then after my treatment was set up I talked to my sister, Christy, in Nebraska.

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Billings Clinic – my new home away from home

But more so, how are you supposed to feel? What’s the proper reaction? I suppose it’s different for each person and each prognosis (That’s such an ominous word. I get images of the grim reaper in a black robe just waiting to call my name.) Fortunately my prognosis is good.

For a while I sat back and took inventory on my life and tried to figure out whether I did this to myself and what I could have done differently. There’s no point in beating myself up now though. Obsessing on it is counterproductive. At present my health is good (aside from the obvious). I eat well, work out, don’t have any bad habits (anymore) – and have a copious amount energy. I just happen to have ticking time bomb inside me.

I’m not sad or depressed. I’m not mad (well at least not much). And I’m sure not going to get all religious. I’m well aware what’s going on and there’s really not a lot I can do about it. When I got the diagnosis they gave me a folder of stuff to read and places I can call for support. I really don’t want to call anyone else though. I’m not looking to commiserate or don’t want any ‘I’m sorry this is happening to you’ condolences. I know this works for some people … but not for me. If anything – I’m motivated.

Alex told me about a couple of books I should read while getting my chemo treatments. She said I shouldn’t worry about anything but getting well. And I shouldn’t try to multi-task since it doesn’t work anyway (which is true).

Regardless of whether I should or shouldn’t be doing anything else … I probably will. To me everything is a project. And just because a new project lands on the plate doesn’t mean all the other ones need to be pushed aside. Resources just need to be reallocated and timetables need to be adjusted. I have things to do.

Once my diagnosis came in and my insurance company approved my treatment … it was on to the planning stage. My normal physical routine will probably need to be adjusted after the chemo starts, so it’s been full-on for the last few days. Any of my normal tasks that can be done, either for myself or my parents (being a pseudo-caregiver) need be done now before my energy level wains. The last couple days have been filled with yard work and cleaning as well as planting my garden (my kale and herbs can’t suffer just because of me getting cancer).

Hopefully chemo doesn’t affect my mental acuity. Maybe my brain won’t be focused as normal, but it is what it is. I would guess that distraction is a pretty normal side effect. But it can’t be any worse than the last couple weeks waiting to find out what ails me and whether or not it’ll put me in financial ruin (which I found it won’t). I was going to post a follow-up to my last blog piece, ‘Bridging the Gap’, this week (Part Five of the series). Hopefully it’ll come out next week.

Alice in Wonderland

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.

It should be an interesting ride.

“I may not be well … but I’m doing well.”