Pump it up

Yes, I know I’ve been pretty quiet lately. That’s usually a practice of self-preservation when things get a little too tough or maddening in some cases. It’s not easy when you feel like you’re being held hostage, or your privacy has been betrayed, or your deepest aspirations are crushed, and those who say they care still can’t respect your wishes. All that with a crushing amount of unknowns and you have quite a mental case to deal with.

But sometimes it takes that last straw as they say when a combination of poor communication and/or incompetence puts a halt into your life going forward. Like once before, when I felt that a key figure in your main-line of care doesn’t care, somebody has to take charge and once it again it had to be me when nobody else would.

Unfortunately despite the stellar knowledge and care of my doctor at UC was horribly mishandled by a portion of his staff and I had to wash my hands of that relationship. I’m now fully under the care of those at the Hansen Center in Batesville. I came in with MY educated decisions and presented them to my new oncologist and team, and without any further objections and with a few adjustments I began a new regimen today in a second phase of controlling my disease. The infusions were many and I even went home with a infusion pump I have to wear for 46 hours. That all really sucks in a way, but taking action and moving forward is way more important than how and what needs to be done to continue knocking down those odds. This new regimen will repeat every other week.

The timing and the ability to go forward still has the utmost importance as the possibility of time always being compromised is there, and goals, a/k/a travels, are still the priority. I can’t make plans if I don’t know what my treatment windows are, and I’m itching to go.

If all goes well, despite some significant logistical issues I have to absorb, the last 6 of the bottom 48 states will be conquered at the end of the month through the 4th of July holiday. In the meantime have to see how the overall reaction of my first treatment goes, but I fully expect to commit to the trip within the next few days.

Another development it seems bittersweet to share is my loathing of gimmicky patriotism especially by the continued gross efforts of Budweiser feeding their brainwashed customers into supporting a $50 billion, non-American, multi-national corporation that profited $10 billion dollars last year into drinking a shitty beer to feel more ‘American’. Upon further research it turns out many of the ‘German’ beers are also owned by the same greedy company. My beer list just a got a lot slimmer, and I don’t care how much my beer is subsidized or is tied into my local hometown festival my attendance of the annual Freudenfest is likely in protest. Between the judging and almost seemingly job-like need to be present in the right places to force awkward conversation doesn’t seem so desirable this year. I may just have a party at my place for those who want to swing by to either get away or see me before or after in a more comfortable and ‘German’ setting that serves quality over quantity. You know who you are. 🙂

There has obviously been some animosity and tension in my life that has hindered some relationships and events lately, but no matter how much cancer wants to keep me down I will not give my principles up nor will I submit my independence until I simply have no other choice.

So there is your long-overdue update. See ya when and wherever I see ya!

Bravery

Fed

Last night I had the luxury of having a wonderful visitor. It was just a nice one on one where I didn’t have to share nor offend other ears or hearts. I wish it involved a little more baseball, but the Reds played an early game. Oh well. We were still rather distracted, my bad, of having some TV on which likely muted the potential conversation, but the company was welcomed nonetheless.

One of the conversations I brought up was about how I used to be radio fed back in the 80’s and 90’s. It got so bad that at point, ‘the radio’, that I began settling to listening to an “80’s” station (this was like 98-99). Here I was about to be stuck in a decade for the rest of my life like others being stuck in the 50’s, 60′, 70’s, etc. Now granted I still love re-visiting the 80’s genre from time to time. It reminds me of a simpler time, and an even more difficult time when I wanted to be immersed in it instead of being forced into religion. It was my getaway when ever I could get away from the grips of the indoctrination. It was never easy.

I will still never forget  a defining moment when I was living in Fort Wayne when an alternative radio station began playing a lot of Radiohead, Doves, Travis, and other seemingly heavy amounts of new British invasion bands that I began to enjoy music again. Also, internet radio came into being as well. The next thing you know I was no longer being radio fed. I began recognizing local musicians/bands. I wanted to be more of a part of that and I did. I realized we are surrounded by the same quality of music, and can become your peers, and you don’t have to submit to the commercial gods telling you 10-20+ times what you think you like a/k/a brainwashing.

The same thing realization has come to TV. I’ve become horribly TV fed in the past few years and man am I hungover. I’ve been TV fed mostly by MSNBC for a long time and with Comcast buying out NBC/Universal the journalists have had to fall in line or fall out. I’ve been forced to watch SNL clips and Fallon clips, or worse Today clips and Today Show throwaways I couldn’t escape (if I wanted to watch that crap, I would). The smartest shows and journalists in the business had to protect their jobs over journalistic merit.

Your vote that you so sorely think has/had merit was not picked by you. It was picked by the media who told you who they were picking for their profits/ratings. They will do it again in the fall. Your fear candidates have emerged once again. And you wonder why you’re unhappy, again.

I’ve had to find alternatives, some I have to re-visit once again, like RT that are not beholden to the corporations and their gross negligence (I have to watch online now since my cable provider doesn’t provide the option). I’ve been listening to a lot of music again and find myself writing more. TV sucks, but the tiny bit offered that I want/need requires me to buy the whole shebang. It’s not fair.

But nothing in life is fair. Fall in or fall out. I’d rather be out.

“I know you don’t want to hear this”

….then maybe don’t tell me.

I have to start making new rules. The amount of uncomfortable awkwardness I seem to bring to the table is getting to be too much for me. The answers to break this is not better. Ignore, sleep, and shut myself out seems to be all I have left. Easier for me and everyone else.

I will not acknowledge your house when I walk by.

I will not accept your untimely gifts.

I will not stare into a bonfire and sleep when I’m not.

I will not cook for anyone. Hold the mustard.

I will not go for that last hurrah.

I will not go for a beer and a sandwich.

I will not harass you to come over.

I will not tell you how I’m doing.

I will stop caring about your infighting.

I will try to thwart the NFBP. I find this mostly impossible.

I will stop listening when you say everyone looks like Obama’s brother.

I’ll let you sleep when you’re done with rampant racism.

I’ll be sleeping when it continues.

I’ll be long gone long after it resumes/never ends.

Be happy with your fears, but keep them to yourself. As will I.

Hope is laughable apparently.

 

You’re welcome.

 

18 months ago

Today marks 18 months to the day I walked out to Fountain Square in Cincinnati with a different life than I had ever known before; terminal cancer patient. 4-6 months to live.

I went back to work that day. I went to My Mom’s funeral a week later. I’ve been living life and doing this so called ‘inspiration’ thing as best I could in the past 18 months.

Yesterday I needed some information to just make a needed transition since round one was essentially over, albeit successful. One mistake has turned into a disaster.

The scan was not transferred to my oncologist in Cincinnati. Basically my fault, but I corrected the mistake, got the CD, expressed it via USPS to Cincy for a 1:30 ‘board review’ today so a decision could be made.

It never made it there. Lost. And now I have to wait another WEEK without a treatment schedule and my life hanging in the balance. “We’ll call you back” has been the line of the day. Nobody has called me back regarding this.

As I wait and hope for new drugs and therapies to help the world can’t even get a CD 45 miles down the road at $23 a pop. Buyer beware. A 40 some cent stamp may have had better results.

USPS just called me. A ‘special service’ picked it up. They must be really special. The CD is still lost.

The end.

Ali

There’s always going to be people that try to hold you back from your dreams. And you have to do what’s in your heart because you only have one life to live and if you go around listening to what everyone else is and you don’t listen to yourself; then you’re going to end up being a very unhappy person. So I believe you should go for it. You know everything needs to be fought out, and you need to make sure you’re making smart decisions along the way. But ultimately you have to do what’s in your heart.

Some night/mornings like the last I find myself wide awake and the dumb box helps me go back to sleep, usually. Sometimes a little something has some substance. This was an interview in regards to Ali’s death. Obligatory breaking news and continuous coverage will be in our midst for the next few days even on the 24 hour Trump channels. Maybe. But that quote struck me. I had to rewind, record, and dictate till I got it close as possible to what she said.

She?

Yeah, she. That was via an interview with Matt Lauer in regards to the upcoming summer olympics with Muhammad’s daughter, Laila, a couple weeks ago.  The agreement she had to make with her father to box against his wishes and going into her professional career (recently retired) undefeated. She carried his traits that made him famous; not only the athletic talent, but the courage and inspiration that made them fearless. We all apt to often to live our lives in fear. I contemplate a lot when I’m on the road like my most recent trip to Utah. I wonder why we don’t ride the edge a little closer, go a little faster (when it matters between destinations, and slower when you’re inside a National Park, jerks?), seek a little more, hold back too much. Never leave the bubble we were born in. Ever see pictures from space, the moon, those explorers who saw our little blue dot who went to the farthest edges of our species? They are/were not afraid and look where they landed? We’re afraid we might get stopped, might get lost, might miss the mail, or I’ll do it later. I don’t want to get a fine, or I don’t want to die.

We cannot die unless we live.

I haven’t written much in any form lately. My past several weeks I’ve been what I call ‘nesting’. Something I’m unfamiliar with and is new to me. I think it’s a natural part of acceptance of tying everything up in a pretty little bow or at least having a glimpse for a brief moment of what I always wanted in life. A real home with all the comforts and happiness I can dream of. I’m enjoying it. Maybe too much.

With recent developments my perspective again goes into high gear. It’s about maximum value. More time seeing, doing, loving, and sharing as long as I can once again whether it be a few short months or years. I noted in my appointment the other day that I just wanted quality for the future, but I’ve gotten greedy in the past 18 months, yes, it’s been 18 months!, that now I want more, as in time quantity. In a world when/where anything is possible. I’m still neither an optimist nor pessimist, but a realist. I understand the reality but talk about gold standards and buying time. I still have eight states to see. Once I get my next chemo plan figured out I anticipate to be flying/driving again to the extreme points of exhaustion for most, let alone someone who now looks down into a gorge in the middle of a remote canyon and wonder that there is no way I can make it back up?

I keep going down the hill. Vertical up and down climbs of perhaps 100’s of feet in the gorgeous desert for a few days. Who or what’s in my mind as I slowly, but surely make my way as people pass me both of ways me all alone by myself if I’m OK?

My Mom. I had to put my own words that I shared with her in my own head. “One step at a time” for one. And “Wanting tomorrow will get me through this day”. I’ve met and meet so many obstacles along the way whether it be right here trying to adjust a medication to be more active, less active, or recently a little less sick or attempting to walk or drive a little farther in the middle of a place I’ve never been before. “Are you, OK?” is very common question I receive these days. Just happened a few minutes ago. Batesville.

I still have not designed nor purchased a shirt that says, “I’m not dead, yet”. I’ve yet to fully live so I’m not ready yet to fully die.

I’ve had yet to perfect, cookies, bread, or pitch a shutout in my mind. I’ve yet to purposefully tie a knot though I’ve created what as seemed like a million accidental ones.

I need to at least cross another half ocean. Yet I didn’t feel like walking to the farmer’s market a few blocks away today. 🙂

Stop living in fear.

Impossible is just a big word thrown around by small men who find it easier to live in the world they’ve been given, than to explore the power they have to change it. Impossible is not a fact. It’s an opinion. Impossible is not a declaration. It’s a dare. Impossible is potential. Impossible is temporary. Impossible is nothing. — Muhammad Ali