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The first step of completing a 4,000+ mile journey is driving the first mile out of town. A week ago that seemed impossible as I was literally dying at home. I was sleeping all the time, my legs were giving out, and I really felt alone. I turned the TV off and just listened and slept away to music feeling pressured to get up and go. Dishes was hard, laundry was hard, cooking was hard, and just trying to look forward and pack-up and go was daunting, but necessary.
A week later after finally taking the somewhat unprepared departure to the great outdoors I’m coming back with 6 more states visited leaving me with the two biggies; Alaska and Hawaii.
I was sick, tired, slow, and at times rather aggravated, but it’s done!
I have so much to write about with this experience. Hopefully I’ll get around to it soon.
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!
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.
….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.
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.
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.
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
I got the an opportunity to see my friend Jason perform for the first time in years and catch up a bit after the show. It was an unexpected splendid time just chatting over a beer after his set. We reminisced about the days in the Indy music scene and my photography days. After my sorting of old stuff I even dug up some old pictures of him from those days from my exhibits to share back. Though I pretty much quit photographing live music back in 2007, when I left Indy and departed for Milwaukee, I have been photographing some shows recently I think more of a to say “I still got it”. I shot not only Jason, but he now has the fortunate addition of his little girl joining him on stage. Time brings a sense of beauty.
When I mentioned and shared some of the photos I took of evening and mentioned about “still having it”; Jason mentioned about ‘finding your joy’. I think that has been such an important lesson for me in the past (nearing now 1.5 years since diagnosis!). Fulfilling what you want in life is what makes getting out of bed everyday a priority. Whether it be traveling, learning, sharing, teaching, loving, on so on, we all must (and I think most of us do) have a little fire in our belly everyday of what we’re working towards if it is subconscious. I believe it changes significantly through our life to as we evolve. What was important 20 years ago certainly is likely different now unless you had the foresight passion for something then that is still a work in progress. But as I’ve seen three sets of friends over the weekend for my Indy days that are joined by their children in each instance; it helps me define how I happy I see them and in a different light, but even watching others’ kids yesterday at a festival bouncing around beach balls in front of the stage and the energy, happiness, and care-freeness the bring to our lives.
We should take a lesson from them. Find your joy.
A number of factors, coincidences, and motivations fortunately have led me to this post for the past year. There are so many to mention so I’ll only actually highlight some of the bigger/more interesting ones.
My big trip out West last year left me with a few regrets, but the one that really stood out and ate at me from the moment I arrived home was the awe I still felt after driving through Utah. It was the biggest, and most beautiful unexpected surprise of the trip by far. I took my trip that week to take advantage of the free National Parks, yet by time I got to Utah I was already running significantly behind after getting lost in the Mojave Preserve and getting stuck in traffic on the Las Vegas strip. I passed all the exits to every National Park in Utah and couldn’t stop. Arches was the one I really wanted to see, and to add salt to the wound I noticed the one of my quarters I had lying aside for laundry once I got home had Arches National Park on the back. I needed to go back.
Of course re-visits seemed unwarranted when I had such a long state list left and swore not to do any re-visits until or was fortunate to have the time to do so.
This Spring, just like last, the state of Utah had to remind me over and over again about going back to visit the Mighty 5. I planned and almost bit one night to take that trip on a whim, but I backed down.
Since filing for disability I also learned that I could get free access to the National Parks and received my pass a few months ago. Now I can really put it to use. Also Ken Burns put out a documentary (the title of this post comes from a quote from the series) about the National Parks back in 2009 and PBS re-ran the series recently which got me even more motivated to get back out and get my last few trips/states off my list. Still, even with the generosity I received awhile back, I had to keep the ‘trip money’ for the Big Sky trip (planning that one in late June) and my hopes of finding a way to afford going to Alaska (late July hopefully). But in a nutshell I received an unexpected surprise and it opened the possibilities to make more happen this past week. My first thought; Utah.
The weather was perfect when I went through Utah last year so I was hoping to go again in late April as it will (or has) gotten much hotter by time I get out there next weekend. I know waiting could be way worse though, and well, I can’t bank on waiting till autumn or next year. No guarantees, remember!
So that is what is all my excitement is about. Aside from also beginning my treatments in Batesville and being able to attend and be closer to all of the treasures that matter in my life you may not find an overall happier person right now despite some critical transitions/unknowns I’m facing right now. I’m still very optimistic and confident I’ve got a long ways to go. Until then, I’m going to continue enjoying this ‘dance of life’.
I’m quite certain this is my first post from my patio despite being here for three weeks. Most of my time out here has been putting a little patio garden together. My hopes is I suppose is it’ll be more inviting once everything is blooming in a month or so. I’m happy to report that after a week or so of toiling with the dirt I have sprouts!
This is something I’ve been wanting to do for a long time, but I don’t having a personal patio or porch to work with since I had the bug (for a good 15 years). I opted to get creative and use containers I had sitting around plus I didn’t have a lot of space to get in the way of chairs upon getting outdoor visitors. Other than a little paint and time it’s all set. Over excited.
Aside from my trip to Indy and Milwaukee over the weekend in which I got to hang with a few friends, my streak with my family visiting continues again with the highlight being my nieces and nephew. My weather has stunk this week, but it’s still nice for them to cozy in to do their homework after school, play cards, and share some ice cream. They will be out of school in a couple of weeks so hopefully they’ll get to have some longer visits and we can get more serious about playing more baseball.
My health transitions to Batesville is a bit closer to completion. I met with the local oncologist on Monday and his staff who were outstanding and up on all the new treatments available to me which is vitally important now being my tumor markers have trended up long enough where it’s becoming more clear that the drugs that have served me for the past 17 months are no longer being effective. Therefore I have a CT scan scheduled in the upcoming weeks and will likely (fortunately) have a different drug regimen beginning on the next cycle. My team at UC will make that call and I hope to begin that next month. I’ll only get 2 of the 3 parts available for toxicity purposes and hopefully I respond to it because otherwise my only option left will likely involve traveling afar for clinical trials.
My first chemo treatment in Batesville was administered yesterday and all went pretty smoothly. I had to update them on what UC did as far as preps and deal with some slight differences in their protocols. One of the few highlights was the social services person there is my classmate who I possibly haven’t seen since graduation. She was so sweet and we chatted while I was in the chair for the last 30 minutes or so of my treatment. She also had her own personal bout with cancer in the past decade so she has a better understanding of the emotions. Also my bro-in-law joined me in my beautiful, cozy, space that has a, get this, widow seat! I don’t even need to sit in the chair. I can sit in the window for my treatment. I didn’t find this out until it was almost over. Another added bonus is I can have more than one guest! That was a unfortunate hard and fast rule when my dad and/or sisters visited me at the same time. They had to take turns.
I did find out this morning is Batesville does have a CT scanner at the main hospital, so I may end up getting here and saving a trip to Cincy unless there is concern about slight differences in machines between facilities. Either way in the future it’ll be nice to have that option. They have it all here! 🙂
Now that I’ve tinkered long enough with transitions and getting my apartment just so I’ll say it again, but I hope to get back to more writing. It’s been a crazy couple of months. It looks to be settling down a bit. Tonight though I’m excited about hanging with another high school classmate for a trip to Metamora for dinner and music, and then back to Batesville to see a local band. A carnival is town too. Just as I was writing I just made lunch plans with my sister. Boom! This rocks!
Oh, and my hard travel plans have been on hold. I had an unexpected setback yesterday, but it’s just going to delay things a bit. I plan on making my Big West trip in late June instead of making the Alaska solstice trip. Then I’m moving the Alaska trip to late July when I’ll get a tiny less daylight, but apparently less/no mosquitoes. Yes, Alaska has a mosquito problem in ‘mid summer’. If that all goes well I’ll be at 49 states!
Ok, I’s got to go. Thanks for reading and checking back. Don’t forget to look at the calendar in case I’m in your neighborhood. I’ll be in Madison, IN next weekend for the River Roots Festival. Fun fun!