From Then to Now: Plans for the next AT Trip

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From Then:

A lot has happened since February, so much that this blog needed a new name “The Appalachian Trail: in the footsteps of an artist”.  Here’s a one-paragraph highlight: I have continued to paint and am gradually beginning to come into a place that my art is selling.  The inspiration is the same: communicate a moment or scene outdoors to get others out to experience nature.  I dare to say I’ve become an artist, but can’t describe myself now without mentioning “what I do”.  I feels good.  I now sell much of my work through http://www.theartbooth.com, auctioning the paintings in DailyPaintWorks.com as well as to family and friends. Also, I found a great friend, and fellow artist from Columbus, TX that is helping to support my future as an artist (thanks Amanda!!).  In the AT world, this is called a trail angle, a person giving without expectations. She has raised awareness of my art, and found funding for workshops as well as part of the AT trip.  Secondly, I’m now enrolled in a welding certificate program to become both a pipe welder for the oil industry and try my hand at welding-art!

Plans for the next AT trip:

I’ll return to the AT, but as an artist.  I plan on documenting the experiences of the trail with plein air (outdoor) paintings along with the journal writing. To my knowledge this hasn’t been done.  In the week I was on the trail, I found words were so inadequate to capture the moments now pasted in my memory.  Drawing or painting would fill in the gaps to more fully tell the story of the trail.  It’s my way of giving back to the AT Trail community.  The volunteers who maintain the trail, the trail angels who live on a “pay it forward” system and those who’ve experience the deep life-changing quality in their own AT journey.

As for the brain tumor, I’ve now completed a full year of “chemo” and the latest MRI (last Wednesday) showed absolutely no signs of growth since surgery. Whew! Now, I’m living back in Harker Heights with my parents (near the welding school) and fully intend to convert them to neighborhood biking – techno-nerd gardeners.

The Blog from Here:

This blog will morph into getting ready for the AT as an artist. As I prepare, I’ll mostly be posting on backpacking-painting adventures and the ever changing gear improvement.

S’More Update: 6 Month Chemo Report

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S’More News (The void, formerly known as S’More)

It’s been 6 months since the last update, and despite small town Sleepyville life, I’ve been busy! So, this update will be like Cliff Notes, no, like highlights from Cliff Notes for friends and family.

Medical Stuff: To summarize, the past surgery was a success, and in the last post I met my neuro-oncologist, Dr. Loghin to start chemo.  Since then I’ve had three MRI’s to chart the visual progress of reducing the last remnant of S’More (day 1, 3 month, and 6 month MRI).  The last post shows an MRI with a slight visible white line around the margins of the tumor void (link).  This is what we’re hoping to see disappear. This last weekend Loghin and I reviewed the 6-month MRI and there’s almost no change from day 1.  So, there’s no way to know if the chemo is helping.  As an action kind of guy, this new is rather deflating, but positive.  Well, 6 months more of chemo to go…keep the finger crossed for me, will ya?

Experience of chemo: It’s hard to really call this “chemo”.  The sound of “chemo” splashes images of thin, bald patients slumped over holding onto an IV pole, weakly passing down a hospital hallway and hoping this won’t be a day for bone pain or violent nausea.  In my case with the pill Temodar, it’s like deciding to go wild and take the “extra strength” Tylenol rather than just regular.  In fact, I ran 5 miles the first day taking chemo, and rode the 130 mile MS Bike event on the second or third round.  Aside of feeling a bit of tiredness and very slight nausea around month 4 or 5, and a long bout with that bug that had everyone congested around Christmas/New Years, it’s been easy.  The benefit of taking chemo far outweighs the possible risks.

Speech Therapy: Right after surgery, I started speech therapy to help with apraxia (the words are there in my head, the motor movement of my mouth short circuits). Cool speech therapist!  She’s overqualified and happens to love kayaking and mountain biking. Dig it. I had about two and a half months of therapy and reached the point where just talking helps the most.  That, and “ukelele therapy” – learning to sing/play “over the rainbow” on the ukelele. Ha. Shortly after beginning to learn the uke, someone sent me an article reporting that singing is a phenomenal way to solve apraxia.  Who knew.  I’m pumped and ready for “Brown Eyed Girl”.

Work: I now burn calories and practice speech at the MG Feed Mill Distribution Plant about 25 hrs/wk.. sounds like it is. I Hoist 50lb feed bags into 18-wheelers and build mega-massive pectorals (and get paid for it, well sort of). Hello, pectorals? Are you in there?

Ranch Work: There is absolutely squat for mountain biking trails here, so I’m currently building several trail-loops through my uncles forsested property.  I head out with a bow saw and bush loppers to beat back dense brush making tunnels on the weekends.  Seems both the herd of longhorn cattle (trail mates) and the neighbor’s 4-wheeler are now doing a great job of keeping the trail packed down! Very cool, except for the cow patty speed bumps. 1 mile done, about 2-3 to go.

Adventures with Jess: Through friends of family, I met my friend Jessica from Austin.  She happens to have the almost exact tumor type (mixed w/ deletion) in almost the same location and had her first surgery in 2004.  As a fun-fact on the side, the odds of this are somewhat staggering.  As I understand it, this “very rare” tumor happens in less then 1 person per 100,000 (even less for women).  So, imagine two people in a crowd of well over 200,000 meeting each other.  She happens to also like running marathons, cycling, camping trips, and even enjoys climbing. Statistics? So far, our adventures have included Pedernales State Park, rock climbing at Reimers Ranch, Lake Austin kayaking… good times. What an amazing friend!  There are usually paintings from these adventures.

Painting: I’m still in love with acrylics. In fact, it’s quickly becoming a life-style.  I’ve had several requests for painting, I’ve joined the Brenham Fine Arts League and will be hanging art in the Gallery there by May!  I never would have imagined I actually money from something I love so much!   I already established a Facebook page called StephenWilliamsonArt and started a painters blog FunWithAcrylics.  I’m working on a site that will be called TheArtBooth.com.  Eventually, it will be a place for a small community of artist to display their work free of charge.  It’ll be a place to direct people they meet to their artwork and blogs.  On the side, each artist will be encouraged to donate a small portion of their commission to a charity or foundation they are passionate about.  Painting continues to reveal life how I never expected it, almost exactly like backpacking on the Appalachian Trail. It’s a beautiful journey.

Web Design: On the side, I’m taking Ben Hunt’s Pro Web Design: awesome course!  Six months of intense training in everything it takes to get an online business or clientele established.  I definitely see a connection between art and web design in my future!

Well, that was alot, even through it was a “highlight”.  Your continued support for my and my family in all this medical fiasco has been amazing. Thank you!!

7/27/11: S’More Got “Judy Chopped”!

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Although this is a short entry, it’s good news worth sharing. On the 7th I had an “after surgery” MRI so that Dr. Stovall (neurosurgeon) could compare this with the “before surgery” MRI. He placed pre and post surgical MRI slides side by side on the light-box and said these show “fantastic results”! He expected to see about 85-90% of the tumor was extracted with a little remaining tumor along the margins near the motor strip area, but the slides showed about 98-99% was extracted because there wasn’t ANY visible tumor left! He said the last patient with these results still sees him 8 years later in yearly routine check-ups! Plus he reminded me this tumor has the “1p/19q deletion” (genetic marker) showing it’s sensitive to chemotherapy. I’ll have MRIs taken every 3 months during chemo to check for any recurrence, but this is definitely a good starting point and fantastic news!! In light of these results and my recent favorite YouTube video, it only seems fair to say S’More got “Judy Chopped” as seen on the following video: (click on the video)

( http://www.youtube.com/watch?v=x2U-ZQMf56I ).

8/5/11 Update: In the photo the MRI on the right (from 3/7/11) shows there is practically no visible tumor.  On the left (from 8/4/11) the tumor area has shrunk, and there is no increase of any tumor. We’ll watch for disappearing tumor on the margins (the rim around the dark area) as the chemo progresses. 20110805-060618.jpg
News from MD Anderson today is that the chemo pills are a joke compared to “normal chemo”. The doctor said “you’ll fly through this.”. It’s good news.

7/18/11: Diagnosis, Prognosis & Treatment

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7/18/11: Just got out of the doctor’s office, so I want to write down news to my family and friends before I forget.  I had seen an oncologist on 6/24 who wasn’t clear how to treat my case since is it so specialized.  He referred me to MD Anderson Cancer Center.   Today I went there to see Dr. Monica Loghin, a neuro-oncologist who immediately impressed me as smart, to the point and personal.  After reviewing the pathology report prepared at MD Anderson, she gave a slightly different view of S’More.

She explained I have a mixed tumor type “oligodendroglioma and astrocytoma” (which I knew from Austin) and it is high grade, or aggressive (that I didn’t know). There are three levels (grades) for the oligo, three being the worst. “You have a three.” The astrocyoma has four levels, fourth being the worst. “You have a three.” That means if I did nothing the tumor would regrow in 6 months to a year.  That’s pretty fast.   With treatment, there’s a life expectancy of five years.  She then immediately corrected any misconception that I’m the “typical person”.  In fact, they found I have genetic markers indicating the tumor should be responsive to radiation/chemothery and after treatment I should live longer than the “typical” type of patient.  So… now I’ll go to see a radiation specialist to find out if I need radiation, chemotherapy or both (and for how long).  That’s the facts.

As this information sinks into my new reality I don’t feel any different.  I keep waiting for an unknown case of denial to come crashing down. Perhaps after the first wave of chemo/radiation hits me?  Hmm.  That’s another day.  All I know is, today I’m one step farther with knowledge, one step closer to the treatment and my garden just produced a mega-ton of okra.  On top of that I have vacation in Cali with my cuz Andy!  Too much good to be sad.

Just got a call from Dr. Loghin as I type… no radiation because the tumor is too close to important areas.  I’m to have chemo, for probably a year.  ….. waiting…..nope, no crashing denial.   All I can think of is fried okra and California in two days … yes, today was definitely a good day.

6-10-11: Seven Days Post-Op

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For those who follow the blog, this is a quick recap of surgery and post-op news.  It takes about twice as many backspaces for some reason typing, so it’ll be quick.

Night before operation, family was gathered and “Team Steve” assembled at hotel.  Hung out with my bro and shaved head in war style “side-mowak” to get my game face on.  Had a good night sleep and up on Thursday, 8:55 to hospital.  First I met an “EEG” guy to help monitor brainwaves (and who also, coincidentally,  finished the Appalachian Trail not long ago!).  I then met anesthesiologist who assured me once more my foley catheter would be put in after I go to sleep.  I remember I crawled onto the surgery bed;  somewhere they gave me Propofal, and there was  little else until they woke me.  Supposedly I was out for about four hours, I only remember about 30-40 minutes.  I think I remember they said most of the tumor was removed and we were working the margins around where the speech fibers were as well as of the functional motor strip for physical movement of the right side of my body.  There are no nerves in the brain for pain, but I definitely felt pressure as they poked around.   I read aloud from a flip up chart,  “I walked the dog.  It rained at night. …”  about once or twice, which I’m sure assessed the full range of motor speech.  The rest of the time the EEG guy and I talked trail talk, remembering different shelters such as the absolutely frigid “Trey Mountain Shelter”.   He spoke about what it was like in the Smokies and the 100 Mile Wilderness, and I wished I were there at that very moment.  Some day.   Dr. Stovall then asked for a multi-syllable word, and out of nowhere I blurted out, “supercalafragalisticexpealadoches”.  Honestly, I don’t know where that came from.   Kristina, maybe???  Then Dr. Stovall told me a short time later, an area of the margins had speech fibers and we’d simply let part of the tumor stay put.  Wholeheartedly agreed.  I think they hit me with Versed, and I was out.

I stayed in the NICU Thursday through half of Saturday with family staying in shifts as I mostly slept.  The physical therapist and Occupational Therapist said I was clear next day, though I had difficulty with Speech Therapy (as expected).  Dr. Stovall checked in on me the second day, pulled my Jackson Pratt drain (for any drainage) on Saturday, and told me the CT scan post-op looked like they got 85-95% of the tumor, but they can’t be sure until an MRI six weeks out.  There was surprisingly little pain, but I’m glad for the Norco (narcotic) to keep the pain at bay… at first.   It takes a couple of days for the gut to wake up after surgery and on top of that, Norco is the ultimate in constipation.  I transferred to the Neuro Floor Unit Saturday afternoon, and on Sunday night it definitely became an issue.  “OH, you gonna move it.  Be sure of it,”  my nurse said.  Prune Juice, Milk of Magnesia (anti-constipation) and Colace (stool softener) … not budging.  Problem is I can’t put pressure on my brain; it takes brain pressure to “move”.  Not to mention I’d feel and hear an audible squish in my head.  Avoid that.  I’d had it, and resolved to a “grand finale” of “movement”.  Two Milk of Magnesia, two Colace, a Duoculax suppository (it sounds like it is),  two Duoculax pills and 200ml of Magnesium Citrate (used for bowel preps) … I was up from 7:30 pm to 5:30am often not making to my bed before turning around.  My Uncle said around that exact time of “the blowout,” a 100 mile/hr twister hit the ranch an hour East of Austin moving  a solid cedar porch post about 8″, smashing wooden chairs and nearly blowing in the big picture window.  Yes, it was quite an event.  All clear now.

I left the Neuro Unit Tuesday morning happy to be going to my parent’s house.  My swelling is going down, but I still am dealing with  “apraxia” and a little “aphasia” … not to mention about an hour an a half trying to type this.  It weird.  I can see the words in my head mostly, I can type them out somewhat, but the motor movement actually making the mouth move is like a first grade child with a lisp, stuttering and slurring occasionally, simply refusing me.  I’m slowly seeing improvements now 7 days post-op.  Patience.  That being said, this is absolutely nothing to complain about! I am going home to Weimar, TX tomorrow.  I hope to see a garden with the first buds of ripening fruits and veggies, and I look forward to moving forward in my acrylic paintings.

Thank you all for supporting  me, and much more my parents and bro.  A testament to community.  As a side note, thanks Mom for making this actually legible.

A couple more acrylics:

5/16: Less of S’More; Surgery in Sight

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Thanks for the support you’ve given me and my family! I’m doing fine with almost no symptoms, except sometimes having a bit of trouble getting my words out.

5/16: I finally have some news about S’More after today’s appointment with Dr. Stovall. After our first meeting in March, he pulled some serious strings with the CEO of the hosptial to request a trial run with a multimillion dollar MRI software package from GE. This package produces a very accurate rendering of the tumor. In addition he had three types of MRIs ordered and merged into a single “active” 3D map that can be rotated to look at exactly where the tumor is in relation to important brain areas surrounding it. Two years ago this technology didn’t exist and today less than a dozen institutions can afford to use it, so kudo’s to Stovall for making this happen. Just to give an example of how amazing this technology is, in one MRIs they asked me to think of words and it located what part of my brain was doing the thinking; I wiggled my toes, it located another part. In another MRI, it somehow found the fiber tracts that act like information highways connecting two parts of my brain used to understand words and for speech. So, the images above are a result of a LOT of work. The two images show the same thing from two vantage points, one as if you were looking at my face and the other as if you were looking up at my brain from under my chin. In the face-on view, S’More is highlighted in purple, the other view its a dark round void. The fibers that allow me to talk and understand words are highlighted in yellow. The motor strip that lets me move the right side of my body is highlighted in blue. The good news is that neither the motor strip, or the speech fibers are mixed inside the tumor. The bad news is that the speech fibers are wrapped tightly around the outside like a small hand cupping an egg. This means during surgery, it’ll be impossible to remove all of the tumor unless I want to risk losing my ability to communicate. Not gonna happen. So, Stovall thinks he can remove about 80% of tumor leaving a small amount near the fibers. From what I understand he’ll insert the microsuction into the brain and actively see where it is in relation to the 3D brain map. Also, I’ll be awake and constantly talking to keep them alert to any decline in my ability to speak. Sometime during the surgery, they will remove and send out a section of the tumor for lab analysis. Several weeks after the surgery I’ll know what type of tumor I have and how fast it’s growing. This will tell me how aggressive they predict the tumor will be. A grade 1 tumor is slow growing, doesn’t need radiation or chemo; a Grade 5 tumor is, well, not good. From my past lack of symptoms, I’m almost positive mine is a very low grade tumor and hopefully a type that doesn’t advance from Grade 1 to 5 quickly. The tumor will eventually expand, increase in grade and require further treatments to attempt to slow it down. So the harsh truth is, there’s no cure; then the reality is there never any promise of how long any of us will live. Life’s about quality, something I’ve come to more fully appreciate since S’More came into the picture. Ironic.

The confirmed date of the surgery is June 2nd at St. David’s North Austin Medical Center. I expect about 3 to 4 days in the hospital before heading home. The surgery should last from about mid-morning to mid-afternoon.

As I eluded to in my last posting, I’ve now become a more “Western-small town” Steve. The garden now lines my backyard with the fully automated drip irrigation system. The morning routine is to go to the garden half shaven and in house slippers to curse leaf eating slugs and snails. Apparently this is what gardeners do, although I can’t say I’m a “normal” gardener. When I explain I’m growing the world largest variety of 198lb watermelon, pumpkins the size of small children and 12 foot sunflowers among other things (with pride), my fellow gardening neighbor said, “wow” with a look of “why?”. I suppose, as my neighbor waters his garden watching me tend mine (20 feet away), he wonders why I take a photo of a sunflower sprout as often as possible from exactly the same spot. I’d tell him I’m making a video slideshow that will make two months of growth pass by in a minute, but I think that would again evoke that “why?” look, so I just smile, give a country finger wave and shoot. Also seven blueberry plants are planted and in a couple years should be ready for picking, so if you come by for a visit, mid May would be smart. My acrylic painting has really taken off as well. Here’s the last three I’ve done, each one teaching me TONS about nature and how to express it on canvas. My hope of inspiring others to get outdoors through painting is well underway. As it might be sometime before heading back to the Appalachian trial, I may morph this blog temporarily into a journey of acrylic painting and the discovery of nature, or maybe a gardening blog with pictures of dead slugs and giant pumpkins. Maybe both. I could rename it: “It is what it is” and by the power of Google someone will read it, and of those, someone will like it, and of those someone might even remember it. Goal achieved.

3/13 – 3/22: Meeting “S’More”

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Just a quick update per a few requests for the latest in the crazy events.  Seems some have found this adventure extending beyond the trail is worth the read.

3/13 – 3/21:
I guess I’ve been “on the trail” now for about ten days in the new medical/patient oriented journey. It’s weirdly similar in working toward a “goal” like trail life, only with a goal of surgery. My head is still in a cloud (anti-epileptics) and every three to five days I wander into an doctor’s office appointment to restock on information supplies, receipts and insurance policies before heading back out with a 30lb pack paper-weight. Its not always easy, but I’ve met people on the way who definitely deserve a trail name. Dr. Stovall is about as good and genuine a surgeon I could hope for. Down to earth, hopeful and as the word goes extremely skilled. We had a good face to face visit the other day and we clearly feel the same way about what we hope for from surgery.  Glad he’s taking the lead position. Perhaps even more deservedly, my insurance broker has proven an invaluable “counselor” to sometimes desperate ears.

3/21:
Back in Austin today and met the assisting neurosurgeon and neurologist for the surgery. This neurosurgeon is one of most technically advanced, at least in knowledge, in the nation.  Wicked smart. I definitely want him there when they have the micro suction on my brain helping to decipher what’s “good” and “bad”. He said “when I’m looking at the brain, nothing looks different, so I’m going to fix a do-nut like magnet to your forehead that connects to an MRI image and the computer screen highlights “tumor/no tumor”.  He’ll also have an MRI that shows a road map of active fibers around the tumor like white streaks.  Please sir, take the MRI. Take two.  Its on me. It’s a very real judgment call as they literally suck out tissue wanting to take out as much as possible, but knowing it’s also removing my ability to speak, move my limbs and my hope for a quality lifestyle. I explained I’d rather have five “good” years than ten bad. They agree.

It’s been kind of funny in a sick way how the doctor sessions have started.  It’s kind of a trend I see. Right before seeing me they go view the MRI, then come talk to me about it. First they lay their eyes on me with the assessing “how much does he know?” — a two-second expression of slight unease type of stare followed by a shift to just say it … ,”well, yeah it’s a complicated one and that’s bad.”.  Another said, “It’s fairly large and it’s just in a bad spot”.  The best one though.. He holds his hands in a bear claw like fashion as if holding the very tumor in thin air before me about to expound in medical unfamiliarity, a pause, then the searching for words,” it’s just bad.”. At the last visit today, I battled between respectful maturity and snickering before he started. In the last doctor’s defense, he was surprising positive from the get go. I did get to SEE this infamous MRI image finally today. I’m just gonna say I have a “man-tumor”. Couldn’t get an iPhone pic of it because the doc was talking, but if you can imagine a top view brain scan image like on “Scrubs” or “Grey’s Anatomy”, it would look like somebody stuck a large, wrinkled white marshmallow just inside and in front of the left ear skull bone extending almost all the way to the center line of the brain where it meets a dark gray “normal” band and then the thin light center line. Nothing pushed around or distorted, just there, and it looked like a perfect prepared s’more: grahams, chocolate and mallow. It’s sick, I know, but that’s what you get from a backpacker/hiker. Thus “S’More” is named.

3/22:
Life now is going to take some creative ingenuity. Driving is out since the tumor rests right next to the foot-pedal muscle nerve. One bad vibe from “S’more” and I could cream a pedestrian. So in the spirit of the trail life, tomorrow is a new day and I’ve now concocting a new “Western, small-town” version of me and my cranial companion (or what is left of em in a month or so). I’m moving to Weimar, TX, a small, lazy town almost smack in the middle of Houston and Austin on the map. Everything is accessible by bike and I could possibly help out as an RN at the local hospital. Hey Andy, looks like you won’t be the only one “gone green” biking to work! No doubt I’ll also be doing a lot of ranch work helping my uncle nearby with longhorns, horses and a small vineyard. In the spirit of all this, I went to Goodwill today and bought a bunch of “ranch clothes” to blend a bit and try and be smart about all the sun.  I’d rather not become a leatherneck, just mimic one. Close enough. In the spirit of “going green” and remembering conversations with LaLa on the trail, I’m planning a garden complete with a squash and maybe a turnip (although I have no idea what to do with a turnip). I might even attempt growing chickpeas and making humus. Hey LaLa, that’s your prompt to advise..?? I’ll be ordering four huge Tiftblue Rabbiteye Blueberry plants and pulling on a rototiller within a couple weeks across the front yard. Oh, and a rutabaga. I’ll need to Google that one too, but that sounds really country. Of course I’ll have to irrigate the garden with a solar-powered irrigating automated drip system, but as that borders on techno-nerd, I’ll tuck it away behind a rusted country looking hand pump. On weekends, I’m outfitting myself with a DIY artist/camping pack to take up cycling-acrylic painting.  Head 30-50 miles out, camp/paint somewhere, then cycle back. Yes, it will be YouTubed and FaceBooked.

–Trance

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