Monday, April 22, 2013

Techno Speed Metal - A blog in partial tribute of Peter Jackson, you'll maybe see why...


So 2012 ended as a cliff-hanger and 2013 started with a... "meh."

Fresh off the news that for the first time in two years there was something of possible concern that showed up, I was given a shorter window between check-ups and in mid-January, we were back at MD Anderson. As you may recall, my initial diagnosis had been synovial sarcoma. This was nasty in that it carried high risk of metastasizing and a high recurrence rate. Although by the time of surgery they were leaning toward low grade sarcoma, the exact classification was never really pinpointed. All that to say, finding anything was a potentially very high concern and I was prepared for the worst.

*Not* the ultrasound room...
The tests included the same ultrasound and x-rays I've been getting for the past two years and they did again find the mass along my nerves. It took some work though. It was only visible from certain angles and it appeared to move around a bit as they pressed against the palm in different ways to see what there was to see. The thought of biopsy came up again but due to it's tiny and mobile nature, stabbing me medically was mercifully ruled out. I helpfully noted that it would probably not be super viable as I squirm and shake already without having a needle in a nerve center. Stupid needles...
I may have jumped ahead too much... 
Just in case you're not familiar with these procedures, what normally happens is that you are escorted from the waiting room down several long corridors to a locker and changing area. Depending on what you're getting sonically imaged, you either strip down to you skivvies or, in my case, just take off your top and put on a hospital gown. You then meander (or get escorted) into the procedure room. They're typically nice and chill with minimal lighting except for a few canister lights in the ceiling. It feels very dramatic. So dramatic that at times I feel like perhaps acting as a coma patient having a monologe with the light from heaven or myself or something. I don't, but it'd work on camera, I'm telling you!

Anyhow, with the room being chilly and you being in some form of undress, they give you a lovely warmed blanket and have you lay on the gurney next to the sonogram machine. You get situated and you wait. Like I mentioned, the room is very dramatic and while I have been known to play Angry Birds or Words With Friends while waiting, other times I've just laid there and thought dramatic things. Things like, "will I remember all this to blog about?" and "Is this going to be the moment that I hear the bad news  that starts another life-altering chapter of treatment?" Seriously, these rooms are basically ready for TV, "come to Jesus" sets.

After the sonogram technician finishes up in adjoining room(s) and comes into yours, it's game on. They say hello, make some fun small talk, and then pick a part of you to start on. Some start on my hand, some my armpit, I'm sure it doesn't matter. Often times I find myself in a rather awkward position like if you were pillow talking on your side with an arm propping up your head. It feels rather girly but it gets the job done. In any case, it offers a view of the screen while they're scanning you and frankly it's weird looking. In any case, it usually doesn't make a whole lot of sense to me but they know what they're looking for and use the keys and dials on the machine to type in notes and draw in markers of things they're observing. At some point during this, if we'd been talking, it gets quieter. Partially because I can't make sense of what I'm seeing and partially because I want them to be able to fully devote their attention to figuring out accurately what they somehow know what to look for. 

After seeing what they need to see, they usually pop out of the room to review with a higher level doctor who oversees these things. Due to my possible neuroma lump, I've been seeing that guy a lot. I can't remember the Doctor's name because I'm a horrible person, but he's a very nice fellow whom I believe is either Indian or Pakistani in decent. In any case, on this mid-January morning, he came in again and informed me that the mass didn't appear to have changed in size and that while biopsy was still an option, he felt that continued observation was probably still the best way to go for now. He leaves, the sono-tech says I'm good to go, and I re-dress and head out to my x-rays a happy man.

That's my typical sonogram experience in a large nutshell. 

X-rays, were a breeze and Dr Lewis' appointment also confirmed that continued observation would work unless something came up in the form of weird lumps or pain. 

So that was mid-January's appointment.

The months roll by, Brea and I are travelling and working and generally being stressed and busy... and start feeling some pains in and around my hand, arm, and wrist. I think it first really kicked in when I was breaking down my drum set after a Sunday morning. One of the wing nuts on a cymbal stand slipped in my hand while I was loosening it and it pressed into my palm creating a strong bruise-like feeling. Super. 

No sooner had I learned that there was some nerve scar tissue potentially growing and I just aggravated the area. This triggered thoughts of how the doctors warned about how surgery can let loose cancer cells and spread and considering that the thing in my hand was "probably harmless neuroma" and now it was hurting, a little alarm was going off. It wasn't crippling though, so I played it out and kept rolling.   A month or two later and I still seemed to have some residual feeling of pain or tingles along my palm, fingers, wrist, and forearm. Eventually those feelings made there way out of my mouth in front of my wife and you can guess what that led to... "Call the doctor!" 

Fine. I'll call the dang doctor...
After leaving a voicemail, Gina (one of Dr Lewis' crew) replied and said that they could set up an MRI to double check more thoroughly. It wasn't urgent enough to warrant a quicker appointment date but they were able to set it up the day before my previously-scheduled regular checkup. Done deal, way better than needle biopsies... except for the fact that MRIs involve getting needled twice

Whatever, for some reason I missed the MRI, I wanted back in.
The day arrived and I headed in to get the first jab of the afternoon, blood work. I got called into a sassy and jolly lady's specimen-collecting station. I laid back in the chair and gave her my arm. She started getting thing prepped and started talking about a great movie she'd just seen. Apparently it was called "Dirty Teacher" and was about an illicit student-teacher relationship. She wasn't sure if it was based on a true story or not and so I asked if it was Mary K. LeTourneau. "Naw, she tried to kill him!" she said. "Oh," I replied, "Mary K just had the student's baby... in jail". "Not the same story..." "Nope."
Anyhow, aside from the discussion of apparently rampant "hot for teacher" cases gone wrong in the country, my nurse had skillfully and quickly drawn my blood without me barely noticing. "Boy, you' sassy" she commented. "I can't help it," I said with a shrug. "It's in your blood," she continued. "You should know, you're looking at it," I said with a wry smile. She laughed and told me to get out of her room so I did. 

Blood work out of the way, it was off to the MRI. As it turns out, it was here that I was able to start getting caught up on blogs from last year. While doing that I encountered a grumpy fellow patient who may hav been about the same age but with a long and full dark beard and matching hair. Upon checking in they'd mentioned that they were running about and hour and a half behind so I was getting comfortable while he was getting impatient. There's always two ways you can go with delays and one just wears you out...
That aside, a nurse called me up, asked some questions and then went ahead and set up my IV preemptively. This was great for workflow for them, not so great for productivity for me. They stick it in the inside of your elbow and so it keeps you from  bending it too much. It's a little unsettling thinking that if you do something wrong you might poke a hole out the back of your vein. This might not be that much an issue but since my left had was going in, the IV went in my right arm.... leaving me with a non-dominant hand with less fingers to do most all the work for the next hour or two. It was awkward, but the real awkwardness was yet to come.

I decided it'd be fun to take a picture of my IV for this blog or stock or whatever. It turns out that it's not that easy to take selfies with a non-dominant, digit-deficient hand using a right-hand-oriented DSLR camera. After about 2 minutes of fumbling and barely not dropping my camera, I got a shot off. That was enough of that. I reverted to the smartphone camera and went about my one-handed pecking at the laptop. In a shorter amount of time than I anticipated, I was called in to the prep area and given scrubs but allowed to keep my shirt on since it had no metal in it. I wound up sitting in the little prep room for about 20 minutes before deciding I'd better take care of some business (if you know what I mean) before being stuck for an hour in the MRI.

Now I've debated whether or not to relate this following part but I've got the TMI disease and so if you read the next few paragraphs... you might wish you hadn't. 

I got up out of my chair, keeping my IV arm straight, and headed out down the hall to the restroom. I got in, got the scrubs down and got comfortable. Business was conducted. Then it hit me.

I'm not sure if it was when I had to reach over my body with my left to reach the TP dispenser on the wall, or when I'd torn off a section and it was just there in my hand that I froze. "Crap (pun not intended),  I'm not an ambi-wiper..."

It's a stark and alarming feeling when you're caught with your pants down and one arm immobilized by your side. I twisted one way, didn't feel right, twisted the other, still not right... "How the heck..." I know it's possible, how in the world is this just... not... working. I glanced up for a moment at the pull string you tug to get assistance. Mustering all my strength and intellect,  and muttering a quick prayer of "Lord help me...", I drew on long-dormant Twister skills and began the mission. 

You don't think about these things with the near-reflex, benign tasks that we do thousands of times in our lives. If you've never had a reason to change or challenge that motion, it becomes more physical than mental. I can only imagine (although my imagination is pretty capable) what that would be like for other more fully affected amputees or even people who have immobilizing casts... You just. don't. think about it...

It ended much better than I'd feared in those first panicked moments. It helps to be flexible and it helps to be methodical and repetitive, just in case...
So that day, I became like Derek Zoolander, who himself struggled with not being an ambi-turner (it's close enough, just run with it). In that hour of near despair, the struggle was won and it turned into a moment of victory. Clean and relieved, hands extra-thoroughly scrubbed just in case, I returned to my prep room a new man. 

It was just a few more minutes after that when Brea was able to join me as I continued to wait. I'm not entirely sure she was quite as impressed with my story of adversity overcome but I got kisses anyways so you'll not hear me complain. 

Eventually the MRI machine was freed up and my turn had come. From previous experience I knew that it might be while and that I needed to find a comfortable position. I forgot how impossible that was. 

If you've gotten your head or leg or abdomen checked out, I imagine it's much simpler, you just have to lay on your back and stay still. Easy enough if not claustrophobia-inducing...

At least for my situation, they always have me just stick my arm up and out in a superman sort of pose but have me on my side. Imagine sitting at a school desk raising your arm up to ask or answer a question, the flip that on it's side. They then position the hand in a hard plastic open-ended basket of sorts and immobilize it with cloths and straps. "Now don't move," the technician says. I feel pretty good and the padded board starts inserting me into the machine.
Ca-lick CLICK CLICK
ti-TOK ti-TOK ti-TOK
WAAAAAHHH WAAAAAHHH WAAAAAHHHHH

It has begun.

My head is just inside the tube on a pillow with the right side of my face up. The clicking and ticking continue. It is loud. The combinations of amplified sound effects include hollow, rich clicks, tight wooden-like ones, and some sections of noises that are not all that different from a what you might hear as a bank vault alarm in the movies or even the computerized machine gun sound effects on toy guns back in the day ('80's & '90's). It comes in sets and waves. You close your eyes and breathe as a stead stream of wind comes down the tunnel at you. Several cycles in, I became more and more aware that it was much louder than I'd remembered. The alarm-like sounds evoked movie scenes where the facility was about to self-destruct in 3 minutes 49 seconds. It was like having my head underneath a car hood with the alarm going off. That would break and then came the synthesized machine gun fire sounds. Those passes were longer and it was probably then that the arm started to tingle and my ribs started hating me. "Hold still, you don't want to jack up this diagnostic... " I said to myself. I had to flex my chest and breathe deliberately to try and keep blood flowing and hopefully alleviate this lack of movement I was captive to... when will this end? Keep calm and carry on. There's not much you can do in there. Brea had asked if they let you listen to music in there, I was wishing they did. Earplugs... they forgot to give me earplugs. 

Now they do give you a call button when you're positioned and ready to begin, but I was trying to power through and didn't use it. Several false stops later, with the agony of immobilized and sleeping arm becoming more pressing and the act of breathing seeming more labored, they techs paused to come in and administer the contrast via that IV I'd been set up with. 

First things first, I asked if I could move. "Not your hand" was the reply. Ok cool. I rotated my body and shoulder. It was something. "By the way... do you happen to have earplugs I could use?" 

It was clear my MRI tech lady was taken my surprise, not because the request was unusual, but because  she'd just forgotten. "Oh my goodness I'm so sorry!" she said, hurriedly grabbing earplugs and then inserting them for me. "Quite alright" I assured her, "I was thinking it was a lot louder than I'd remembered."

The contrast was pushed and I was sent back in to the tube. Earplugs make it much better!
This second round I went back to trying to picture what the sounds sounded like when a slightly new pattern emerged. It was like techno speed metal... a fast combo of kick and tinny snare sounding like it was played on a trash can and run through an audio compresser. It flipped back to the machine gun pattern, some clicks, then the speed metal and then more alarm bursts and then... well frankly I lost track. But it was over much more quickly and I was relieved to feel the board ejecting me back out. 

Why on earth did I want an MRI again?

Perhaps it was the challenge of finding a way to do it more painlessly... definitely that, and wanting a more detailed picture of my innards... yeah, that too.

The easy stuff was the next day, depending on the results...

I could draw this out more but let's cut to the chase.
Ultrasound the next morning - Went just like the others. No noticeable growth. In fact, the ultrasound doc said that although MRIs weren't his specialty, he'd scanned them and didn't see anything worrisome.
X-ray - Golden.
Appointment with Dr Lewis - Cleared with continued monitoring. The pain is likely more due to me being old in combination with cold, and too much typing on the computer with a surgically altered hand that is perhaps a little more susceptible to that stuff. The thing in my hand is probably still just neuroma and nothing to worry about. 

Yay!*

*in so much as you can ever let your hair down and celebrate a lack of immediate and impending doom once cancer has been in the picture.

That's the story folks. It looked like there was a chance of bad stuff happening again but we got a reprieve for the foreseeable future! All in all... another day in the life of an Eric with a C whose C in once sense is past tense. You're stuck with me... sorry. :)  



Thursday, April 18, 2013

Closing out 2012

I don't know why but it seemed fitting that on the last appointment of 2012 there was a slight hiccup to the normal "all clear" with a small bit of something showing up in the ultrasound of my palm near some nerves.

For a few minutes there they were talking about biopsy right then and there with a needle. As the potential concern was right around the most sensitive part of my hand I was not particularly excited.
Luckily they relented and consulted with my primary physician, deciding to wait and monitor it. Upon reaching the actual meeting with my doctor later, she recommended continued observation with a smaller period between appointments at first to make sure it wasn't growing rapidly (if at all). Still somewhat unsettling, it was better than jabbing a needle in my palm.

I was asked if there was any tenderness or pain in the area, of which, aside from what I'd consider normal bruises and natural side effects from a bunch of nerves that were separated in the area, there was not. Dr Lewis related that what they were seeing was probably a neuroma which is common after surgeries. An appointment was set up for mid January and life went on.

So that was the end of 2012.

Needless to say, this revelation prompted much consideration of the possibilities that lay ahead, both positive and awful. Had the probably inevitable happened already? What would they chop off next? Would this be the time I get a taste of chemo or radiation? Of course it could be nothing... or it could be something that just heals miraculously. Who's to say what could happen?

Uncertainty is a killer in its own right, if you let it be. There were (and are) so many things that demanded commitments and answers, yet there was this potential wrench in the middle of things that could foil any and all future plans I was working toward. That is perhaps the most challenging part. Not  knowing, not wanting to panic, and not wanting to take it too lightly either. With a tough year for my business wrapping up and debts needing to be paid, I needed to find a way to right the ship, potentially take a second job, or just find a new primary one. But if cancer was back, if surgery was coming up, new employers would probably take a pass even they were interested at all. What could I actually do?

I'm sure these sorts of issues are exactly what many people with illness or injury face so I'm not under any illusion that this was a special situation. That said, it seemed a little early to have to start considering  wellfare or disability. Frankly I'd rather be more useful for a short period of time than a burden for years to come. Perhaps that's my youth talking. but considering where I was at being pretty fully able, the prospects of further disability were not great-looking. But there was (and is) hope. Regardless of how things played out, things would ultimately (in the long run) be alright.

A song by the band Needtobreathe called "More Time" came up and has the following resonating bridge:



Needtobreathe - More Time
Yeah, the road gets harder
But it's not much farther
It's gonna be alright
You know that it ain't easy
Please believe me
It's gonna be alright



Then there was also a song by LeCrae that had some parts that stuck in my head too...
Change off the album "rebel" that basically talks about that drive and need to change when you see how broken things are around you and within.

These two songs really painted a the battle of desires that was going on. ...at least the more productive and progressive ones.


The tumult and uncertainty, as mentioned before, is a killer.
So quotes like this come in quite handy:
Even though I walk through the valley of the shadow of death,I fear no evil, for You are with me;Your rod and Your staff, they comfort me. 

Just knowing that the world as you know it is temporary and that your trust is in its Creator is a huge combatant of getting lost in the muck. Trying to plan your way out of circumstances you can't control can be an exercise, but it's not the end game.

So there was 2012 wrapping up. Eric with a C?



Tuesday, April 16, 2013

What's a cancer patient's favorite gate number at the airport?

Just say it out loud and quickly if you don't get it immediately... :)

It's B9.
...'cause you like hearing whatever they thought they saw is benign... 
Oh it's funny, just laugh.

Your compliance is much appreciated. :)

Conflicted

Within this past week or two, along with the insane events of Black Friday, Cyber Monday, and general holiday sales fliers, I've gotten a number of letters from charities of various sorts. Some are the standards; the local food bank, the Salvation Army, and the Red Cross. Others are from missions organizations, child sponsorship charities, and cancer-related organizations. There are a ton of people in need.

I think it was when I got a letter from the MD Anderson Cancer Research Center alongside some of the other requests for aid that a thought process got triggered. Should I donate more to an organization that hopefully has saved my life or should I donate to organizations that assist other needs? How in the world do we prioritize and choose between all the worthy needs out there? Is it ok that I dropped thousands of dollars (thankfully many more were covered by insurance) to save my suburban behind when that amount of money could have helped save numerous lives in an entire village in some place in Haiti or Africa? I don't feel qualified to make those kinds of decisions. There are 80 million photographers out there with a new soccer mom or college dropout (me) adding to the number of semi-pro or start-ups every day. Maybe that money that went to rooting out my cancer could have helped a group of people in mortal need and my eventual demise would help diminish the unemployment crises slightly. I don't know.

But who am I, or anyone else for that matter, to judge?

Having just wrapped up Movember which focuses on men's health (with a cancer-prevention focus), this subject was definitely starting to brew in my mind. I know plenty of people affected by cancer, some have won the battle, some lost it. I can see that there is a need to fight for both prevention and the cure; there are families that are dependent on those that pass and they have needs there, emotional and physical. It's just difficult to discern the value system, at least through the financial lens.

I had an emergency room visit a number of years back that was not much more than some scans and blood work. The bill from that non-life-threatening visit could have sponsored 3 kids for an entire year. It's kind of amazing really. (There was an article in Time about just that which really explores the craziness there.) One one hand it seems like a no-brainer that funding an organization that  could save 3 or more lives would be better than just blowing it on one life's healthcare. It's easy to start thinking that all these kids, or those labeled "third-world" people, should be our number one priority.

On the other hand, they're human too, flawed as we are. We are equal aren't we? Aren't some destitute because they choose defeatism, succumb to foolish practices, and bend to corruption? Why not take advantage of the available care? We're in a situation where our income is higher but so are our costs. Is it better to be making $60,000 a year but have debt and yearly expenses that eclipse that or to be making $3,000 a year but have no debt and live off the land? To me it seems hard to say, and although there are certainly perks to "making it" within the higher income society, the odds of doing so seem to be sinking these days. But that is beside the point, what determines the value of a life, and how should we be going about making those determinations?

Of course some of those in need aren't there by choice or decision. They may have just been caught up in the mess of their society, don't know anything else, or just don't have the energy to fight. Ultimately they need help and we're in position to do something, to some degree. So how does helping ourselves fit in? Should we be more concerned one way or another? How can we be impartial and fair?

So it's difficult to discern things both through the financial lens and the moral one. The globalization of our lives has opened up possibilities to help far and wide but also deeply complicated our perceived responsibilities for ourselves and others. Before the amazing ease of communication across mountains and oceans, we didn't know of most other's problems and couldn't do much about it most of the time anyway. Now we hear and see needs worldwide and have means to actually address them...if there weren't so many...

Knowing about needs, and providing for them, has opened up the floodgates of aid requests in three shades; the real, the questionable, and the fraudulent. Unfortunate as it is, it is only human nature to digress to gaming the system. There have been scammers that take donations for real causes, there have been organizations that exist as much to fund themselves as serve those they raise funds for, and there have been many recipients of aid that decide to rely solely on that aid as a permanent crutch.

So while there is much good that has come and does come from charitable donations and focusing on helping those we deem "in need," there is also downside to overemphasis and poor execution of that aid.

So where does that leave the decisions about the valuation of lives? Where does that leave us in the decisions about where to give and spend for our selves or others? How are we to prioritize when the ideal is to love one another like we love ourself?

Perhaps it's about recognizing that throwing money at a problem isn't the answer. Money is needed; but more than that, it is human interaction, knowledge, and the passing on of wisdom that really makes a difference. Even so, the money comes back into the mix, although it ideally wouldn't be the factor that it is.

Donation requests fill a filing box in our home. Some are responded to, and others not. Where can we direct our resources to do the most good? Is there cause more worthy than others, a place? Should I donate money to the hospital that treated my Sarcoma? Is the money spent on that care enough? Is it our burden or another's? Does cancer treatment and prevention deserve a higher priority than feeding starving kids or freeing abused women?

As I write this, having started this post over a year ago, I'm sitting in an MRI waiting area at MD Anderson.  What is the next step in this journey? The questions are still there with all the possibilities still looming. There is so much potential laying unrealized in a variety of paths. What if...





The following is a list of charitable organizations in no particular order. They all have merits and really it's just a matter of showing just a small spattering of charities that help others in a variety of ways and levels of efficiency. Click a link or two, see where it takes you...
http://www.redcross.org/
https://www.salvationarmyusa.org/
https://www.themochaclub.org
http://www.worldvision.org/
http://www.childfund.org/
http://www.sil.org/
http://www.lls.org/
http://www.mdanderson.org
http://www.livestrong.com/
http://thearchibaldproject.com/
http://www.marchofdimes.com
http://www.komen.org
http://www.unicefusa.org
http://www.habitat.org/