Thursday, November 15, 2012


Odd term, normally something we celebrate because we are happy about the event.  A way of remembering something so amazing or so important to us that we feel an annual remembrance of that event will strengthen our bound to it in our memory (our collective societal memory).

But that isn't always the case is it, sometimes we remember horrible.. horrific.. degraded.. and even evil things for some unknown reason we as a race (and I mean the human race as a whole) seem to put this significance on the annual event.  Personally I am not sure what to do with mine.  1 year ago, I was 100% sure I had cancer, I was still waiting for the radiologist and the MRI tech's go at it... but in my mind it was a done deal.  At the time I wasn't even sad about it, probably out of shock but, I just felt "well this is now something that's happened to me and I need to deal with it."".  Oddly enough in the room with the doctor, when he said "you have cancer" it wasn't even that hard to hear I had so prepared my self for it .. he could as easily had said... "Eh you seem to have a spot on your shirt" I wouldn't have reacted any differently. My brain just went into "ok what do we do next? down stairs for blood work then schedule the surgery ... ok thank you"

From that point one it was a series of tests, and operations, and exams, and surgeries.  It was all mechanical and scientific really, we know you have X... we know if we do 1, 2, 3, 4, 5.. that you have a ZZ% chance of being alright so lets do that. Then once those are done, lets look up in our little chart (NCCN if anyone is counting) and see what the next step is and do that..all with nice little flow graphs and percentages and steps. It was so methodical and poetic in its practice that you sort of lose yourself in the whole process.  Honestly, at least of me, its something you welcome.  Its so hard to deal with.. so hard to wrap your head around "I am dying, this thing is killing me" that its easier to just say... lets do another test, another surgery, another treatment... we can deal with the "bad" stuff later. In fact while writing this, its the first time I have cried.. I mean really deeply cried in longer than I can remember.  Its just not something you have time for when you are dealing with all of this stuff. Then those later's turn into even later because you have more to do.. now there is chemo........ MAN is that a trial of fire and pain.. it knocks you down.. it makes you feel horrible.. worse than you could even imagine(which as a logical person i realize sounds like a ridiculous claim to make but its the best way to describe it), it is (next to the RPLND) the worse experience I have ever had in my life... and honestly I think it trumps the RPLND because it was MONTHS long.. and it just lingered there ... death slowly consuming you. It's what I image it must feel like to slowly wither away. Remember that during this whole process you don't  know if you are actually getting any better.  Its quite possible the bastard of a cancer you have in you has decided that it doesn't want to have chemo have any effect on it and you are going to have to cut it out or worse try something even more potent to see if you can bring it to its knees. What was so paradoxical about it to me as a patience seeking curative modern medicine.... is something to bring me out of the horrible place that I found myself was that we go in there every day.. fully aware of the toxins and measured death we are going to endure, the horrible sludge, filth we are going to pump through our own body (a body that all in all has been with us for so many years serving us well and we probably have put some effort into maintaining and trying to live/eat/be "good" people) and we sit down and take it.  We take the pain, the torment, the side effects. I had more than my share, my tongue tearing itself apart with ulcers and tastes I can't even describe, my ears screaming at me even when it was silent outside.  My hands burning like fire and pins regardless of the temperature outside, and my whole internals writhing and aching like I was swallowing rusty lobster traps full of mud and filth... knowing that honestly this might be how it ends.  This might be what we do with the end of our lives. There is this quiet acknowledgement between everyone in the chemo ward when we look at each other.. we all understand exactly what's happening to us.. and what's happening to the person staring back and us and we accept it... its really the strongest sense of belonging and community I have ever known.  I have never felt more accepted, more "at home" with everyone around me.. than I did those days fighting off death in the chemo ward. There is no pre-tense.. no posturing or anything else.. you are all there simply to survive another day and everyone you see is another soul that someone was kind enough to grace you with knowing before what could be the end.  You do this, you take it, you endure because there is the hope... a promise that maybe we will be better in the end. Everyone's"maybe" is different, I was lucky and my maybe was strong and very optimistic and gave me ALOT to hold onto.  I know there were times, especially in round three that it was hard to even consider the end was near but I tried to do my best to see that someday it would end... but I know there are others sitting there with just as much hurt and death and pain, with no where near as much hope to hold onto as I had... and for them I have nothing but respect for and the strongest people I have ever seen resided in those halls.

My premeds did many things for me during chemo, the least of which was pull me back from the grave of torment I had been mearly hours before... one of the side effects was that the benadryl they gave me made my knees ache.  I had a bad reaction to one of my chemo meds, the first day I lit up like a lobster and nearly stopped breathing before the nurses took to their task and saved me. That could have been the end of my story, how fragile our lives are.... illustrated in a single moment.  After that, they gave me benadryl before my Etoposide treatment.  Turns out it wasn't the chemo med I was allergic to, but simply its solvent which always amused me... the toxic chemicals my body was fine with but... that pesky water it was disolved in... well that just wasn't going to be up to wade's standards!  Anyway, after the premeds this allowed my body to absorb this horrible drug, but it also made my knees ache badly.  In all my time in the chemo ward, I was the only person I ever saw walking around and apparently it was very uncommon to see a chemo patient... lugging their chemo meds around walking through the chemo ward every day.  The aching made it really hard to stand still or even sit in my chair so I would walk around (even later when I could hardly stand if i wasn't sleeping I was walking around) saying hi to my fellow endures of the pain of chemo.  It was an interesting experience because the nurses weren't used to someone moving around like me, I was an oddity.. so it led to lots of fun conversations and I got to know my surroundings.  The numbers of tiles on the floor (189) the number of steps it took per round ~250.. the number of rooms where you could hear the TV blaring some random old show where the patient obviously didn't care and they were just passed out hoping the zofram and the other premeds would let them sleep.  Sleep was, unfortunately very hard to come by at home with all the side effects of the chemo. Even trivial things like where the "spots of elevation" where in the floor and what tiles/sides they were on.. these were all things I memorized so I wouldn't fall and so I could have something to occupy my mind distracting it from what was really happening.

After all of that, and finally getting my tumor markers going down and being lucky enough to not get the worst of the side effects (though I certainly had my share) that was really only the start of my journey.  After my CT scans I found out I needed to have an RPLD due to some residual masses (you can look back at my blog about what all that entailed)  luckily I stuck to my guns and my insurance came through ... and I got the best surgeon in the world to perform it even though I did have to fly to Indiania.  It cost me more than I had, but family and my amazing work friends stepped up and really wow'ed me with a amazingly generous donation that made it all possible.  Aside from the chemo, I would say it was one of the hardest things I have ever had to endure, the pain and the constant discomfort of those first half dozen days were something I couldn't describe. Every motion, every movement was met with pain I had never even began to realize was possible.  Needless to say I was anxiously awaiting my little "clicker" for the pain meds each time it turned green I was RIGHT ON TOP of that!  I had wonderful nurses, great drugs, and my wife by my side every step of the way. The thing that stands out among all the pain and the discomfort and the embarrassment of being in the state i was during that time.... was the few minutes when Dr. Foster came in to tell me they found no active cancer cells and it was all Necrosis or Teratoma and I was ALL CLEAR! The plan ride home was nearly nothing thanks to some nicely placed pain pills before the trip (though getting on hurt REALLY bad).  Getting home sucked, every bump in the road was horrible, and once I was home doing the simplest of things sucked. But over time I slowly got back my mobility, and got back to work.. and kinda returned to normal  For all of those people reading this coming out of chemo or supporting someone coming out of chemo let me say that normal is hard to gauge at first.  Our minds, our ability to just functional normally after everything we have been through is something that takes alot of effort and focus so forgive us if we are snappy or tired or seem "off" I promise you we are trying our best to become normal again.  Every few weeks I get blood drawn, I get a CT scan to check on the state of my little invaders and so far everyone is behaving.  I am 100% clear, all my markers are great and I am starting to feel "normal" again.  We are over 8 months from the last chemo treatment and 6 months from Dr Fosters official "you are cancer free" in Indiana but we have MUCH more to go!  I would be remiss if I didn't say every blood work, every scan brings back that dread of death and "the end"... I am hoping over time that will subside but its something we all deal with as survivors of this horrible thing.

That's an interesting word "normal" I was recently having issues with a lingering pain in my side and when my Dr wanted me to describe the level 1-10 I was at a loss. See I have a very vivid picture now of what 9/10 was.. some of my worst chemo days mixed in with a few of those moments where I regained consciousness after my RPLND where the pain wasn't even a describable thing so for me.. that's "10" then... I have in my mind a 1 like.. oh dern I hit my elbow on the counter or ... urgh knocked my knee on the table as a went by it... you see the vast sea of area separating 1 and 10 is hard to quantify... and this speaks to my new normal. As much as I try to be normal, and I try and put that "stuff" in my past it will forever be apart of me.  It shaped me and it is now part of who I am, how I view this world so when some random nurse asks me.. "What's your pain level..." and I say its a 3. (not logarithmic  linear of course I don't want to confuse people) I don't think they fully grasp what the 3 means :-P

Anyway, I am going to try my best to live up my Cancerversary..try and make it a day of joy and a day of happiness... quite a stark contrast to feeling I felt.. waiting for my doctor to come in and tell me "you have cancer"


  1. What a remarkable post. You've experienced things that I couldn't possibly imagine. No doubt this has had an influence on you such that you now have plenty of things to teach ME about life (not that I did a very good job a decade or two ago). I'm in awe (and horrified) about the journey you've been through, and can only hope that moving forward from here you have little adversity to compare. When you get a chance come see me sometime in Austin, or when you get a chance on weekends in Galveston.

  2. Hi there, I know this quite a few months after your last post and I hope that you're still doing really well! I was just diagnosed with stage II tc mixed in September and finished my chemo in December. The doctors told me my affected lymph node did shrink quite significantly, just not enough to avoid the RPLND. I've been scowering the net for an honest and relatable experience. While I know every individual experience is different, it helps reading someone's experience and yours has been the best by far. I'm extremely scared of the surgery coming up but I understand that it has to be done. I think the best part of your post was the sense of what is now "normal" Every day I struggle to explain to my family how difficult it is to getting back to what I used to be is for me, but this post describes exactly what I feel and I will share it with them. Thank you so much for the brave and courageous posts you've put up, you've given me more hope and more courage than I had before. Is there any advice you would give to someone like me waiting for the RPLND? I would really appreciate it, perhaps if there's any specific questions I should be asking the surgeons prior to surgery? You can shoot me an email at I'd really appreciate it. Thanks again and I pray you continue to be clear of cancer and getting stronger and better every day :)

  3. Wow. I appreciate you sharing your experience. I'm post 3x bep and two weeks from rplnd and your posts have helped me mentally prepare.

  4. It's great to hear it's helping people still. I am coming up on 5 years post RPLND and cancer free. Just stick with it, I seems hard now but trust me it gets better.