Cancerversary

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"

1st Post Chemo/RPLND Full All Clear

Just a short update but wanted to let everyone know I got my first CT + Bloodwork results back since the surgery.  All tumor markers normal, and a clean CT scan. 1 down (3 more to go) to make the 1 year mark.  After that my recurrence chances are very small.

RPLND @ IU - Day 6

I wanted to let everyone out there know that my surgery went well, no complications and I am on my way to recovery now. The pain was pretty bad, and still is at this point, but it will get better as time goes on... as with most surgeries everyday is better than the one before it.  The great news is that I got my pathology results back and my remaining masses were Teratoma and Necrotic tissue.  The latter is just dead cancer cells from the chemo (3xBEP that whooped it up) and the former isn't really that bad.  Teratoma (the mature kind) is very slow growing and quite treatable in small quantities like I had <4.3cm max dimension by resection. Really it only becomes an issue when it is in very large masses or when it is in places that cause issues to other things your kidneys or arteries. If it goes unchecked for long periods of time it can also transform into some bad things but no reason to talk about that because its GONE!

Dr. Foster officially told me I am "cancer free" so 4-12-2012 is the first day I was clean of cancer since my original diagnosis back 11-21-2011.  Its been a crazy 5 months, diagnosis, I/O, port, 3 rounds of chemo, and then then RPLND to get the remaining stragglers.  But now is the beginning of the end, I can switch to surveillance and start putting this all behind me.  Its been quite the journey but, its all paying off.

Now as with most TC cases I do have a chance of recurrence, but due to the very small volume of teratoma Dr Foster removed and the wonderful response I had to my chemo he says my chances are quite low.  From my research I found the same thing, and even if I do have a recurrence with Dr. Foster/Einhorn in my side of the ring I am confident we will find and squash it quickly! All I can do now is focus on recovering from the RPLND (which is going to be an adventure in of itself) and get myself and healthy and all around "better". I will start marking off those check boxes as I get test after test of clean and clear results as we move through the coming months.

I wanted to give you guys a couple of pictures from my experience up at IU, which I would whole heartily recommend to ANYONE. Their care was fantastic and Dr. Foster is amazing. First, they had me up and walking barley 48 hours after my surgery... it was no fun but it made me feel so much better to move around. For those of you reading this blog about to go through an RPLND I will tell you that it will hurt and it will be a struggle but moving around, walking, just being as active as possible will help you more than ANY pain medication will.

That's one of my nurses Heather, who was amazing.. I actually had two Heather's one during the day and one during the night through Sat and Sunday it was funny. She was great, and those yellow socks mean I am a fall risk due to my surgery and my anesthesia type.  On that note I had the one where they give you a shot in your back into your spine I think (it was recommended by Dr. Foster) and I would tell anyone thinking of going through RPLND to get that if at all possible.  It was a huge help!

Then for those of you curious about the incision here you go, btw I am still sticking with the story that I got in a fight with samurai ninjas or something... hehehehe:

Well that's all for now, I will let you all know as I regain movement etc and if anything pops up in my recovery.  My plan right now is to stay home from work for a few weeks at least until I am able to move around easily etc.  I do hope to be able to work from home starting maybe next week but I am playing that by ear, my team is doing great and getting thing done at work so there is no huge rush and I want to focus on getting better first.  One funny thing Dr. Foster said was that if while I am recovering I want a glass of water or something "I" should be going to get it instead of having my wife do it because movement and activity are what will make me better and stronger.  I am sure my wife is gonna love quoting that back to me in the coming weeks HAHAHAHA.

RPLND @ IU - Day 0

So the day has finally came, I am here in Indianapolis @ IU and I will soon be heading over to get my RPLND with Dr. Foster.  Depending on how I feel afterwards I may not post for a few days but I will try and give people a picture of how it went each day if possible.

My guess is that after the surgery today, I will be mostly sleeping and on pain meds :-P So tomorrow is probably the earliest I will post anything.  Once I know about pathology and etc I will let everyone know.  I am of course hoping for necrotic tissue only, then maybe some teratoma, fingers crossed there is nothing else in there.  I had a my tumor markers redone last week, first time in 6 weeks and the first time post chemo.  And great news my HCG was <1 still and my AFP actually went down a bit to 5.2!  So all looks good on that front, now I just need to get this remaining "crud" out of my system so I can put all this behind me and move on.

This isn't going to be a picnic but I have had a lot of great advice from people on the forums (tc-cancer.com) and I am as prepared as I can be.  I also have one of if not the best surgeon in the world taking care of me so I am in great hands.

I will see you all on the other side, hopefully CANCER FREE!

Upcoming RPLND

Before I get into it, I wanted to respond to Jack (I tried to in the comments and it was being dumb and not letting me reply for some reason):

First "what I took" during chemo.  The only thing I took aside from what my onco prescribed was Vitamin E.  Someone on the forums recommended it, and I cleared it with my Dr.  Basically I did 800 IU a day during round 1 every day, and upped it by 400 IU each round.  Honestly I can't say for sure it did anything. However, the one day I didn't take it my fingers flared up and hurt bad so who knows.

As for follow up treatment it seems like, from the NCCN guidelines, that the first "Stage" of treatment is pretty straight forward at least in my case.  So I felt comfortable with a local onco as long as they followed NCCN and I did shoot Dr. E an email and he recommended the same.  After that though there were many branching ways I could move forward and for those decisions I really wanted to get the top people ie Indiana or Sloan involved.  Since I decided to go RPLND (Wasn't much choice per Dr. E to be honest) I wanted Dr. Foster so that's who I got luckily!

Now for all you out there wondering, YES I am getting an RPLND.  I have it scheduled for next month in Indiana with Dr. Foster.  Dr. Einhorn didn't really give me much option, with 2 nodes at ~4.5cm unchanged through all 3 rounds of chemo he said they need to come out.  The could just be scar tissue, but they could also be teratoma or worse and the RPLND is the only way to know.  While I am not looking forward to the surgery, or its recovery, or the ramifications of complications from it I do have one of if not THE top surgeon which makes me feel much better. The statistics for "curative" treatment from a 3xBEP chemo followed by an RPLND also make me very hopeful.  So fingers crossed for teratoma or necrotic tissue only (just the latter would be awesome too).

I do plan to post my experience with the RPLND and Indiana/the trip etc at some point.  If I don't' feel up to it during/after maybe after I have recovered a bit.  I am hoping for the best, but still apprehensive of the path ahead. All I can do is tackle each thing that comes before me and try and make the best of it.... and that's what I plan to do!  I will say its hard to believe that its only been less than 4 months since I found out I had cancer, so much has happen and I have gone through so many things... Hopefully this RPLND, while scary and a big thing, can be the final chapter in the story for me and I can move on.

POST-Chemo Tests

Mixed news of sorts from the PET/CT.  My tumors haven't shrunk at all, nor have they grown.  My brain/lungs/kidneys etc etc are all still clear, basically the scan looked the same as before chemo.....my markers are all in the normal range still but my two larger ones 4.2&4.3cm ones are still the same size.  Dr said they are either teratoma (Though he suspects they would ahve grown a bit over the ~3month course of chemo... ) or just scar tissue left over.  They have no way of knowing so.. urgh RPLND is my next step.

Setting up to meet with some people at MD Anderson, sent Einhorn and email, and so it all begins again.  They also said that post-RPLD if they find anything at all besides scar tissue i will probably get 1-2 rounds of VIP. Fun Fun, just when you think you are done they keep pulling you back in..

UPDATE:  So I have been talking with Dr Einhorn and Dr Foster and Indiana University.  Its one of the "center's of excellence" for Testicular Cancer treatment.  Some places I was reading even list Dr Foster as the "world leading expert in testicular cancer related surgical procedures".  I am going to try and work out with my insurance company and my work to let me take off (probably have to burn vacation days for this one since its a lengthy hospital stay in Indiana).  But, if I am going to have this surgery that scares the crap out of me, I might as well have it done by the BEST!

I will let you all know how it turns out, otherwise Dr Einhorn recommended a surgeon here at MD Anderson we could see if I couldn't make the trip up there.  There are so many things that can go wrong, and your chances of recovery and relapse are directly related to how good your surgeon is I really want to get the best I can.  Not sure how I will pay for all of it, plan travel, hotels, co-pay (or if its not covered AAAaaaah) but we are going to try!

BEP Round 3 Day 22

LAST DAY OF ROUND 3

As some of you might notice I am at Day #22 of this round, which normally ends after 21 days.  However my blood work was bad last week and as you know I had to skip a week and get a transfusion so my body could recover enough to get this final dose of Bleo.

Well some good news, my CBC numbers all came up.  My white blood cell count is in the normal range, and my red blood cell count and HGB are up nicely.  Still low but up from 6.2 to 10.2 for HGB for example.  I can tell you, its a WORLD of difference between the 6s and the 10s for hemoglobin.  Before all this chemo fun started (which seems like so long ago...) my HGB was in the 16-17 range so I am not back to that level of nice oxygen transfer but it is nice to feel somewhat normal as long as I dont' stress my body out too much.

Now for the even better news, my tumor markers from last friday came back.  My HCG was already <1 last time and it remained <1.  But more importantly (or just as importantly I guess) my AFP came down from 27 which it was at the start of this Round 3 fun, down to 7.2!!! So, finally I am in the  normal range for all my markers! This is a huge win in my book, though I know I have more of this journey left its a great milestone.

I have my CT/PET next week, and a follow up with my Oncologist.  I am hoping for <1cm and no activity, so we shall see.  My big concern now is that  from this point on it isn't a straight line in the NCCN guidelines and Indiana and Sloan don't agree 100% on the path forward so its time for decisions.  I really really don't want to do the RPLND because its a major surgery with major risks and a huge scar and possible bad side effects.  However, I don't want to make a bad decision.. go on surveillance and then 2 years from now after I have battled a horrible re-occurrence and I am facing even worse issues I regret that "If I had only done the RPLND, maybe none of this would have happened."  Its a huge decision and honestly I don't know what I am going to do, for now I am just focusing on hoping for a great CT/PET and I will deal with the decisions about moving forward in a week or two.  From what I have read they like to do the RPLND a bit after the last chemo, cause my insides are sticky jelly right now from the chemo, so it will give me some time to think at least.

I did take a last day picture but honestly, I don't feel like this is a Victory just yet. It was a bright and hopeful day with some great test results and I am going to leave it at that.  As you can tell by me posting this at after 4am in the morning I am not exactly savoring the victory :-P